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.