Transplant delay

Not much been going on the last few weeks, I havent been on any chemo since I'm well in to remission so I've been feeling good. Still going in for ambisone and various tests and checks in preperation for my transplant. I was given a transplant date of a couple of weeks time but it turns out my donor cannot make a Tuesday or a Thursday and according to the coordinator it has to be one of those days. So they've moved on to my backup donor and I'm currently waiting for the results of the high resolution matching tests to see if this donor is as good a match as the first one.

By the sounds if it there's going to be a three week delay, I was given a date of the 6th for admission to the BMT ward but now its looking more like the 27th. I'm going to see Prof. Marks on Wednesday and by the sound of it I won't be having any more chemo in the mean time, which is great, though a little bit worrying, I wouldn't like to think it's giving the disease a chance to come back, but obviously the Doctors know best.

I've had a few appointments down in Radiotherapy one for a test dose and another to have a mold made of my head. The technician even went to the effort of making the full head mold even though I don't need it... just because I wanted to keep it after they were done with it! One of the Doctor's down in radiotherapy talked to me about the possible and likely side-effects of the treatment. It was another conversation I was dreading really but you've got to hear it, the short-term effects sounded pretty bearable like cataracts, skin irritation and mouth sores (which hopefully should be made easier with the Palerfirmin). More worrying are the long term effects, it was made pretty clear that I'm likely to develop another cancer in the future and he mentioned that the treatment essentially ages your brain so I may develop dementia-like symptoms in a decade or so.

At the end of the day though, if I developed something like skin cancer it is very treatable and who knows what advancements there will be in the future, plus I'd be very aware of looking out for early symptoms. As for the dementia... well... the amount of marijuana a lot of my generation smoke I think I'll be in the majority of 30-year-olds who suffer from that kind of crap.

I was just reading the Leukaemia CARE magazine and there was a story about a 20-year-old girl who was diagnosed with CML in the middle of her degree. She decided to carry on with her work, it made me realise I've really got to find some sort of normality in the 6-months following the transplant, because it is a long time. Hopefully I can spend the time between now and the transplant feeling good and trying keep a relatively 'normal' regime.

Good news

My Doctor phoned with me with the results of my MRD, it came back negative so there's no need for me to have any of the neurotoxic chemo (like the vincristine), so that should mean I get a couple of weeks off chemo. I've got an asparaginase injection on tuesday but thats it really, no more cytarabine, just ambisone.

So I'm in to molecular remission, I've got an appointment booked for a test dose of radiation on the 23rd, I meet my transplant coordinator and have a load of tests (dental checks, echocardiagrams) on the 26th.

Things are moving along pretty quickly, I'm just glad to have a couple of weeks off at the moment, I'm not thinking about about the next stage too much, but I am looking forward to getting it all started. I had a deadline for unversity the other day, luckily my course leader phoned me up to remind me which was good of him, hopefully I'll be able to make the exam date in August otherwise I'll have to do it all again next year.

Still waiting on MRD result

It turns out I haven't had my MRD bone marrow result yet so I don't know whether I'm in molecular remission just yet, still my doctor's already decided I'm not going to have any more of the Vincristine which is good news because between the pain in my feet and the weakness in my hands its really starting to affect me. Hopefully though I'll be in to low risk territory now but either way I have my introduction to radiotherapy and the conditioning booked for the end of the month.

I have to go for a test dose of radiation, they're going to make a mould of my head apparently so it'l keep me totally still when I lay in there. Also I have to have an echocardiagram, dental check and several other checks before it all goes ahead. I'll be meeting with the transplant coordinator as well so hopefully they can give me insight in to what happens next.

They managed to secure me some Palifermin, though we're not sure how much for at the minute, hopefully it was around the originally £3,600 mark... not the £20,000 that was mentioned. Least we have it though, that's the main thing.

Out of hospital again

Well I went back in to hospital last week with a temperature, didn't feel too bad just a bit sick and that but I ended up staying in a whole week on another course of antibiotics. Three infections in three weeks, must be some kind of record, I've spent more time as an in-patient than an out-patient.

I'm out now anyway and after a little while of letting my blood counts recover I'm back on the second half of this chemo regime. So far it hasn't been as bad as last time, the cyclophosphamide made me feel pretty sick but it wasn't as bad as last time. The cytarabine four times a week is okay, again makes you feel a bit sick and you lose your appetite a bit which doesn't help with how much weight I keep losing but I can tell it's not going to be as bad as first half of the regime.

My bone marrow results all came back fine so I'm in to molecular remission now, which is great news. This should mean once I finish this regime in the next few weeks I can start my condinitioning for the transplant, the consultant told me I should be due for transplant in 4-6 weeks but I still need to meet with the doctor in-charge of my case really to find out exactly how we're going to proceed. Chances are once this regime's done I'll be on the full-body and cranial radiation, as well as high-dose chemo, how much of that is done as an out-patient I'm not sure.

I'm feeling alright about it all at the moment, taking it in my stride, my family have all been really helpful with taking me to the hospital and sitting with me and that, it was getting a bit depressing just being sat in this day area on my own every day. I feel like I'm starting to get pretty distant from my friends these days though, mainly because... well I don't have a great deal going on in my life aside from hospital visits and treatment and I don't want to harp on about that to them all the time and when they're all busy organising trips and events etc. it does make me feel pretty gutted I can't be involved. Still it won't be for much longer, that's what I've got to keep in mind, come October I should be able to do anything I want again :)

I haven't been taking my 'clean diet' all that seriously in the last few weeks, going out to restaurants most days with my family. I've been avoiding all the things I'm not allowed, but I was still told not to out to takeaways and restaurants. Plus if I'm honest I've been to more crowded places than I should have been, so I've got to start taking that more seriously really. Although I am still convinced the infections I've caught have been from other ill patients in the hospital...

For the most part though everythings going well, I'm getting a lot of support and there does seem to be an end in sight, even if there is a lot of very daunting stuff to get over first.