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!

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.

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!

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.