Just returned from a pre-transplant clinic appointment where I was provided with two great results: my serum free light chains have reduced to 54, which is fractionally less than last time where the result was 62, and back to the level recorded in March. As far as my consultant is concerned these movements are so slight he considers them to be negligble and therefore my levels are stable. He also had the results of the bone marrow trephine biopsy which is where the core of bone marrow is subjected to some dye which shows up the Myeloma cells (a bone marrow biopsy is made up of bone marrow aspirates where the liquidy bone marrow cells are sucked out and put onto slides then inspected under the microscope, the number of Myeloma cells present is estimated, this is less accurate than the trephine method but, as noted in my last blog, the pathologist reported no excess plasma cells). The pathologist reported that the trephine biopsy also showed no excess plasma cells. This means I have achieved a 'very good partial remission', the only thing standing in the way of me and remission is that my SFLC are still a bit higher than a normal persons, but this is still an amazing result. And this is why my allogeneic transplant is now planned for the week of June 24th!
This has kick started the whole process, meaning over the next three weeks I will again have lung and kidney function tests, another bone marrow biopsy and I will find out shortly when my donor is available to donate giving me a precise date for transplant. I was right in saying that the cells are collected from him the day before I need them. They will be transported from Portugal to me within 24 hours on ice, and 'not by Parcelforce, we have our own couriers' my consultant reassured me.
My consultant also confirmed I will have a 'mini' allo - he screwed his nose up at the term, saying there is nothing 'mini' about it and prefers the term 'reduced intensity' allogeneic transplant. It is very unlikely I will have any radiotherapy as part of the conditioning and will receive a combination of chemotherapy drugs, Fludarabine and Melphalan (again), to knock out my immune system, plus an immuno-suppressant Campath, all to stop me rejecting the incoming donor cells. The Melphalan will be around two-thirds the dose I had before but it will still make all my hair fall out again. I was slightly disappointed with this having read a blog last week of someone about to have a mini allo being told that the conditioning would be a walk in the park compared with that of the auto she had just had, her hair won't fall out and she only needed a tube into her arm (a picc line) rather than into her chest (Hickman line). I am having a Hickman line again, and the Melphalan is being used again because it has been very successful in killing the disease and I tolerated it so well. So there we are, every case is different and I should not assume because one person is having something I will also have that. I am unlikely to be part of the clinical trial I mentioned as this is currently on hold and my consultant does not want to postpone treatment based on getting onto a trial, which is fine by me.
I asked whether the mini allo is less likely to result in a cure as it does not provide the conditioning treatment normally used for allogeneic transplants, which my understanding was a big influence on the effectiveness. I was told that the data to be able to answer that are just not available. How could my consultant agree to a full intensive conditioning regimen, which would increase my chances of dying during procedure, when there is no data to say whether or not this is any better than reduced intensity conditioning? The conditioning treatment is used in this case to suppress my immune system to avoid immediate rejection of the donor cells rather than wiping out my bone marrow and Myeloma, which is what the conditioning is used for in the auto, and my Myeloma levels are very low, so really the reduced intensity should achieve what they want, and my new immune system should do the rest...we hope.
Finally my consultant went through the rather scary side of this kind of transplant which is Graft-versus-Host-Disease, both acute and chronic. Both of these tend to show up in a similar way, generally skin rashes, gut problems and liver malfunctions. Acute GvHD can happen in the first 3 months after transplant, chronic starts later, can be long term and can also affect the lungs. In severe cases the patient can suffer liver failure, or skin that thickens and hardens so much it starts to affect how much they are able to move. GvHD only starts once donor cells have engrafted, meaning once it starts there is no turning back, you can't get your own cells back and it is simply a case of treating it and suppressing the immune system to minimise the effects. When GvHD subsides some people are left with lifelong health issues, but it is worth noting that most people suffer GvHD which is suitably controlled, with no signficant long term problems, and the effects reduce with time as your body becomes more and more your donor's! As this happens the amount of immuno-suppressant drugs is reduced, allowing your new system to take over.
Bizarrely some GvHD is wanted because this means the new immune system is recognising your body as foreign, and the hope is that it will also recognise the Myeloma as foreign leading to the desirable Graft-versus-Disease (GvD) where the new immune system does something which mine doesn't, which is attack and kill the pesky Myeloma cells. And there is this balancing act because the transplant doctors need to suppress the immune system to stop rejection and minimise GvHD, but if they suppress it too much they don't get GvD. If the immune system does not attack the Myeloma cells, then Donor Lymphocyte Infusions (DLIs) can be given whereby my poor donor has to return to donate lymphocytes which are then given to me to boost the GvD effect. It can also increase GvHD too, so these are not given lightly and not during the early stages of the transplant (6 months down the line at least).
Despite this I feel that this is a moment to celebrate, I have officially very, very little disease in me and I am about to embark on what I hope to be the road to being cured. I will certainly be enjoying a few beers over what promises to be a wet, windy Jubilee weekend. I will also not cancel the proposed BBQ, if I did I couldn't call myself British could I?
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