Result! Now to the next one...

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?

One year on

Believe it or not it is coming up to a year since I went under the knife and was finally properly diagnosed with Myeloma. This means that I was due a 12 month check up at the Queen's Med to check on my metal work, I had to take my youngest with me which isn't ideal, but she went happily behind the safety screen while I had my x-ray and just took her shoes and socks off and dropped raisins all over the floor during the consultation, so I can't complain. The news is: it all looks fine; no screws have moved, the front of C7 has not changed (i.e. there are no more tumours and nothing to worry about there) and they are very happy with the progress on my left hand, which is now very close to being back to normal. For anyone who hasn't seen it before here is what my neck looks like now from the side:

There are two set of screws into the two vertebrae above C7 and two sets below, i.e. C7 is in the middle, you can just see a 'pointy' bit at the backs of vertebrae from C6 upwards which is missing from C7, that is the bit that was removed. The front of C7 looks a bit squashed compared to the rest - this is the damage done by the Myeloma and the reason why there were plans to remove it. But it seems to be holding up and there is some bone growth too, and definitely no further damage.

Went to see my haematology consultant last week and there we are now starting to plan the next transplant, as such I am now part of the pre-transplant posse and not the post-transplant losers anymore. The results of the bone marrow biospy I had were not fully in, he only had information from the less accurate aspirates which have the liquid bone marrow on, but these show the presence of NO excess Myeloma, which is an excellent result. The more precise results may show that some Myeloma is there but it will be at worst very low. This, he acknowledged, is the reason for going for the next transplant, strike while the iron is hot so to speak. Serum free light chain levels had risen again the last available set of results, but by very little. I said it was disappointing to see them continually rising still but he said, and I quote: 'I think you are reading more into those than I am'. Which I guess means it is not something to be concerned about.

I had to shave last night, I actually NEEDED to shave. My facial hair has come back in odd patches and with the rather nice dark thick tache I have acquired, I have also started to sprout hair in the middle of my chin. This taken together makes me look like (according to my confidence inspiring wife) a 'magician'. Judge for yourself.

Although this has to be better than how I looked a few weeks ago:

Believe it or not, I was ID'd for a bottle of wine in Tesco's yesterday. After thanking the lady doing the interrogation she informed me that 'you really don't look 25'. I thought that was probably going a bit far and that she was taking the piss, but then I thought: no, it is possible that to a certain demographic of vertically challenged middle aged short sighted ladies I could pass for younger than 25, and this cheered me up. Maybe that's why she did it, perhaps I looked a little sad in Tesco's on a Saturday night with loads of reduced price salad and a bottle of half price vino.

Bic'd

I took the plunge last night and shaved my head with a razor. I had been umming and ahhing about it for days thinking that it would look a bit harsh, but Jo said that from anywhere other than right up close I look completely bald so I might as well do it. I am so glad I did, I think that a smattering of short fine hair is almost confirmation that you've had chemotherapy, but a fully razor shaved head could be a choice - a pretty weird choice for someone of my age - but it isn't so obvious why I'm bald now. My eyebrows have also started to thicken up again after getting really quite thin on the ground, and some of my facial hair is coming back, mostly in the tache area which isn't a good look

There are some benefits to having a bald head: no hat hair when removing hats, moisturising my scalp which is an unexpected pleasure, looking a bit threatening in a checked shirt and skinny jeans (only doc martins needed if you can picture it). But there are also some negatives: I am cold all the time (wearing hats in the house), bashing your head (it seems even a little hair is better then none when it comes to cracking your bald head on the corner of a cupboard), being called a 'big, bald bad boy' by your eldest daughter. Overall I have to say it is not as bad as I was expecting and I really don't mind it. It is weird that as the thing I would say worried me the most before the transplant, when it finally happened I suddenly realised that in the scheme of things loosing my hair was the least of my worries.

I lost about half a stone during the transplant, and I'm likely to loose weight during the donor transplant, and I cannot afford to loose any more so I have been set the enviable task of putting ON weight. I am literally having to stuff my face as much as possible to pile on the pounds as I may not have much time before the next procedure. I don't weigh myself but I have a pair of jeans that I use as a guide to my size and when I came out of hospital they were quite a comfortable fit, but now I exhale involuntarily when I sit down, which is a good sign. It is so odd to eat as much as possible (and then some) and supplement with protein shakes with ice cream in, see weight going on and having to keep going, and not feeling guilty. My overwhelming urge is to stop, or slow down, when I can see my stomach getting a bit blobby again, but I have to keep eating - it's for my own good!

Gone back to work this week, just a couple of days working from home, but my work have provided a couple of projects to be getting on with and it feels great to have a bit of my life back. And hopefully it will make me appreciate time at home a bit more, as we have been spending a lot of time together, and maybe that is starting to show a little! I stand by the fact that one of the biggest plus points of having been off sick for this long is the time I have spent with my kids, which I never would have got if I was working, but you can have too much of a good thing and it really was time to get back and engage the brain again. I have spent all day analysing noise data in spreadsheets and building a noise model of a new hotel site. Bliss.