Stem Cell Transplant Journey


November 2015

Day +85 Back to Anthony Nolan

It’s yet to be confirmed officially but unofficially I’ve been informed that it is the belief of the medical team that the transplant (graft) has not worked. Following in the trend of the +30 and the XY FISH, the +60 showed a continuing reduction in the presence of my donor, approximately 20%. Taking into account that I’m now at +85, logic suggests the presence of the donor will be even less and most likely beyond salvaging. Therefore another chimerism test was taken to access the current levels of the two of us. It is anticipated that this test will confirm the graft hasn’t worked; already the medical team has started to put measures in place based on a worst case result. Anthony Nolan has been informed and in turn they have contacted potential donors.

Although the chimerism test was marked as urgent, it will take a couple of weeks for the results to come through due to the complexity of the test. In the meantime I’m being weaned off cyclosporine in case there is a chance, all be it very slight, that he might to make a comeback. Weaning off the cyclosporine is also in line with what would happen should the final decision be made that I am officially to have another transplant. Once I’m off the cyclosporine, there is a six week period between being off the drug and proceeding with the next transplant which is likely to take place at the end of January.

A number of factors regards the transplant will be reviewed before going ahead with it. Such as, stronger chemo, maybe even some irradiation, maybe changes to my drug regime etc. A steel bridge can be engineered with precision but the human body isn’t something which is so predictable. We don’t all respond in the same way to drugs, alcohol, sunlight etc. Hence, why the conditions of my transplant will be carefully reviewed.  I am under no illusion that should it go ahead, it will be a much tougher regime than the one I went through in August.

Remember that deck of cards I mentioned in my last blog? It’s safe to say, I’m on hold regards picking up the cards. Should the transplant occur in January 2016 and work, then it will probably be May before I’m in a position to consider ‘getting on with life’. To describe the situation as frustrating would be an understatement, especially when I feel well within myself. I know should the latest chimerism test come back as expected, I have to just suck up my frustration, wait patiently and get on with the procedure. I’m in no doubt that to go ahead with the procedure would be the right thing to do.

It’s not just back to the drawing board with regards the transplant, I have to review my finances as it’s looking as if I won’t be able to return to work until May. That will mean that I won’t have worked and therefore earnt a penny for over twelve months.  It’s a heavy burden juggling the day to day stresses of life at the same time as having your health as a twenty four hour job. For now I shall leave that woe until the next step is ratified.

I am deeply disappointed, however I view this as a setback and up until now I’ve been very fortunate to have not had any setbacks. I despise the thought of another Hickman line, I’m gutted that just as my hair is returning it will go overnight with the chemo, I’m nervous about how strong the chemo will be but I figure I’ve been endured it before so I can endure again. The staff at Barts are lovely, they’ll hold my hand throughout and do their upmost to make this transplant work.

Whilst I wait for all the above to unfold, I shall make sure my time is fruitful by continuing to work on plans to raise money for Anthony Nolan, after all this is will their second precious gift of ‘hope’ to me. There was a silly saying when I was a child ‘first the worst, second the best’ I’m hoping that is the case because the third had a hairy chest!!!


Christmas cake to be raffled off to raise funds for Anthony Nolan

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Day +77 Deck of cards

My joints feel a little less aged this week which is a blessing as I am now suffering, like many, with a common cold. I have literally watched one box set after another for the last seven days, at this rate; I’ll have to get myself to the optician to have my eyes checked out!

I’ve been very keen to discover the results of the Day +30 chimerism test (evaluating the extent of the mixture of donor and recipient DNA in my blood) It’s hard not to feel that as long as Rachel bone marrow exists I’m a ticking time bomb. They were finally available in time for my meeting with the consultant last week however sadly they aren’t quite what we were hoping for. They presented approximately 50% engraftment, which is borderline with the desired range at Day +30 therefore the consultant has requested my Day +60 chimerism test is processed urgently and that the cytogenetic laboratory perform an XY FISH (chromosomal probe on a cross sex transplant) on my bone marrow sample taken on the 12th October. Although the consultants do not want 100% engraftment too soon they want the process to occur faster than it is in me due to the risk of the leukaemia making a comeback. The decision was taken to start to taper off my ciclosporine drugs (used to prevent transplant rejection) which is earlier than in the ‘normal’ situation however it is hoped this will encourage Superman’s cells to crack on with taking over my bone. I’m rather out of my depth with the new turn of events when it comes to providing a medical explanation in layman terms. I’m sure my education will continue in clinic this week when I trust they have the Day +60 chimerism results.

I guess the downside of having a teenage donor is their typical sluggish teenage attitude!

Although the results aren’t what we had hoped for they could be considerably worse. It grieves me to say it was confirmed last week that a fellow patient has relapsed therefore I’m holding onto the positives. I’m in remission and have a fabulous team focusing on what is the right thing to do. Many people believe that everything will be alright now that I have had the transplant, I was never under the impression that everything would be alright until I hit the twelve month mark, I suspect I was more prepared for further illness rather than the emotional / psychological aspect of the ups and downs post-transplant. For example get the kitchen refurbished this year, then save for a fantastic holiday in 2017, squirrel away as much as possible for an early retirement whilst trying to pay the mortgage off asap etc. I think of life as a deck of cards, you put them in the order you want them to land on your table, you spend a lot of time ensuring they are in the right order, reviewing the order with the curveballs life throws at you. AML just hit the whole deck so hard the cards flew up into the air and landed here, there and everywhere. In April I was officially in remission nevertheless I still had months of treatment ahead and was awaiting the decision with regards proceeding with a transplant. Being discharged from the hospital post-transplant was the first opportunity I had to survey the cards which were scattered far and wide. I’ve started to pick the cards up even so putting them into any semblance which reflects my hopes and dreams is a difficult process. I don’t want run before I can walk subsequently knocking my wellbeing and morale, at the same time I believe goals are beneficial.

On the subject of ambitions, I’m spending my time off thinking about how I can help Anthony Nolan. I’ve registered to be a volunteer with them; I’m eagerly awaiting news of the first event I will be assisting with in 2016. I’ve also set myself the challenge of raising much needed funds using the Yorkshire Three Peaks challenge as my excuse. Last week, I received a shockingly wonderful email from JustGiving stating that my target of £1000 had been achieved. I genuinely thought the email was an error, as the money raised was at £105 the day before. A very kind hearted generous person gave a single donation of a £1000. After the upsetting news about my fellow patient combined with the Day +30 chimerism results, I can honestly say this put a GIGANTC smile on my face. Consequently I’ve upped my target to £2000 and I’m tempted to increase the target up to £3000. It roughly costs Anthony Nolan £100 to register and maintain a registered donor, those who register have approximately a 1 in 900 chance of donating. You never know the funds raised may give someone the opportunity to not only put their deck of cards back together, but to be see them unfold as they had hoped.

Amazing, wonderful generous donation enabling me to increase my target! :-)
Amazing, wonderful generous donation enabling me to increase my target! 🙂

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Day +70 Sometimes the healing is in the aching

It’s been a while since I blogged and that’s because I’ve not had a great deal going on medically over the last two weeks. I have been suffering a number of aches and pains in my joints which I am assured are a direct result of the transplant and not the aging process!!! For example I will fall asleep on the sofa, which isn’t quite long enough for my legs to be fully stretched out, at some point I will wake up and my knees will feel as if they have seized up. Straightening the leg is agonising however after stretching and moving around my knees quickly return to normal. The issue is that the joint problem isn’t restricted to my knee joints. My shoulders, my elbows and even my back have all been getting an insight to how old age feels and I won’t lie, it can be painful. There doesn’t seem to be a let up with the aches and pains at present, which is frustrating as it disrupts my sleeping pattern. That said it’s my only groan, compared to many patients I’m in extremely good post-transplant health, so I shall quit moaning.

It’s hard to believe I’m at day 70, I can recall the transplant as if it was yesterday. I suspect however long I grace the earth with my presence, that memory will remain fresh in my mind as if it were yesterday. I’m hoping the consultant will have the results of the Day 30 chimera test this week. The test is notorious for taking a long time and even though the doctors seem quietly confident with the transplant until we start receiving data to confirm Superman is taking over my bone marrow, they aren’t able to say for certain and I won’t be able to tackle the nagging fear that the leukaemia is planning a comeback. The difficulty I personally have is i didn’t feel ill when my bone marrow was being taken over by leukaemia and I don’t feel anything happening in my bones, now. If I’d have an operation I would be able to see the wound healing, feel the skin becoming less sore etc. with this particular illness the patient has nothing to go on physically. I actually believe the transplant is progressing and have every confidence I will become 100% Superman. That said, I suspect every cancer patient have a niggling fear the cancer will return. For me that fear will become more manageable if the test results endorse what the doctors are quietly confident is happening on inside my bones.

I don’t just whine about aches and pains, worry about how the transplant, I do manage to have a bit of fun, too! Aster, my puppy, loves a walk and as we are fortunate to have a national trust area on our doorstep we’ve been enjoying the autumnal colours most days and the added bonus is the walking forces me to move my weary joints. I’ve also started to work on fundraising for the Three Peaks Walk in May, most of the ideas are still to be confirmed so I’m keeping them close to my chest until the ideas are converted into real actions.

I’ve spent rather a lot of time at the hairdressers last week as i have enough hair to dye and it was tidied up into a ‘cut’. Initially the plan was to enjoy the freedom of not having to have sensible colours for work and experiment over the next few months. Sadly, I wasn’t happy with the first experiment consequently decided to return to my pre transplant colour. Having my Hickman line removed, my hair growing back etc. I naïvely thought that I’d feel back to myself when I reached this stage. The more I think about it the more I appreciate I have subtly changed in many ways over the last eight months and now there is a changed me to grow and discover.

 8 months of 'hair styles'
8 months of ‘hair styles’

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