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!

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