Friday, 28 December 2012

Shingle hell, shingle hell, shingle hell pop!

My weakened immune system, courtesy of the antibody treatment, is what led me to today's topic: My butchering of the well-known Christmas song lyrics used as the title for this post.  That's probably about as much Christmas spirit as I'll managed to muster-up this year, which you'll probably start to appreciate once you've read a bit more about the joy that is shingles.

A few days after the fifth antibody treatment, whilst visiting some of the family, I started to find it was uncomfortable sitting down.  At first, I just assumed that spending a few hours sat on a hard chair was the cause of the problem, and that soon enough I'd feel fine again, but when it still felt uncomfy the next day I started to think that I had maybe been bitten by a mosquito or something instead, hence the recovery process would be that bit longer.  However, by the next evening, there were a few other nearby places that were also red, raised and tender, so I decided to ring the hospital about it, as it was now starting to look more like a rash.  I couldn't describe it very well over the phone, as it was hard for me to see it, so the hospital suggested going to see my G.P. the day next.  The next day I managed to get a late afternoon appointment, where the G.P. took a quick look and said that seems like early shingles to me, as there are some blisters.  My G.P. prescribed some antiviral medication, but suggested getting in touch with the hospital to check whether they advised doing anything else, given they are much better placed to understand this issue in the wider context of my other treatment etc.

Once I got home, I spoke to the hospital and they said to start taking the antiviral medication as prescribed, but to come and see them early the next morning.  I had to go early, before other patients arrived, as if it was shingles, then I would be contagious, so avoiding contact with other patients was clearly desirable, especially given such patients would likely have weakened immune systems.  The next morning, when I arrived at the hospital, one of the receptionists guided me to a consultation room that was out of the way, and I'd imagine was probably not going to be used for anything else that day.  Shortly afterwards, one of the nurses put a warning sign on the door, so that everybody knew that I might have a contagious virus - The nurse explained why the sign was being put up, as I guess some people might panic if they saw a medical professional doing this, but I didn't really think anything of it - If the nurse had been wearing a hazmat suit, it would have been a different story!

It wasn't long before another nurse came in to collect blood samples and do the weekly flushing of my Hickman line.  Shortly after that nurse left, a doctor and yet another nurse came in to see me.  They took a look at the rash and agreed with my G.P. that it seemed like shingles.  The doctor really just suggested taking a different antiviral medication, which is both stronger and required less doses per day (is more practical), and said that I'd need to wait around for the blood test results just in case anything else was required.  Once the blood test results arrived, the doctor could see that my immune system was low, which was no great surprise, so I was also prescribed some Filgrastim injections to administer over the next week (on alternate days).  Yet another nurse picked-up my prescription for me, just to avoid me having to wait at the pharmacy where I might spread the virus; It did amuse me that my prescription seemed to be handed to me at arm's length - held by just a thumb and one finger.

I'd imagine some of you are probably now thinking: So, what exactly is shingles?  Well, shingles is what someone gets when the chickenpox virus reactivates.  When someone gets chickenpox, their body builds-up an immunity to it, but never completely gets rid of the virus, i.e. it is merely kept under control by their immune system.  The virus actually lays dormant in nerve cells, until such time that it is reactivated, e.g. when the carrier has a weakened immune system.  Once someone has shingles, the affected areas of their skin are contagious to the touch, but can only give someone chickenpox, and even then only if they've never had it previously (or have a weakened immune system); i.e. it's not actually possible to give someone shingles itself.  Shingles is most common in people aged over fifty (about one in four of us get it in our lifetime), it's unusual to get it more than once, it tends to occur on the upper body, and it can take a few weeks before the rash disappears.

Note: I actually got the rash a little further south than the norm, and after nearly two weeks of sitting on it, I'll definitely be glad once it has gone.  If you're now thinking, when you said "a little further south", I thought you were meaning somewhere else for a minute; Unfortunately, I got it there too!

The use of antiviral medication can reduce the duration and severity of the symptoms, but it's really important to start taking them as soon as possible, i.e. within at most three days of the rash starting to appear, as otherwise their effectiveness is significantly reduced.  In other words, it's definitely worth going to visit your G.P. sooner rather than later, especially if the rash is on your face; The blisters can actually result in permanent blindness and/or deafness in any eyes and/or ears that are affected, respectively.  The only other medication that might prove useful is painkillers, as the blisters can really hurt; They feel like a mixture of tenderness and soreness, a burning sensation, and occasional sharp stabbing pains.

Note: I tried taking some paracetamol for the pain, but for me they were pretty much like sneezing on an inferno, so after a couple of days of taking them, I never bothered with them any more.  I did find that minimising any contact with the blisters (even just the slightest of touches from clothing) helped; Also, in contrast to my recent run-in with an infection resulting in several days of diarrhea, I actually found that I was most comfortable when sat on the toilet, as the seat was cool, which seemed to ease the soreness and burning sensation, and I could sit down without putting any pressure on the blisters.

Shingles itself looks quite similar to chickenpox in that it presents as a red (usually itchy) rash, which ultimately results in blisters that eventually dry-out/scab-over; However, unlike chickenpox, shingles rarely appears in more than one dermatome (area of skin supplied by an individual nerve), as the virus normally works its way (from the spine) along a single nerve until it eventually forms blisters on the associated area of the skin - That's also why it normally only appears on one side (left or right) of the body, and the blisters are quite concentrated, i.e. form in clusters.  The blisters can leave scars once healed, and can also be extremely painful.  The pain can last for weeks, months and even years after the rash itself has gone, and can also prove to be particularly tricky to treat.  In fact, even before the rash appears, the area can be tingly, itchy or even painful, as the virus works its way down the nerve.

Note: For about a week, each day I have taken a picture of the rash at the top of my right leg, as the hospital told me to let them know if it didn't seem to be getting any better (or was spreading), because it might be necessary for me to have additional treatment; However, due to the location and the sheer number of blisters, it was kind of hard to tell just by looking and remembering, hence that's where the digital camera (in my phone) came in handy.  If you are lucky/unlucky (delete as appropriate), I might even upload them in a later blog post, so that you can appreciate the true horror just that little bit more!

Monday, 24 December 2012

Wrapping up the antibody treatment!

A week ago on Wednesday, I had my fifth dose of the antibody treatment (Brentuximab Vedotin) and, much like with the previous doses, it went fine.  In the consultation beforehand, I did discuss with the doctor whether this might prove to be my last dose, as depending on the timing of the Allogeneic Stem Cell Transplant, which is still to be confirmed, I might not need another dose.  However, for the time being, a sixth dose has been schedule for the 7th of January, just in case.

The sixth dose of the antibody treatment might only be a half-dose, if I do actually need it; After discussing the peripheral sensory neuropathy (mostly numb, tingly and tender finger tips) side effect that the antibody treatment is giving me, the doctor suggested a half-dose might prove useful in a couple of respects: to minimise the potential of permanent nerve damage in my finger tips, and to enable a second half-dose later on, should the Allogeneic Stem Cell Transplant be delayed for any reason.

Note: The initial approval that I received for the antibody treatment was only for six full doses, hence any further doses would require additional approval, as funding would need to be allocated.  Given that the antibody treatment is working well enough for me to proceed with the Allogeneic Stem Cell Transplant, it is highly unlikely that approval for further doses would be declined, but due to the antibody treatment only being available in batches of at least three full doses there would be significant cost (not to mention grief with paperwork etc) savings in avoiding going slightly beyond six full doses.

As you may remember from my recent posts, the antibody treatment had been delayed slightly with the most recent two doses, as my immune system hadn't been recovering quickly enough; The pre-treatment blood tests would highlight the issue, thereby causing the doctors to prescribe a few days of Filgrastim injections to speed-up the recovery process, thus pushing back the treatment date.  Going forward, the plan is to assume that I won't recover quickly enough, so the Filgrastim injections will be prescribed in advance; Hopefully, that will avoid delaying any future treatments.

Friday, 21 December 2012

Where and when will the Allogeneic Stem Cell Transplant take place?

As planned, a week ago on Tuesday, I went along to a hospital in Sheffield to discuss the possibility of having the Allogeneic Stem Cell Transplant there, instead of in a hospital in Leeds; I'd already visited the hospital in Leeds a couple of times to discuss having the treatment there, but the hope was that the hospital in Sheffield would be able to fit me in earlier, i.e. in January, rather than in February.

The doctors that are looking after my case are keen for me to get started as soon as possible with the Allogeneic Stem Cell Transplant, as that will minimise the amount of the antibody treatment (Brentuximab Vedotin) that I'll need to have to keep the Hodgkin's Lymphoma under control, thereby reducing the probability of any long-term side effects, whilst also decreasing the possibility of the disease starting to become resistant to the antibody treatment.  As you might imagine, I'm keen to get on with it too, as the sooner it starts, the sooner it is over and done with!

It has actually been quite enlightening visiting the different hospitals recently, as it's interesting to see how they vary from one another.  In terms of the buildings that I've visited, the Leeds hospital is quite similar to my local hospital, which isn't too surprising as both were opened within the last five years, hence they both have a modern look and feel to them.  However, the Sheffield hospital has been around for a few decades, and consequently has the maze of narrow corridors that are cluttered with chairs, so unfortunately feels much less inviting.

Whilst the Sheffield hospital does feel much less inviting, purely because of its appearance, the staff there were really nice and very attentive; They seemed especially conscious about you sitting in the waiting areas, as on a couple of occasions they apologised for the delay, even though I didn't think I'd been waiting very long - If I'm honest, I was expecting to wait much longer.  In contrast, I did think that the Leeds hospital seemed a bit more clinical than the others; No doubt that was in part because I don't know anyone there (and vice versa), but things like the nurses shouting-out your position in the queue, rather than your name, when calling you in to collect blood samples, didn't really help to make the place feel friendly - Instead it seemed unnecessarily impersonal.  The 'take a ticket and get in line' approach did have its advantages though, as whilst sitting in the waiting room you could easily tell where you were in the queue; That's something that my local hospital's approach is definitely lacking, as they just call you in by name.  A combination of the two approaches would clearly be an easy improvement for both hospitals, so hopefully they'll learn from each other in the near future.

Putting the differences between the hospitals themselves aside, the Sheffield hospital didn't really have that much to tell me about the Allogeneic Stem Cell Transplant, as the Leeds hospital had covered that with my prior two visits there, but they did quickly go over a number of things again, just to ensure that I knew what to expect - They have also repeated a number of the blood tests, e.g. to check that the stem cell donor is a suitable match for myself, because having the treatment there makes me their responsibility, and consequently they want to double-check certain things, just to make sure there hasn't been any confusion or misinterpretation when transferring medical records between hospitals.  That's all fine by me; These things need to be right!

In terms of the Allogeneic Stem Cell Transplant, it turns out that the Sheffield hospital do some things slightly differently to the Leeds hospital, as the treatment that they give prior to administering the donor's stem cells, i.e. the conditioning regimen, tends not to involve total body irradiation (radiotherapy to the full body) and makes use of different chemotherapy and antibody treatments.  The conditioning regimen used by the Sheffield hospital is known as FMC; It contains two chemotherapy drugs, namely Fludarabine and Melphalan, and an antibody treatment, namely Alemtuzumab (marketed as Campath).  I've had Melphalan previously, as it was part of the conditioning regimen used when I had an Autologous Stem Cell Transplant, but the other two drugs are new to me; I get the impression that Melphalan is the worst in terms of unpleasant side effects though, and I know what that's like, so hopefully the other two won't really bother me very much.

Part of the reason why I think Fludarabine tends to be tolerated quite well is that for the first five days of the conditioning regimen, i.e. whilst Fludarabine is being administered, the Sheffield hospital will let you stay at home if you live nearby, or they'll provide a nearby flat if you live further away.  Personally, I'd probably prefer to stay in the hospital ward though, as logistically speaking it will be easier for me that way; I could stay in the flat, but someone would need to stay with me, which would be a bit of a hassle, so probably not really worth it for a few days.  Also, being in the hospital ward, when I'm hopefully feeling fine, will give me the opportunity to learn the ropes and meet some of the staff; That might make the weeks that follow a bit easier, i.e. when I'm likely not feeling so great.

The estimate is that the treatment will take about four weeks in total, at which point I'll be able to go home, but I'll need to return to the hospital regularly (once or twice a week) for several months afterwards, so that they can monitor me for any complications and adjust my medications accordingly - I may also be readmitted at any time should, for example, I pick-up some kind of infection.  It also sounds like it will be a while before I start to feel fine again, so all in all it won't be much fun.

When it comes to the timing of the treatment, the Sheffield hospital are currently estimating the 20th of January, which is about a month earlier than the Leeds hospital, as they were estimating the 22nd of February.  The Sheffield hospital did say that they might be able to bring it forward a week, but I would have to wait and see what happens; My local hospital gave me the impression that it is more likely for things to be delayed than brought forward, but that an appointment in January might prove to be more reliable, as the holiday period could mean that the hospital has more of a clean sheet than usual.  Either way, I'm currently waiting to hear when exactly I can have the treatment in Sheffield, as well as when I next need to see them, as they'd also like to see me about two weeks prior to it.

As I mentioned previously, before I go for the treatment I need to have another heart scan, just to make sure it still looks fine.  I now also need to have a dental check-up; The Sheffield hospital requested the dental check-up just in case it identifies any work that might need doing in the near future.  I assume it is best to do any dental work now, because even minor issues might prove quite problematic after having the treatment, as my immune system will be suppressed/low for quite some time; In other words, treating any such issues now will avoid having to do so when I'm at much higher risk of picking-up some kind of infection.  The dental check-up is currently arranged for the 3rd of January, but I'm yet to hear about the heart scan.  The dental check-up could have been done yesterday, but unfortunately another viral infection ruled that one out; That's a story for another post!

Friday, 7 December 2012

Change is the only constant

Rewinding back to a week ago, I went into hospital to find out the results of my latest PET scan, and, after waiting for an hour or so, the doctor called me in for the consultation.  The doctor started by suggesting that we had a look at the latest PET scan, but, after fiddling with the computer for thirty seconds (at the most) whilst mentioning that the computer has been a bit unreliable recently, the doctor decided to abandon that idea, and just summarise it for me instead.  Whilst I was listening, I couldn't help but smile at the thought that as I'm waiting to find out the results about whether the antibody treatment is working or not, and consequently whether I'm still on-track for a potential cure or we're about to discuss how much longer I have left to live, we're essentially sat trying to load-up what to me isn't much more than a pretty picture, courtesy of a mobile PET scanner!  This really just helped to reinforce a comment that I often make to colleagues etc about designing anything: We're all superficial really - Whether it's great or dire, people will like it a lot more if it's pretty!

So, what were the results, I hear you say?  Well, putting aside the lack of pretty pictures, they were good.  The antibody treatment is working well enough for me to proceed with the Allogeneic (from a donor) Stem Cell Transplant, as the mass has shrunk a little further, but more importantly is much less active.  There are still some areas on the PET scan where the activity is above what would be considered normal, hence I've not had a complete response to the antibody treatment, but the partial response has been good enough; As you may remember, I had previously been told that they were looking for the PET scan to be negative (look normal), but it seems slightly positive is fine too, as it doesn't seem to affect the outcome, and further doses of the antibody treatment, whilst I wait for an available slot for the Allogeneic Stem Cell Transplant, may improve my response.  So, your (but evidently not Starbucks') taxes were put to some use after all.  I did talk to the doctor for a bit afterwards, just to clarify a few things that I was curious about, and to joke that it was especially important to be nice to me/helpful this week, as all of the doctors' consultations were being reviewed by their patients, but ultimately proceeding with the next stage of treatment was the important point, which meant going back to Leeds, after the weekend, to discuss the plans in more detail.

After the weekend passed, and a failed attempt to find a Burger King on the way to the hospital in Leeds, all that was left was getting bled, weighed, measured and swabbed (again!), before talking to the doctor about the Allogeneic Stem Cell Transplant.  The consultation didn't really go as I expected though, as, after I asked a few follow-up questions based on the previous consultation and provided some further medical history, I was informed that Leeds didn't have an available slot until the end of February, and that would have really meant putting my treatment back further than the doctors felt comfortable with, so I was asked whether I'd consider going somewhere else instead, e.g. Sheffield or Nottingham.  For me, it didn't really matter all that much, as whether it was Leeds, Sheffield, Nottingham or somewhere else, I'd only do the journey there and back once; On the other hand, for visitors, Sheffield was the preferred option, as it was closer, but Nottingham was fine too, if that proved necessary.  The doctor said the location of the after-care could be decided later on, be that at Leeds, Sheffield, or shared between Sheffield and my local hospital.  So, I left the hospital in Leeds with the plan of having the treatment in Sheffield, if they can fit me in, or Nottingham, if not.

Note: One of my follow-up questions did highlight that whilst the Allogeneic Stem Cell Transplant does fail under the pressure or result in rejection in about one in ten cases, my assumption that it was then essentially game over at that point was incorrect, as it seems top-ups of the donor's immune system (Donor Lymphocyte Infusions or DLIs) or increasing the drugs that prevent rejection (immunosuppressants), respectively, is the next step.  Another follow-up question, about whether my predicted two-year survival rate of the treatment was any different now, highlighted that for some reason the results of my latest heart scan and lung function test hadn't made it to the doctor in Leeds, hence there wasn't much that could be said.  It is bizarre that with all of the technology available these days that hospitals don't have better systems in place, e.g. ones that enable the sharing of patient data irrespective of the medical professionals' location, but working in the software development industry myself I'm no longer surprised by the out-of-date processes that organisations have in place.

Whilst waiting to find out where I would be having the treatment, I was unfortunate enough to pick-up some kind of bug, which meant spending way too much time on the toilet for a couple of days, as I literally flushed away a few kilograms; Diarrhea is definitely not fun.  For the first day or so, I was also pretty drained of energy, had stomach ache, and had a headache, but after that it was really just gradually decreasing visits to the toilet.  It was a pain in the ass, if you'll forgive the pun, but not that bad really.  I did check with the hospital what they wanted me to do, but they just said don't eat, drink plenty, and avoid taking imodium, as if it's some kind of bug rather than a side effect of the antibody treatment, which seemed likely given it was quickly getting better, then it's best to just let your body get it out of your system.  The hospital did also say that it would be best to delay my next antibody treatment if I was still symptomatic when the treatment day came around, as it wouldn't be a good idea for me to go to the hospital, because I'd just help to spread the bug.

As it turned-out, I'd been fine for about half a day when, today, it was time to go for my next antibody treatment, so I went, but it proved to be a wasted journey in the end, as my neutrophils were once again too low, which meant I was prescribed some injections for boosting my immune system, with the plan to try again straight after the weekend.  However, that wasn't going to work, as the hospital were already too busy then, so it was pushed back a couple more days.  I did find out that having the Allogeneic Stem Cell Transplant in Sheffield was looking likely though, as the hospital there had requested my medical history etc, so I would likely hear from them shortly.  It wasn't long after I got home that I received a call from the hospital in Sheffield asking me to attend an appointment on Tuesday, where we would discuss the plans in more detail, and although they didn't seem to want to say they were committed to me having my treatment there in January I can't really see why else they would ask me to come along, unless they thought I enjoy trips to hospitals around the country.

I guess that brings us to the title of this post, as one thing that is certainly clear from the treatment of my Hodgkin's Lymphoma is that, just as in other aspects of life, plans change; Those changes can range from just minor diversions to complete changes of direction, but the destination is still the same: the best outcome, as perceived at the time, which for my run-ins with Hodgkin's Lymphoma is still a cure.  This last week or so has by no means been an exception to that rule, as some of the pieces of the puzzle have certainly moved around a bit, but the plan is largely the same.  Change is a funny thing really, as it's often resisted (and even feared), but it's the one constant you can rely upon, and, whether you like it or not, your options really boil down to embracing it or being left behind.

Thursday, 29 November 2012

Can you work whilst being treated for cancer?

Over the last few years, I've had a number of different treatments that aimed to cure me of Hodgkin's Lymphoma, and the severity of the side effects from those treatments has varied from one extreme to the other really, so whilst at times I could have easily worked, there were also periods where it simply wasn't even a remote possibility.

For the duration of my first line of treatment, i.e. six months of ABVD chemotherapy as an out-patient, I actually worked from home, and despite going into hospital for various appointments, tests, scans, procedures and treatments, I'd imagine that I still did more than my contractual hours/obligations. The occupational health department at the company where I worked at that time did suggest reducing my hours, and my colleagues had no real expectations in terms of how much work I would get done, but, even though the side effects of the treatment weren't nice, I didn't really feel that unwell that I couldn't work, and if nothing else work provided a distraction from it all, so I really just carried on (and got paid) as normal. In essence, all that the treatment really meant for the company was that my colleagues were unable to contact me occasionally, and, even then, in the vast majority of cases it was only for a few hours or so. The company seemed to have no problem with my absences etc, as all that I was asked to do was to keep HR and my colleagues informed of when I would be unavailable; Now that I think about it, I probably had less time off work being treated for cancer than some of my colleagues did to recover from colds!

For the duration of my second line of treatment, i.e. DHAP chemotherapy, BEAM chemotherapy, Autologous Stem Cell Transplant and radiotherapy, I didn't work at all. The reason being that the very day that I found out my Hodgkin's Lymphoma had relapsed also happened to be my last day at work, as I'd just been made redundant. Whether my medical history influenced that decision I'll never really know for sure, but, at the time that the decision was made, my employer didn't know about the disease relapsing, i.e. all that was known was that I'd had the disease previously, and that it could potentially come back one day. At that time, I was also living with a relative, as I was waiting for my new house to be built, hence whilst there is never a good time for cancer to relapse, there are no doubt better ones than I found myself in. All of that aside though, there were some periods during this treatment when I was well enough to work, but it would have been the odd week or so here and there, so in reality it may have proven impractical to do so, even if I did have a job, and I probably wouldn't have wanted to spend that time working anyway, as otherwise I'd have only ever been unwell or at work. There were two main reasons why the second line of treatment was a different experience: it was much more aggressive, and consequently the side effects were much worse at times; and it involved spending a fair bit of time as an in-patient.

Note: On one occasion, whilst the doctor was prescribing the ABVD chemotherapy, I was explaining how the future of the company where I was working looked quite uncertain, and that my parents were planning on selling their house, which was where I was living at that time, to move to Tenerife, hence it would be quite funny if, all in one year, I ended-up being homeless, made redundant and diagnosed with cancer! For the rest of that consultation, the doctor occasionally/spontaneously started laughing, as despite the doctor's best efforts to put that thought aside, it kept finding its way back again. Of course, unbeknown to me at the time, about a year later, I would actually find myself homeless, made redundant and rediagnosed with cancer on the same day!

In the end, I was out of work for thirteen months, the majority of which was spent having or recovering from the treatment, before I started a new job. During that time, I received the Employment & Support Allowance (ESA) and Disability Living Allowance (DLA) benefits from the Department of Work & Pensions (DWP), which given my circumstances provided enough of an income for me to manage, which is fortunate really as the last thing that I needed to be worrying about was paying bills; I could easily see how some people, in different circumstances, would find it financially stretching though. Once I actually started applying for jobs, I did quickly notice that explaining that the recent gap in my employment history was due to medical treatment didn't work out very well for me: I was never offered an interview when I mentioned it when applying; I was offered an interview, but never got the job, when I mentioned it at the interview; and I was offered the job when I never mentioned it at all. It could have been a coincidence, but the pattern certainly did seem to be telling, and to be fair I can understand why it would make potential employers think twice, especially when buried in applicants. One thing that did amuse me though, after three months of being back at work, when the DWP finally cancelled my benefits, after I got in touch with them to remind/chase them about doing so, was that I then received one final payment to help me get back to work!

To date, for my third line of treatment, i.e. IVE chemotherapy and Brentuximab Vedotin (an antibody treatment), I have been on sick leave through-out. It has actually been nearly six months now, and my current employer have been much better than I expected about it, as they have generously continued to pay my full salary each month, even though I had only been there a year when going on sick leave, and they had no contractual obligation to do so. During that time, I have also been receiving the DLA benefit, hence coping financially hasn't been an issue. Looking back on the recent treatments: I couldn't have worked for the first couple of months or so, whilst having the IVE chemotherapy, as I spent most of that time in hospital, so there were only a few days when I was at home and mostly felt okay; and I could have worked some times since then, but the uncertainty around what treatment I would be having, how I would respond to it, and whether it made sense to spend that time working, meant that even with the wisdom of hindsight I'm still unsure what's best.

One final point of amusement, and what actually prompted me to write this post, was that today a letter arrived from the DWP informing me that I would soon receive my Christmas Bonus! It's best not to get too carried away with it though, otherwise I might spent all £10 of it at once! Working in I.T., my instinct was to google it, and it turns out that back in 1972 when the Christmas Bonus was introduced, it was £10 then too! Don't get me wrong, I do appreciate the gesture, but I can't help but think that the government could find a better use for this money, as, when combined with the administration costs of providing the Christmas Bonus, I'd imagine it amounts to a sizable sum; one that could potentially make a real difference elsewhere!

Monday, 26 November 2012

Another day, another scan!

Four days ago, when I woke-up at around 9:30am, the first thought that crossed my mind was: I'm thirsty! So, I looked-over at the bedside table, saw a half-full (I'm an optimist) glass of Pepsi and was just about to drink it when I remembered that I had to set-off for a PET scan in an hour or so. As you may remember from an earlier post, you are not allowed to eat or drink anything except water within six hours of a PET scan, so my thirst was going to have to wait until I went downstairs.

As it happens, I live in a three storey townhouse, where my bedroom is on the top floor and the kitchen is on the bottom floor, so being thirsty was never going to beat the desire to avoid going up and down two lots of stairs. With that in mind, I went about the first part of my usual morning routine, whilst constantly reminding myself not to drink the Pepsi, as I could just imagine drinking it without thinking, e.g. to help swallow the daily co-trimoxazole tablet; I was still allowed to take that tablet, as it wasn't sugar-coated so wouldn't affect the PET scan.

After a few minutes, once I was finished on the top floor for the time being, I headed down to the kitchen with the half-full (I'm still an optimist) glass of Pepsi in-hand, and that's when I noticed a water-mark on the hallway ceiling! I'd seen such a water-mark previously, in the very same spot, after some particularly windy and rainy weather, but the roof had in theory been fixed since then - That seemed unlikely now though!

Despite the leaky roof, I carried-on down to the kitchen, put the Pepsi in the fridge for later, got a pint of water, and headed back up the stairs to continue getting ready. However, just as I was getting to the top of the stairs, I had a quick sip of the water only to find it was warm, so off I went back downstairs, got some fresh water, which was actually cold this time, and then carried on getting ready.

The day just wasn't off to a good start really: I'd woken-up thirsty, but wasn't allowed to drink the Pepsi I had to hand; I'd taken the daily co-trimoxazole tablet without any fluids, which tasted horrible and got stuck to my throat; I'd just found out that my roof was still leaking; and the first pint of water that I got to quench my first was warm! Considering I'd only been awake five minutes, it wasn't going well!

I did manage to get ready without any further incidents, but still ended-up arriving at the hospital a few minutes late, due to getting stuck in some unexpected traffic. I didn't think it would really matter though, as when I was given my appointment I was asked to get there thirty minutes early, so (still being an optimist) I just thought that I'm not quite as early as I should have been. However, as it turned-out, the appointment before mine had been cancelled earlier that morning, so rather than sitting in the waiting room for half an hour, I went straight through to getting ready for the PET scan, as they were waiting for me.

When walking by the entrance to the waiting room, I realised that I'd not quite drank as much water as is recommended, as I only had about two-thirds of a pint at home, and I wouldn't get the opportunity to drink any more now, as the water-cooler is in the waiting room. I normally drink very little fluids, but you're supposed to drink a pint or two of water within a couple of hours of the PET scan, so I had planned to drink a pint of water at home, followed by some more at the hospital; However, that plan went about as well as the rest of the morning had gone so far.

After going through my recent medical history with one of the team members operating the PET scanner, which I believe is only necessary as it is run by a third-party that doesn't have full access to my medical records, I had the radioactive tracer injected into my blood stream, before finally waiting about an hour to start the PET scan itself. As I mentioned in a previous post, you have to wait in a quiet room by yourself, as you need to do as little as possible; That allows the radioactive tracer to be absorbed by any cancerous cells, rather than the muscles in your arms and legs, for example, thereby lighting-up any remaining cancer to the PET scanner; Having said that, after about half an hour, I was asked to move into the room with the actual PET scanner in it, where I waited for the rest of the hour - I assume that was so they could begin preparing the next patient. Once the hour was up, I was guided to the toilet, as you're supposed to have an empty bladder when you have the PET scan itself, but given I'd not drank very much it proved to be a wasted journey.

Upon returning to the PET scanner room, the first thing that I noticed was that the bed that slides back and forth through the PET scanner had some kind of head constraint on it. Also, after the usual laying down on the bed, lowering my trousers so that the metal in the belt etc wouldn't get in the way of the PET scan, and having a cushion/rest placed under my legs, what seemed like a wide velcro constraint was fastened around my abdomen. Both of these constraints were new to me, but I assume they are just intended to reduce the potential for movement during the PET scan, as to get clear images it's important to stay still. I'm not sure how well the constraints work in reality though, as I felt more of a need to move than I normally do, just because it wasn't quite as comfortable when fastened in.

Shortly after the PET scan started, I heard one of the team members operating the PET scanner enter the room and start talking to me. I couldn't make out what was being said at first, but eventually I realised that I was being taken out of the PET scanner, as I needed to remove my t-shirt! It turned-out that there were a couple of small decorative metal buttons on the neckline; I'd never given this t-shirt any thought as I'd previously always kept other t-shirts on when having PET (and CT) scans, and unfortunately no-one else had noticed the metal buttons before I got into the PET scanner, but they were getting in the way, so the t-shirt had to come off. The tricky part was that, as I mentioned above, you're not supposed to move once the PET scan is started, hence all of the constraints, so I had to try to sit-up, remove my t-shirt, and lay back down in exactly the same position! I'm not quite sure how successful I was, but the rest of the PET scan seemed to go fairly quickly after that.

To say this PET scan didn't go quite as smoothly as the previous ones is perhaps a bit of an understatement, and after all of the fun and games that morning the optimist in me was starting to see the advantages of pessimism, but all of that aside hopefully the results themselves will be good! The third-party that performed the PET scan said that the results should be available within three to five days, but that in reality within two days is the norm, so as planned they should be discussed tomorrow by the medical team looking after my case, and then explained to me a few days later. I'll then finally know whether all of the money spent on the antibody treatment (Brentuximab Vedotin) was worth it, and what's next for me in my on-going battle with Hodgkin's Lymphoma!

Speaking of the antibody treatment, I don't seem to have been feeling as tired recently, so perhaps it was never actually to blame for that particular side effect, i.e. maybe it was the steroids that were resulting in me feeling tired, hence that side effect gradually faded away after I stopped taking them about three weeks ago. Having said that, I am definitely getting some peripheral sensory neuropathy now, which is a common side effect of the antibody treatment, as the ends of some of my fingers and toes do feel an odd combination of tingly, numb and tender at times. It's a good job that I'm not working, where I would be typing most of the day, as that would no doubt prove quite uncomfortable - for my fingers, not my toes!

In terms of what's next, I just need to wait for the PET scan results now, as a few hours after my previous post, i.e. where I mentioned all of the tests that needed to be performed in order to return to the hospital at Leeds to further discuss the possibility of an Allogeneic Stem Cell Transplant, I was informed that there was no need to perform the heart scan yet after all, as the doctor at the hospital in Leeds had previously only been provided with the results of the heart scan I had immediately prior to starting the treatment for the most recent relapse of the disease, which is not actually the latest heart scan that I've had - If I do proceed with having the Allogeneic Stem Cell Transplant, I will need to have another heart scan before doing so, but until that time the results from the latest one will do just fine.

Wednesday, 21 November 2012

Tests, tests and more tests!

In order to have an Allogeneic Stem Cell Transplant, I need to have quite a few different tests. I have already had some of the tests, as a day after my previous post I had a lung function test, and on a few occasions I've had several blood samples taken; However, I still need to have a heart scan, for which I'm currently awaiting an appointment, and a PET scan, which is currently scheduled to take place tomorrow.

There hasn't really been any discussion about the various blood samples taken, as I believe they were mostly used in the identifying of suitable stem cell donors; i.e. there was no need to go over them unless there was a problem. However, a doctor has looked at the results of my lung function test and commented that they look noticeably better than those from about four months ago, which is good news given how much they affect the predicted two year survival rate of the Allogeneic Stem Cell Transplant.

Assuming that I do have the PET scan tomorrow, the expectation is that the results for it will be available for discussion at the multidisciplinary team (MDT) meeting a few days later; The MDT meetings provide an opportunity for various doctors and nurses to discuss patients' cases, and decide the plans for their treatments going forward. On the Friday following the MDT meeting I should find out what was decided for my case.

Note: At one point, I did think that my PET scan was going to be delayed slightly, as when I first went for my fourth dose of the antibody treatment (Brentuximab Vedotin), i.e. about a week and a half ago, the blood tests performed prior to administering it showed that my neutrophils count was about half of that required to proceed, hence my treatment had to be delayed whilst it recovered, and that likely meant delaying the PET scan too. To speed-up the recovery, I was prescribed daily Filgrastim injections, and after a couple of days I could tell that they were working, as I had the commonly associated aches and pains. When I returned to the hospital (after four days), my neutrophils count was then roughly double the maximum of the normal range, which is getting close to ten times the minimum required to proceed, hence my immune system had easily recovered enough now, so the doctor prescribed the antibody treatment, which went ahead without any further complications, and to my (and it seemed the nurse's) surprise decided that the PET scan didn't need to be delayed. Even more surprisingly though, I was out of the hospital in about two hours less than my previous record!

Should the results of the PET scan look promising, then on the 3rd of December I will in all likelihood be returning to the hospital in Leeds for another appointment. The purpose of that appointment will be to discuss the results of the above tests in terms of what they mean to me for the Allogeneic Stem Cell Transplant, and discuss yet more details about what exactly the treatment involves both in the short and longer term. However, given that I've yet to receive an appointment for the heart scan, and that they are currently taking a while to come through, then it is possible that the trip to Leeds will be delayed slightly, as when I previously went there the doctor did say that all of the results would need to be available before I returned.

Wednesday, 7 November 2012

Will the Allogeneic Stem Cell Transplant cure me?

Those of you that read my previous post will know that I recently went for my initial visit to the hospital in Leeds, i.e. the hospital where I will potentially have an Allogeneic (from a donor) Stem Cell Transplant in the near future.  The purpose of the initial visit is really just an information gathering exercise for both parties, as it pretty much just involves a discussion between the doctor and yourself about a few things relevant to the treatment (there was yet more blood tests too):

  1. The first topic was that of my medical history, which was mostly about anything other than cancer, as details about my Hodgkin's Lymphoma treatment had already been provided by the hospital where that took place; However, any potentially relevant health issues within my family was also discussed, and it was there that any history of cancer was of more interest.

    Note: Hodgkin's Lymphoma is not hereditary, so I assume the interest in the history of cancer within the family is more about what types of cancer I may have a higher risk of developing in the future; Ironically, one of the potential side effects of cancer treatment is cancer.

  2. The second topic involved the doctor clarifying/explaining how an Allogeneic (from a donor) Stem Cell Transplant works, and how that differs from the Autologous (from yourself) Stem Cell Transplant that I had undergone previously.  In a nutshell, they work as follows:

    • Autologous Stem Cell Transplant

      It is essentially a three step process: the first involves harvesting some of the stem cells from the patient, the second involves giving the patient a high dose of chemotherapy, and the third involves returning the previously harvested stem cells back to the patient.

      The treatment in this type of stem cell transplant is actually just the high dose of chemotherapy, i.e. the stem cells are only harvested and later returned because the high dose of chemotherapy pretty much wipes-out the patient's stem cells, and without them their body is unable to replenish the components that make-up their blood.  In other words, it is the harvesting and returning of the stem cells that enables such a high dose of chemotherapy to be given, in the hope that it alone will wipe-out any traces of the cancer.

    • Allogeneic Stem Cell Transplant

      It is similar to the Autologous Stem Cell Transplant, in terms of being a three step process, but: the stem cells are harvested from a donor that is suitably matched to the patient, i.e. not from the patient themself; the dose of chemotherapy may be of a reduced intensity; radiotherapy to the full body, which is often referred to as total body irradiation, may also be used (in varying doses); and finally immunosuppressive therapy is used (also in varying doses) to prevent both the patient's and donor's immune systems from launching undesirable attacks at different stages of the stem cell transplant.

      Note: Reduced intensity chemotherapy and a single session of total body irradiation is on the cards for myself, as just like with the vast majority (if not all) Hodgkin's Lymphoma patients undergoing this type of stem cell transplant I have been heavily pre-treated, and consequently a less aggressive approach is favoured as it avoids giving my body yet another severe beating - one from which it is potentially no longer able to recover, as the various treatments to date, despite being unsuccessful, still tend to take their toll.

      The treatment in this type of stem cell transplant actually comes from the stem cells of the donor, as it is those stem cells that result in the patient inheriting a new immune system, i.e. one that can hopefully wipe-out any traces of the cancer.  In other words, the chemotherapy, potentially radiotherapy, and immunosuppressive therapy may in part result in the wiping-out of some of the cancer, as a kind of side effect (and in doing so help with controlling the disease), but their main purpose is to allow the donor's stem cells to eventually replace those of the patient, and consequently for the patient to inherit a new immune system, which in turn can set about wiping-out any traces of the cancer.

    A key difference between the two types of stem cell transplants is that with the autologous variety the only concern post-transplant is whether the disease will relapse, but with the allogeneic variety, in addition to the potential for relapsing, there is also the possibility of developing a condition that is known as Graft Versus Host Disease (GVHD).

    GVHD is when the donor's immune system (the 'graft') attacks the patient (the 'host'), hence instead of it just wiping-out any traces of the cancer it is also targeting healthy cells too.  This is because immune systems have an innate ability to recognise cells that shouldn't be there, e.g. cancerous cells, so that they can wipe them out, and that inherently means they also recognise what should be there, so that they can leave them alone; However, that innate ability is for the person born with that immune system, so by indirectly transplanting that immune system into someone else that innate ability can get it wrong (to varying degrees).  The reason this happens is that the donor's immune system is only ever a close match to that of the patient, i.e. it is not a perfect match as everyone (identical twins aside) is at least slightly different - Clearly, some difference is essential too, as the donor's immune system needs to be capable of curing the disease, i.e. wiping-out what the patient's immune system was unable to do itself.

    There are two types of GVHD: acute and chronic.  Typically, acute is observed within one hundred days of the transplant, and chronic at any time after that.  GVHD also varies in severity, and that severity can be either: mild, moderate or severe/life-threatening.  The skin seems to be the most susceptible to GVHD, as those that get either type of GVHD tend to encounter problems in that area (e.g. rashes, itching, dryness, tightness, and/or redness like severe sunburn with peeling or blistering), and whilst it tends to be localised to the hands and feet initially it can become widespread.  The other main areas that are susceptible are: the liver, resulting in the yellowing of the skin and eyes; and the gastrointestinal tract, e.g. stomach and intestines, resulting in cramps, nausea, and/or watery or bloody diarrhea.  Chronic GVHD can also result in eye, lung, and/or tendon problems too.  In short, it can be pretty unpleasant.

    Some GVHD can actually be beneficial though, as after an Allogeneic Stem Cell Transplant immunosuppressive therapy must be used to keep the donor's immune system from getting carried away, i.e. targeting healthy cells due to its innate ability to recognise such cells being a little off, but how much exactly is required involves a balancing act, as suppressing the immune system not surprisingly results in an increased risk of infection, hence GVHD can provide a useful indicator for determining how much is needed to achieve that balance.  In other words, by giving just enough immunosuppressive therapy to keep the GVHD under control the donor's immune system remains active enough to hopefully wipe-out any traces of the cancer, which is known as the Graft Versus Tumor (GVT) effect, whilst at the same time minimising the increased risk of infection.  Retrospective analysis of patients that undergo this treatment also shows that the probability of the cancer relapsing is decreased in patients that get GVHD.

  3. The third topic involved the doctor stating the probabilities of: the Allogeneic Stem Cell Transplant failing/succeeding, and developing the different types and severities of GVHD.

    The Allogeneic Stem Cell Transplant tends to: be successful, i.e. provide a new immune system and cure the disease, in about fifty to sixty percent of cases; be rejected or buckle under the pressure, i.e. fail to even provide a new immune system, in about ten percent of cases; and either fail to cure the disease or further down the line result in the disease relapsing, i.e. provide a new immune system but one that ultimately doesn't cure the disease, in the remaining cases.

    Note: For the patients where the disease is not cured or later relapses, they are then treated with: the antibody treatment that I'm currently on, i.e. Brentuximab Vedotin; and/or donor lymphocyte infusions (DLIs), which can be thought of as top-ups of the donor's immune system.  As it happens, should I have the Allogeneic Stem Cell Transplant, I will be the first patient that they have had that has been given Brentuximab Vedotin prior to the transplant.

    In terms of GVHD, approximately one-in-four develop the acute type of the disease, of which about ninety percent of those encounter symptoms that are at most either mild or moderate in severity, and between thirty and forty percent develop the chronic type of the disease.  Each patient may develop both types of GVHD, a single type of GVHD, or neither type of GVHD.

    To illustrate how performing the reduced intensity transplant that is on the cards for myself compares with that of a full intensity transplant, in terms of the probability of a patient like myself (albeit based on some predicting of future test results) still being alive in two years, the doctor entered the appropriate information into his computer, and it stated the reduced intensity transplant would result in just under a seventy percent survival rate, whereas the full intensity transplant would result in a significantly lower survival rate of only forty percent.

    Note: It is only in the more recent years, when the path of reduced intensity transplants for patients such as myself was found to be favourable, that the true curing potential of Allogeneric Stem Cell Transplants could start to be seen, as previously the full intensity transplants were proving too much for many patient's bodies to cope with, and consequently it was the treatment itself that was reducing the survival rates, rather than the disease not actually being curable.

    Finally, it was mentioned that in approximately one-in-five cases, the patient does not survive the Allogeneic Stem Cell Transplant, due to some kind of complication; Therefore, when compared to an Autologous Stem Cell Transplant, where about about one-in-twenty do not survive, it does still have a significantly higher rate of treatment related mortality.

  4. The fourth topic involved a discussion about what happens next, which ultimately boiled-down to what the doctor was hoping to refer to as the four Ds: disease, donor, fitness and desire.  Even the slowest amongst you will have noticed that one of those is lacking a 'D', so until someone can think of a 'D' for fitness, then it's actually three Ds and an F.  To date, the best alternative to 'fitness' I've thought of is 'condition', which at least actually has a 'D' in it!

    The number of Ds aside, the mnemonic is intended to help with remembering what is required for the Allogeneic Stem Cell Transplant to be a possibility: "Disease" represents the need for having the cancer under control; "Donor" highlights the requirement for having someone that can donate suitable stem cells; "Fitness" emphasises the patient must be well enough to cope with the treatment; and "Desire" illustrates even if all of the other criteria are to the doctor's satisfaction, the final decision about whether to proceed ultimately rests with the patient.

    Whether my cancer is under control is currently unknown, but the PET scan arranged for a couple of weeks from now should either show that I'm currently heading in the right direction, i.e. further antibody treatment is required, or that the antibody treatment has already failed or succeeded.  The doctor seemed to suspect that if I'm going to get my cancer under control, I will probably require six treatments, and at the point of the PET scan I will have only had four, hence the prediction is that the Allogeneic Stem Cell Transplant would be more likely to take place in January than December, particularly given that December is currently fully booked.

    An unrelated stem cell donor has been found on the register, in the form of man that is under thirty; Such a donor has an increased probability of achieving a positive outcome.  I assume that exactly how good of a match this donor is for myself is not fully understood yet, as whilst at the hospital in Leeds I had numerous blood samples taken, and I was given the impression that at least some of those were intended for performing detailed matching, hence at this stage it would seem that only the preliminary matching has been performed.  That reminds me, when the nurse went to get the empty blood sample tubes and came back with both hands full of them, I did wonder if the plan was to bleed me dry, but despite filling all of them (and half filling a faulty one) I still managed to walk to the car and drive home without fainting!

    In terms of fitness, other than being a bit more tired than normal, I feel fine.  However, there is more to it than that, as heart and lung function tests need to be performed.  I have had these done previously, but they were a few months ago now, hence they need repeating.  Also, my last lung function test showed that I was only operating at about sixty-five percent of what would typically be expected, which is definitely on the low side, and would mean that the two year survival rate that I mentioned for myself previously is somewhat optimistic, as in reality it would actually be about half that.  However, only a ten percent increase would bring the two year survival rate back to what was predicted, and it is perfectly possible that my lung function test will show such results this time, as when I had the previous one I was suffering from an infection that was amongst other things causing me to much more easily become out-of-breath.

    That just leaves the question of whether I actually think the Allogeneic Stem Cell Transplant is the best option for me, assuming of course that I meet all of the necessary criteria for having it in the first place.  As you can probably imagine, everything that I've described above certainly gives me plenty to think about, but at the end of the day this treatment is the only one that potentially offers a cure, i.e. the alternative is just palliative care, so whilst there is no guarantee that I will be cured by (or even survive) the treatment, and I could potentially end-up with side effects that affect my quality of life, palliative care still doesn't sound like much of an option.  Either way, the question could be academic, as I need to wait for the various test results first.

Friday, 2 November 2012

Building up to the Allogeneic Stem Cell Transplant

The third dose of the antibody treatment (Brentuximab Vedotin) was nearly two weeks ago now, and just like with the previous doses it still doesn't seem to be affecting me very much (if at all); It definitely continues to be a welcome change to chemotherapy.  Hopefully the cancer is finding the opposite though, as it would seem it had a much easier time than I did with the IVE chemotherapy!

The results of my pre-treatment blood tests also looked a bit better this time, so the doctors decided that I don't need to have any blood tests between treatments now, which is a good thing as it likely means I won't need to have any transfusions.  Unfortunately, I still have to go to the local hospital every week to get the Hickman line flushed and have its connectors changed, so even though I don't need to have the blood tests now the reality is that I'm still driving back and forth just as often.

The actual administering of the antibody treatment was exactly the same as with the second dose, i.e. I had the pre-meds and then the Brentuximab Vedotin about thirty minutes later.  As I mentioned previously, the pre-meds are intended to minimise/treat any reaction, and just consist of: Piriton (antihistamine), Hydrocortisone (steroid) and Paracetamol (analgesic and antipyretic).  I assume the Paracetamol is more for its fever reducing (antipyretic) than pain relief (analgesic) properties.  Either way, I never had any reaction, so after waiting for a bit (in case of a delayed reaction), I was done.

The whole process (blood tests, doctor consultation, and finally treatment) went a fair bit quicker this time, as I didn't spend anywhere near as long hanging around in waiting areas; Having said that, I still spent about five hours at the hospital.  The length of time typically spent at the hospital did actually come up in the doctor consultation: the nurse that joined us commented that it does seem like a long time for what is ultimately just gearing-up for a thirty minute antibody treatment; I mentioned that I seemed to be doing quite well so far on this visit, as I was currently about two hours ahead of my last visit, but just as those words left my mouth I realised that I'd likely tempted fate, so I did joke that, having just said that, the nurse could probably now wave goodbye to me on her way home.

The nurse that joined the doctor and myself in the consultation was actually my former key worker (the point of contact for a case), hence we have seen/chatted to each other on many occasions over the last few years (particularly earlier on, before she changed job roles), and consequently we have gradually got to know a bit about each other - You do have a tendency to get to know a few of the patients and staff over time.  The reason that I mention it though is that in terms of the staff it can be a bit odd in a way, as at some point you can start to think of them as more like friends/work colleagues than the staff looking after your treatment - I guess that's not too surprising when you consider that at some stages of the treatment you may even see them more than your friends/work colleagues/family.

Whilst you're frequently undergoing treatment, you do get used to seeing the same patients and staff, and that is probably a good thing really, as: it can help to lighten the mood by joking about things (despite the circumstances); generally give a less clinical feeling to it all (for everyone involved); and provide the opportunity for sharing experiences (with someone familiar with what it is really like).  However, once you have had all of your treatments, assuming of course that your treatments are successful (you're in remission), it can then leave a bit of a gap, as all of the people that you gradually got used to seeing are now either: someone that you just bump into once in a blue moon, or someone that you only see occasionally when going for check-ups.  Obviously, this coincides with wrapping your head around the idea that your treatment is finished now too, assuming the disease doesn't ever relapse, hence it can prove to be quite a lot to adjust to all at once - Particularly when considering that friends/work colleagues/family tend to stop asking whether you're feeling okay as much now, as they know you're fine, so even though the constant asking may have previously bugged you a little you can start to miss it a bit, as what with everything else that is going on you can feel a bit disconnected.

Finally, getting to the title of this post, the doctor consultation did also bring to light a slight change to my treatment plan, as the intention now is to have a PET scan after the fourth, rather than the sixth, antibody treatment; The idea being that if the PET scan shows the treatment has worked well enough for me to proceed to the Allogeneic (from a donor) Stem Cell Transplant, then I would ideally do so immediately, in order to avoid the disease from progressing whilst I wait, so that could potentially mean being admitted to a hospital in Leeds, which is different to where I've had all of my previous treatment (a necessity due to facilities etc), in December.  I guess that means that Santa's present for me this year could be a new immune system!  If Santa could also magically get that immune system into me without all of the associated treatment and side effects involved, it would be much better!

Since the doctor consultation, the PET scan has been arranged for the 22nd of November, i.e. in about three weeks, and the results of that will likely be available some time the following week, so by the end of November I may be getting ready to pack my bags for a few week stay in a type of isolation room in a hospital in Leeds.  Before then I need to actually meet the team in Leeds to talk to them about the treatment etc, and I also have to have a few more routine tests done; I actually already have my appointment for the initial visit to Leeds, which is the 5th of November (in a few days), so there will likely be another post in the near future with all of the details that I found out in Leeds.

Monday, 15 October 2012

Was the second antibody treatment any different to the first?

It has been a couple of weeks since I had the second dose of the antibody treatment (Brentuximab Vedotin), and there has still been very little in terms of noticeable (to me) side effects.  The blood tests that I have had since starting this treatment have shown that my platelet count has been gradually dropping though, which is a known potential side effect for a small percentage of patients receiving this drug.  However, the latest blood test results actually showed that my platelet count has started to recover a little, which hopefully means that I won't need to have any platelet transfusions.

I have been feeling a bit tired for the last week or so, which is a fairly common side effect of this antibody treatment, but I'm not really sure whether the antibody treatment is the cause of this or not, as for the last couple of months I've also been prescribed Prednisolone (a steroid) and Lansoprazole (to help protect my stomach whilst taking the steroid), but the dose of that steroid has been gradually getting lower (you can't just stop taking it), hence it may be that getting used to the changes in dose accounts for me feeling tired.  Of course, it is also possible that it is a combination of the two.

The doctors prescribed the steroid as I had noticed a slight tightness feeling in my chest on occasions, hence the aim was to alleviate that symptom by reducing any inflammation.  It did seem to work, but it was hard to tell really, as the dose of the steroid that I was initially prescribed made me feel really hungry, and also often left me feeling bloated, so even if my chest was still feeling slightly tight on occasions I probably wouldn't have noticed it, as the side effects from the steroid were much more pronounced.  To be honest, I actually preferred my chest feeling slightly tight, as it was only a mild symptom and wasn't noticeable very often, so I'll be glad to stop taking the steroid; Whilst I'm not quite there yet, at the current dose (10mg/day), the side effects are pretty minimal in comparison to that of the initial dose (50mg/day).

Note: Since starting taking the steroid, my weight has gone up by about a stone, and most of that was gained in the first couple of weeks (when the dose was the highest).  I'm pretty sure that if the doctors had not been gradually reducing the dose, I would have eaten my way through the local supermarket by now, and would have probably progressed on to chewing my own arms off.  The steroid has some other delightful side effects too, such as giving you a chubby face (affectionately called moon face) as a result of both water retention and how the steroid redistributes fat around the body.

The administering of the second dose of the antibody treatment went pretty much as expected really, in that it was done as an outpatient (in the day unit), was quicker than the previous dose, and I didn't have any kind of reaction to it.  Unfortunately, I still spent most of the day at the hospital, as I had to wait for about an hour for blood samples to be taken, followed by about two and a half hours to see a doctor, and finally another hour and a half for the antibody treatment to be prepared.  The only slightly unexpected thing was that after the treatment I had to wait another hour just in case I had a slightly delayed reaction to the treatment.  I guess that's why they call me patient.

Monday, 24 September 2012

What was the first antibody treatment like?

A couple of weeks ago, I had the first dose of the antibody treatment (Brentuximab Vedotin) in one of the hospital wards; Having the antibody treatment there allowed me to be monitored more closely and over a longer period, just in case I had any kind of reaction to it and consequently needed to stay-in overnight. In total, it took about two and a half hours to administer intravenously (via IV), and I only needed to stay for another couple of hours afterwards before I could go home, as I was feeling fine. It was actually a long day at the hospital though, as I had the usual check-up routine to go through in the morning, and an x-ray shortly after lunch (just for comparison purposes at a later date), before starting the antibody treatment mid-afternoon.

As you may remember from an earlier post, I was expecting to spend maybe a day or two in the hospital ward, as that was how it was initially described to me, but that turned-out not to be necessary in the end, which was a bonus. The hospital where I'm being treated have to date only used this particular antibody treatment with three of their patients (including myself), and one of the others actually had it administered at another hospital, so it is still quite new to everyone really; I get the impression that until it has been used with a few more patients the best setting etc for this antibody treatment, in particular the first dose, is not really finalised/known.

It seems that the first dose of this antibody treatment is typically given a little differently to subsequent doses, i.e. more cautiously, as I was given some saline solution to ensure that I was well hydrated and the dose was administered at a slow speed initially, before gradually being increased to what will become the normal rate for subsequent doses; The rationale behind all of this being to reduce the severity of any reaction, thus enabling it to be treated more easily should that prove necessary. I was also given some other medications (a steroid, an antihistamine, and some paracetamol), which I will have with the subsequent doses too, as they help to minimise any reaction, as well as treat it should there actually be one.

The antihistamine did make me feel a bit drowsy for a couple of hours, but other than that I'm yet to notice any side effects from the antibody treatment, so in that respect it definitely beats any of the chemotherapy treatments that I've had to date. Of course, whether I will start to experience some side effects further down the line, only time will tell, but in the mean time it is just nice to have a treatment that doesn't make me feel worse than the disease. The real question though is whether it is actually killing those cancerous cells, which is hard to say when you feel fine, so unfortunately I won't know the answer to that one until I've had a number of doses, and further tests have been performed to assess how well it is working (if at all).

The plan going forward is for the remaining antibody treatments to be given as an outpatient, and the dose itself to be administered in half an hour without any saline solution beforehand, so hopefully that means I won't be spending anywhere near as much time in hospital for the next few months. Assuming the antibody treatment is working well enough, which will be judged based on the activity (or lack thereof) shown on the PET scan I will have after six doses, then a decision will be made about how many more doses I need to achieve the desired response, as well as to keep the disease under control whilst waiting for the Allogeneic (from a donor) Stem Cell Transplant. During that final stage of the treatment plan, I will get to spend plenty of time in hospital, so I can always look forward to that!

Monday, 3 September 2012

How did I first find out I had cancer?

It's been about a week now since I found out that the antibody treatment was approved, so whilst I wait a few more days for the Brentuximab Vedotin to arrive at the hospital pharmacy and the actual administering to begin, I thought I'd rewind time a little and tell the story of how I was initially diagnosed with cancer; The story takes a bit of telling, so make sure you're sitting comfortably!

The G.P. Appointment

It was early December 2008 when I first started with symptoms, and because they all seemed like nothing at the time I pretty much just ignored them for a couple of months or so.  During that time, there were a couple of periods where I felt like I had picked-up a cold, so felt worse for a bit, but given it was winter that didn't seem all that unusual to me.  The only thing that was a bit unusual was that the colds seemed to take a couple of weeks for me to shrug off, i.e. longer than I'd normally expect.  Eventually I decided I needed to make an appointment to see my G.P. though, as it seemed like my body just wasn't going to sort this one out by itself, as the symptoms were gradually getting worse, albeit still pretty minor really.  Looking back, I should have made an appointment sooner, but I'd never been one for taking medication or seeing the G.P. etc, as historically things had always sorted themselves out, so it was easy to think I'll just give it a few more days and I'll be fine.

As it turned-out, my G.P. appointment was mid-morning on a Monday, so I went to work as normal and just popped-out for what I thought would be a short trip to the local G.P. and pharmacy.  I wasn't entirely wrong, as my G.P. did prescribe me some antibiotics, but after I had listed my symptoms and my G.P. had listened to my breathing, which incidentally highlighted that my pulse was a little high, I was also told I needed to make an appointment for a blood test and go for a chest x-ray.  I was a bit surprised by the need for a blood test and chest x-ray, as it kind of made it all sound a bit more serious than I thought, but the G.P. explained it was routine really, so not to be concerned.  The G.P. did also comment that my pulse being a little high could perhaps be explained by being anxious, and whilst I didn't really feel that way I did wonder whether the unusual breathing you are asked to do when being examined can lead to your pulse going up a bit, so I kind of just assumed it was that.

As requested, I arranged the blood test for a week or so later (the earliest appointment!), picked-up the antibiotics from the pharmacy, and headed-off to a local hospital to get the chest x-ray over and done with.  To my surprise, I was actually in and out the hospital in no time at all really, and even back at work just in time for lunch!  Other than a nurse jokingly saying that if she got a pound for every time a G.P. referred a patient with a lingering cough for a chest x-ray she could be living the high-life on an exotic beach somewhere, nothing was said to me at the hospital.  One thing that did amuse me at this point though was the idea that a blood test requires an appointment and a week or so wait, but pretty much any time you need irradiating you can just pop into a hospital for an x-ray!

The Symptoms

So, what were my symptoms, I hear you say?  Well, the first one that I noticed was a slight cough; It seemed to be triggered more by moving around than anything else, although jumps in temperature (e.g. going outside) did set it off too, but either way it would soon settle down again.  Later on, I found myself starting to itch a bit in the evening (mostly in the lower legs and abdomen, but also on my face too), and sometimes my sleep would be interrupted by night sweats (both myself and the covers would literally be wet).  It seemed like the night sweats were more likely to happen if I went to bed early, which I was now doing occasionally due to feeling more tired than usual in the evening.  During this period, I did also lose my appetite a bit, and consequently some weight, but I never really gave any thought to that, as being off your food is nothing unusual if you are not feeling your best.

The Chest X-Ray Results

I left work a bit late that evening, given the somewhat extended lunch break, and just as I got home my G.P. phoned me to tell me that an appointment had been made for me to see a specialist on Friday, as there was something showing-up on my chest x-ray that needed further investigation.  The G.P. wasn't really saying very much, so I asked whether it was something to be concerned about, and the answer was a pretty clear yes.  I did ask a couple of follow-up questions about whether I still needed to take the antibiotics and go for the blood test, to which the answer was no, but otherwise pretty much left it at that.  After hanging-up the phone I did pause for a couple of seconds and think to myself that really doesn't sound very good, but there was nothing I could do about it, and worrying certainly wasn't going to help, so I just put it aside and carried-on as normal for the rest of the week.

The Specialist Appointment

Friday soon arrived, and my appointment was early that morning, so I went straight from home.  The morning mostly consisted of sitting in one waiting area or another, as other than a blood test, getting weighed and having my height measured, I was really just in a queue to see one of the doctors.  As I looked around the waiting areas, I couldn't help but notice that the average age of the patients was probably at least twice that of my own, so I did feel like the odd one out.  At one point, I did speak to the lady sat next to me, and she explained that she had come along with her son, who was currently a few years post cancer treatment and doing fine, so I shouldn't worry about it all; The lady seemed nice, and her words were clearly well intentioned, but it did cross my mind that, as I was sat in the waiting room, I was kind of being informed I had cancer by a patient's mum!  As it happened, I also overheard a conversation between a couple of patients, one of whom was explaining that she had been diagnosed with Hodgkin's Lymphoma, for which a doctor had told her the front-line treatment cures around ninety percent of cases, hence I learnt a little about the side effects etc as they discussed their experiences - They mostly discussed two side effects that I never actually experienced myself though (nail changes and sore eyes), which I guess illustrates how these things tend to vary a bit.

Eventually, after a good couple of hours waiting, I was called into one of the consultation rooms, where a doctor and nurse introduced themselves.  The doctor: explained that I had been referred by my G.P. for further tests due to the abnormal looking chest x-ray; asked about my symptoms; listened to my breathing; checked my groin, under my arms and my neck for any lumps; and delivered the unfortunate "There's no easy way to tell you this!" speech.  I guess that speech always leads to a bit of an awkward moment, as patients' reactions no doubt vary wildly, but the first thought that crossed through my mind was that you've not really told me anything yet - I don't recollect the word cancer being explicitly used, although the implication was certainly there, as I guess until further tests were done and the results were back there was really only a strong suspicion (not a cast-iron certainty).  The doctor (and the nurse) went on to explain that I'd need to: have a bone marrow biopsy to check for any abnormalities (signs of cancer); a biopsy of the mass in my chest to determine what it is (the type of cancer); and a CT scan to get a much clearer image whilst also checking for any other masses.

You can read a couple of my earlier posts (if you haven't already) to find out about bone marrow biopsies and CT scans, so that just leaves the biopsy of the mass in my chest, which the doctor explained would involve a minor operation by a cardiothoracic surgeon, for which the details would be made clear once my admittance to one of the cardiothoracic wards could be arranged.  I had the bone marrow biopsy there and then, as although I was told it could well prove to be a particularly unpleasant experience, and that I could have it done another time if I wanted someone to come with me or I needed chance to take everything in, I thought I might as well get it out of the way.  That just left arrangements to be made for the CT scan and the biopsy of the mass in my chest.  In the mean time, whilst I waited for those appointments, I would just see the specialist on a weekly basis, so that I could be kept informed and have the opportunity to raise any concerns or ask questions etc.

There were a few other things to address, which didn't require the doctor's presence, hence the nurse and myself moved to another room to cover those.  It was mostly practical things such as exchanging contact details etc, but it also gave the nurse the opportunity to summarise what would happen next and check that I would be fine once I left the hospital - By fine, I mean both from an emotional and physical perspective, as it had obviously all been a bit sudden, and it seemed that the chest x-ray was particularly concerning to them due the size and location of the mass that it highlighted; There was a certain element of surprise that I wasn't a lot more symptomatic, so I think they wanted to ensure that someone was around to keep an eye on me.  The nurse did offer to inform my work that I wouldn't be coming in that day, but it was the last day for a few of my colleagues, due to redundancies, hence I declined the offer and went in anyway to wish them farewell etc.  Also, as it happened, I was living with my parents at the time and they were literally just about to board their flight back from a holiday in Tenerife, where they had been visiting my sister, so there was no-one at home anyway.

The Aftermath

By the time I left the hospital it was early afternoon, but I only had a short drive to work, so it didn't take long before I got there (and ate my lunch!).  As you might imagine, not much work was actually going-on, given it was a Friday afternoon, everyone had only recently got back from the local pub, and it was the last day for a few people, but once I passed on my news that pretty much put an end to any pretence of work that was still left hanging-on.  So, for the rest of the afternoon, we mostly just talked about the chaos that was likely to follow at work, given several members of the team were leaving, and I explained what was next for me in terms of the further tests etc.  I do remember one particular conversation quite clearly though, as whilst I was speculating about how the cardiothoracic surgeon would do the biopsy of the mass in my chest, i.e. was it the kind of thing that could be done with key-hole surgery, one colleague/friend joked that it would likely involve: slicing me wide-open with a knife; firing-up the chainsaw to crack-open my rib cage (prising them apart with a crowbar as necessary); delicately taking a small sample of the mass; and finally folding me back together and throwing-in a few stitches for good measure - It's always comforting to know that you can rely on your colleagues/friends to help put you at ease, and once I finished laughing and had pointed-out that cardiothoracic surgeons tend to prefer glue to stitches these days, there was nothing left to add!

As you may have guessed from reading between the lines, the diagnosis didn't really bother me, psychologically speaking, as I suppose I just assumed I'd have a bunch of tests, followed by some treatment, and that would be that; The idea that it might drag-on over a few years, never mind ever prove to be incurable/untreatable, didn't really seem like a possibility.  Having said that, I have always maintained that I think the diagnosis is harder for the immediate family than the patient, as whilst it may be a cold way of looking at it the treatment either works, in which case there is nothing to worry about, or it doesn't work, in which case the patient won't be around to worry.  In essence, it is those that are left behind that have to live with any unfortunate consequences, and it also those same people that often wish there was more they could do whilst the patient undergoes treatment.

Having informed my colleagues, said farewell to those that were leaving, and in doing so avoided any actual work that afternoon, it was now time to head home.  At this point, no-one else knew about the news I'd had (or even that I'd been to visit my G.P.), so the next thing that I had to look forward to was telling my parents, after picking them up from the airport later that evening.  I decided on my way to the airport that I wouldn't say anything about it until we got home, as my parents were still in holiday mode really, so would no doubt have stories they wanted to tell me, and it didn't really seem like a conversation to have whilst driving, so it wasn't until we were nearly home that I mentioned in passing that I had some news to tell them once we got in.  That decision did prove to make the initial greeting at the airport a bit awkward, as the first thing my mum asked me was whether I was okay, but I guess my smiling at the thought that even the best battle plans don't last five minutes on the battlefield nicely covered over any contradictory visual cues I gave away as I said I was fine.

Once we got home, and started getting the luggage out of the car, I was soon asked about the news; The comment that I made in passing had been ticking-over in my parents' heads more than I realised, as I later found out that my mum had been wondering whether her mum was perhaps not very well.  I explained what I had found out that week, and my parents both seemed to take the news pretty well really - Perhaps because I was calm/relaxed about it.  Neither of my parents slept very well that night though, and they did have a look in a medical encyclopedia, which we happened to have collecting dust on our bookshelf, to see whether that had any more insight to offer.  The nurse that I'd spoken to earlier that day had kindly given me her mobile number, just in case my parents had any questions etc, but it was pretty late by now, so it didn't really feel like an option.  Plus, if I'm honest, I don't think there was much more anyone could tell us at this point, as there were still further tests to be arranged.  That was probably why I decided not to say anything to the wider family until later on.

Monday, 27 August 2012

What is the antibody treatment?

Today marks three weeks since I was informed my Hodgkin's Lymphoma is refractory (no longer responding to chemotherapy) and that my last chance for a cure is an antibody treatment that is not yet approved for general use on the NHS, i.e. requires special approval due to the costs etc involved.  As you can probably imagine, the idea of whether I receive the antibody treatment potentially coming down to NHS budgets is not the most comfortable one, and when it was explained it could take up to three weeks for a decision to be made, it did cross my mind that they might seem like long weeks.

As luck (or not) would have it, today is actually a bank holiday Monday, so although three weeks have passed now I'm still waiting to find out the decision; A nurse I spoke to on Friday afternoon told me that the panel were scheduled to make their decision on a conference call later that day, and that in all likelihood I would find out on Tuesday.  The doctor that had been fielding questions for the panel over the last couple of weeks or so seemed quietly optimistic that the antibody treatment would be approved though, but obviously couldn't make any promises, so I'm kind of assuming all will be well.

To be honest, the three weeks of waiting have passed pretty quickly really, and it's not even been on my mind that much.  I did spend a few hours reading about the antibody treatment in the first few days (a nurse looking after my case provided some materials, and I did some further research online), but after that I pretty much forgot about it.  Although I've been signed-off work since starting the treatment for my latest cancer relapse, I've not really ever struggled with filling my time, so have rarely found myself contemplating (let alone worrying about) what the future may hold; Granted I've spent a fair bit of that time in hospital, and/or feeling naff, but it is funny how quickly you can get used to not working, not to mention find yourself thinking how/why did I ever fit in a full-time job!

So, what is the antibody treatment, I hear you say?  Well, the one that I will hopefully be starting soon is called Brentuximab Vedotin.  There are a few different categories of antibody treatments, each of which work in different ways, but this one essentially locks-on to cells that it recognises as cancer, and then delivers those cells some chemotherapy right to their door!  I suppose in that sense such antibody treatments are a bit like a courier service for chemotherapy, which continuing the analogy makes traditional chemotherapy a bit like the leaflets we all get posted through our doors, i.e. for some those leaflets are useful, but for others they are just an annoyance we could do without!

In case you are curious, some antibody treatments use radiation instead of chemotherapy to kill the cancer, i.e. they lock-on in the same way, but have radioactive isotopes attached to them, and hence are really an especially targeted form of radiotherapy.  The other two categories of antibody treatments take slightly different approaches though: The first essentially paints a target on the cancer cells, by simply locking-on to them, so that the patient's own immune system can then recognise them as cancerous and kill them off, and the second locks-on to the cancer cells in such a way as to prevent them from receiving their normal signal to divide/grow, thereby kind of starving the cancer.

As you might imagine, one of the tricky parts of developing the various antibody treatments is that ideally such drugs need to lock-on to only the cancerous cells.  However, whilst the ideal solution involves finding something unique about the cancerous cells that is not found in normal cells, settling for something that is nearly unique can work too.  The key to the nearly unique scenario is finding something that is much more targeted than traditional chemotherapy, as it just attacks fast dividing cells, and from which the body can easily recover, i.e. repair any damage caused by friendly-fire.

Perhaps not surprisingly, the various types of cancer tend to have different characteristics, and consequently that means when developing antibody treatments it can be necessary to design drugs on an almost type of cancer specific basis.  Due to the complexity of some of these drugs, it can take a long time to develop them, hence that combined with their potential specificity has implications in terms of cost, as well as for what types of cancer there are currently antibody treatments available.

In the case of Brentuximab Vedotin, it works by targeting a protein/receptor known as CD30, which is found on most of the cells in Hodgkin's Lymphoma (as well as Anaplastic Large Cell Lymphoma).  In a clinical trial of this antibody treatment, conducted in 2010, a third of the patients suffering from relapsed and/or refractory Hodgkin's Lymphoma achieved complete remission (no signs of the disease), another forty percent achieved partial remission (at least a fifty percent reduction in the disease), and a further twenty percent achieved at least some measurable reduction in the disease.  It would seem that it was these results that led to the drug quickly being approved for use in the U.S. and Europe, and it currently being available on a compassionate use/named patient basis in the NHS.

For myself, the Brentuximab Vedotin is just intended to reduce the Hodgkin's Lymphoma by enough to enable me to have an Allogeneic (from a donor) Stem Cell Transplant, in the hope that the two types of treatment combined will finally form the cure for my disease.  Consequently, that means I don't need to achieve complete remission from the antibody treatment, but I do need to have a significant response to it, so that the stem cell transplant stands a chance of working.  In other words, the idea is that what the antibody treatment doesn't get itself, and is still around after the chemotherapy (and perhaps total body irradiation) given as part of the stem cell transplant, will be mopped-up by the new immune system I have afterwards; the new immune system being thanks to the generous gift provided by my (yet to be identified) compatible stem cell (or bone marrow) donor!

When the antibody treatment was first suggested to me, given the failed attempt with chemotherapy, and I asked about the percentage cure rates, the doctor seemed to kind of give mixed impressions about the prognosis, as whilst the treatment plan itself sounded better there were clear suggestions that the reality may not be so positive.  However, after reading about the results of the clinical trials of Brentuximab Vedotin, I felt much more positive about it all really (justified or not!).  It may be an odd thing to say, but at this point odds roughly equivalent to flipping a coin don't seem so bad to me!

Saturday, 25 August 2012

How can I donate stem cells or bone marrow?

Since my latest relapse of Hodgkin's Lymphoma, and the doctors informing me that my treatment plan involves an Allogeneic (from a donor) Stem Cell Transplant, a few people have asked me about how they could donate stem cells (or bone marrow), so if you are interested in becoming a donor and would like to find out more information, or you are just curious about what is involved, then read on!

Before I explain the donation process itself, I should probably provide a little background on where stem cells (and bone marrow) are located in your body and what they actually do.  Bone marrow is the flexible tissue found in the centre of all of your large bones, and is where stem cells are produced.  Stem cells develop into either: white cells to fight infection; red cells to carry oxygen to and remove waste from organs and tissues in your body; or platelets to stop bleeding (e.g. if you cut yourself).  Should you donate stem cells (or bone marrow), then a sufficient amount is collected (by methods explained later), and much like with blood donations your levels soon return back to normal.

When a patient is in need of an Allogeneic Stem Cell Transplant, finding a suitable donor is one of the very first steps, and this involves tissue typing.  Tissue typing is the name given to the process of matching the patient to the donor; This is necessary as in all likelihood two randomly chosen people are extremely unlikely to be compatible for transplantation.  With Allogeneic Stem Cell Transplants, only about three in every ten patients find a match amongst their family, and for the remaining patients it is necessary to search the various donor registers for a match.  Countries around the world maintain their own donor registers, but they collaborate to find matches, hence whilst searches will likely start with donor registers close to home, it may prove necessary to search world-wide to find a particular patient a suitable match, as some patients have rare tissue types.

Note: My sister was tested to see whether she was a match for me, which she was not, but that was probably a good thing, as I'm not sure whether I could have afforded her quoted price per stem cell!

Whilst not everyone can register as a potential donor (factors such as age, health and medical history need to be taken into account), a lot of people can do.  For the majority of people that do register, they never go on to be an actual donor, as a patient requiring their tissue type is never encountered.  However, donors have been known to donate more than once, at their own discretion of course.

In the UK, you can join one of three registers, and they are operated by the Anthony Nolan charity, NHS and Welsh Blood Service.  For simplicity I will focus on the Anthony Nolan charity, as it doesn't also require you to be a blood donor; However, you may wish to consider the other registers, for reasons such as the different age restrictions.  The registration process for the Anthony Nolan charity involves a fairly short medical questionnaire that will probably take you around about ten minutes to complete.  After successfully completing the questionnaire, you will be sent a saliva test kit, which once returned can be used to determine your tissue type and record the results (along with your details) on the register.  You do have to be aged between 16 and 30 to register, and you need to pass the medical exclusion criteria.  There are no costs involved to yourself, and should you ever become an actual donor, any travel and hotel arrangements will also be made for you.

Note: The saliva test kit enables preliminary matching, and should you appear to be a match for a patient, it will be necessary for some blood tests to take place to ensure that you are definitely a match, and that you are a healthy donor, e.g. you won't pass any infections on to the patient.

When it comes to the process of donating itself, there are two methods available: The first of the methods is a bone marrow harvest, and the second is a peripheral blood stem cell collection.  The first tends to be favoured for donating to younger children, and clinical trials have suggested that it results in a slightly lower probability of the patient developing chronic graft versus host disease (cGVHD); GVHD is where the donor's stem cells (or bone marrow) produces white cells that attack some of the patient's organs and tissues, due to it incorrectly identifying them as damaged, foreign or an infection.  The second is the least invasive of the methods, is by far the most commonly used, has the advantage of the patient recovering from the transplantation quicker (typically by a few days), and clinical trials have suggested that it results in a lower risk of the transplant failing to take.

The bone marrow harvest method, which is the most invasive of the two, involves the donor going into theatre, having a general anaesthetic, and finally a large needle being inserted into their hip bone (in the lower back) in order to extract sufficient bone marrow.  The general anaesthetic will avoid any pain being felt during the procedure, but once it wears-off some discomfort may be noticed for a few days, which can be masked by taking some paracetamol, if the donor feels the need.  Having had a few bone marrow biopsies myself during the course of my treatment, which involves a very similar procedure, my personal experience is that the discomfort is easily tolerated without painkillers.  Either way, this method involves a two-night stay in hospital, just for observation purposes after the general anaesthetic, hence you will be well looked after, before finally returning to your normal life; You may wish to have a few extra recovery days though to fully recuperate from the procedure.

The peripheral blood stem cell collection method, which is the least invasive of the two, involves a two step process: The first step requires having an injection in the stomach for a few days (each administered by a nurse at your home or office), so that the stem cells are encouraged to migrate out of the bone marrow into the blood stream, thus allowing them to be collected in the second step.  The second step involves having a small cannula inserted into both arms, one for extracting the blood, and another for returning it; Inbetween the blood will go through a machine that will filter-out the stem cells, so that they can eventually be donated to the patient.  The daily injections are similar to having a vaccination, i.e. you hardly feel anything, but they can cause some bone/joint/lower back pain that without taking paracetamol can be quite painful.  Having experienced this myself on a few occasions (when taking a single concentrated dose, rather than the lower daily doses), I know how much it can hurt, but the good news is that paracetamol is amazingly effective at masking the pain, so if you do start to feel any slight discomfort from them, you can be confident that you will be fine if you take some paracetamol.  The filtering of the stem cells is an uneventful process, which takes around four hours or so to complete, during which time you can just sit and read or something, as you won't feel a thing.  It is sometimes necessary for the donor to go through the filtering process a couple of times (once per day), as sufficient stem cells are not collected on the first attempt.  When I went through the process myself, more than enough were collected in one session, which I believe tends to be the case (especially for younger males), so it was all over and done with pretty quickly really.  Once the filtering is complete, you are free to return to your normal life; You will likely feel fine, as the side effects from the injections wear-off pretty quickly, i.e. typically within about twenty-four hours.

Note: For both methods, the donors on the Anthony Nolan register will have the in-hospital procedures at a specialist collection centre, usually in London.

Which ever method is chosen, you will likely come out of it thinking that was much easier than I expected, as neither are anything to worry about.  Even better still, you will probably be feeling proud of yourself for donating your stem cells (or bone marrow), and potentially saving someone's life!