Bm results raising questions
Utterly devastated to have received an email from hospital late last night saying that due to slightly better than expected results from my pre transplant bm extraction it might not be the 'right time to transplant' - I can't get hold of anyone at the hospital to discuss as it's the bank holiday. I'm terrified after getting this far it's now not going ahead... It's booked for beginning of October. Has anyone else experienced similar set backs in their journey pre transplant? I don't know how much say I'll have in the final decision, I'm going to see the consultant on Thursday but it feels like a million miles away.
Sorry to hear what sounds like a set back for you, you had obviously been preparing yourself for transplant.
It might be a good idea to make a note of the questions you have for when you meet your consultant next week and have someone with you when you go to see him. I didn't have such a set back but maybe someone on the forum has and could share their experience with you.
I hope you don't worry too much before Thursday. Don't forget also that you can speak to a member of the Anthony Nolan Patient Experience Team.
Best wishes, Peter.
Thank you for your support
As Peter says, make a note of your concerns and ask your medical team when you see them. They should explain the reason for not proceeding at present and they need to assure you.
Try not to get stressed about it and be positive if you can. Perhaps it's a good sign if your results are better than expected.
Take care and please let us know how you get on.
Thank you for your support
Just wanted to drop you a quick line to wish you luck tomorrow; whatever the outcome, it will of course be the best for you at this moment – although I can understand how frustrating it might be to have built up to something that may not happen after all...
I had a couple of 'setbacks' along the road to transplant: firstly when I was told I'd be having reduced-intensity conditioning instead of full-intensity (which in my mind would dramatically reduce the chances of success, although it turned out to be less significant than I'd feared) and then when my neutrophils were falling right up to the day of going in for the conditioning, and I had to have a bone marrow biopsy because of a very real fear that I might no longer be in the full remission that was by far the best state to be in for the transplant...
Both moments felt like real setbacks until I'd heard the full story and got the full results; in the first case, some dodgy counts for my liver suggested I might be at higher risk during the transplant process, so overall risks were lower with reduced-intensity conditioning; whereas in the second case after a day in or around the hospital biting my nails and fretting about results, my bone marrow showed up clear of leukaemic cells and all was well.
I'm generally pretty good at waiting to know everything before getting too worried, but when you're all stoked up for a major event such as a transplant and suddenly things might have to change, it can be hard to take it in your stride... BUT in my treatment experience, changes in plan only happen when the current plan is no longer the best for you (for whatever reason), so focusing on the fact that decisions are made to give me the best possible chance has usually helped me feel a bit happier about the uncertainty.
Anyway – good luck and let us know how you get on!
All the best for your journey too, best wishes
I'm a bit concerned though that having finished work last week (intending to have a month to myself before admission) I've now got endless days in front of me... That light at the end of the tunnel has just moved! Gosh it's such a roller coaster!
Thank you for everyone's support x
You sound like you're staying positive despite the apparent setback, which is good. You will get there eventually and I'm sure your medical team are doing what is best for you.
It's also good that you have a donor ready to step in when you need them.
I've been on Prednisolone now for about two and a half years, and Aciclovir for about 3 years, since I first started treatment. I'm close to stopping both. The advantage is the Prednisolone are small and easy to take but I've never liked Aciclovir, largely because the brand I've been taking are water soluble so you need to swallow them quickly or you get an unpleasant taste! I now break the tablet in two which I find makes it easier to swallow.
Keep going though, and let us know how things progress. We're all rooting for you.
All the best,
I was hoping/expecting to have my transplant in January, last year, but ended up having it in March instead. The great news was that the delay included 4-6 weeks during which I was encouraged to eat well in preparation for probably losing weight during the transplant process – I certainly made the most of the instructions to enjoy some great meals out in London... although in the end I didn't lose much weight during the transplant process, so have ended up with a net gain! It was worth it, though.
Hope the days whizz by and the meds don't cause too much trouble.
All the best,
As for Acyclovir I have been on it for some years now and personaly have not had any side effects.
Wishing you all the best with your journey
Thanks Becky I wish you all the best for your journey too.