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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.


  • Hi LolaB
    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 Peter, I hadn't thought of that but I think I will give them a call ... Everyone is telling me to be positive but I've waited so long for this so to get this far and then have this happen but not be able to speak to anyone for the next few days is awful, for me and my family. We were all preparing for transplant.

    Thank you for your support
  • I guess from the hospitals point of view they may just be being cautious about putting you through a transplant if it isn't necessary at this stage. Perhaps they have an indication that your illness has a low risk of returning and that the treatment you've had so far has worked.

    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 Steve. It's been a complicated journey to this point.... Nearly eight years of a transplant being a distant possible option as I have Bone Marrow Failure and a related rare blood disorder - having both has seemed to make my options far more complicated along the way, and we have now exhausted all avenues (or so we thought) so to get so near and yet all of a sudden so far is unsettling... Such a roller coaster! I'm trying avoidance tactics today... I have a VERY clean house now! Roll on Thursday......

    Thank you for your support
  • Hi Lola,

    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!

  • Thank you... I really really appreciate it. I am pacing A LOT and counting down the hours! But it has really helped to just know that there are people out there who just get how this feels... As you say whatever happens it will be for the best at this point in time.... a friend gave me a card recently that says 'everything will be ok in the end and if it's not ok, it's not the end' I'm thinking there's sometimes a lot of truth in that...

    All the best for your journey too, best wishes

  • Where to start? It seems the BM results have caused a pause in proceedings as I would now need higher intensity chemo than previously planned for pre transplant - in my case this makes it all a bit complicated (I have 2 BM related conditions but neither are cancer so I've not experienced chemo at all so far). So I left yesterday with instructions to start Prednisolone and Aciclovir straight away, and give it a month or so - still on the transplant list and still got my donor so that's the positive I guess. I've had Prednisolone before years ago but no experience of Aciclovir.

    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
  • Hi Lola,

    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,

  • Good luck, Lola – before you know it that month will have flown by and you'll find out whether it's time to push the 'go' button... Aciclovir has always been a pretty standard med for me, the effectiveness of which I didn't realise until I got shingles two weeks after stopping it! I've now come back off it (today) so hoping not to have a repeat performance.

    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,
  • Hi Lola sounds like you have been on a rollercoaster in your work up to transplant i originally thought my transplant would be September but its looking like end of October the time does fly by before you know it!
    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
  • Thank you all, i can't say how much comfort it's given me having this forum - I'm back at the hospital tomorrow so am pacing again! Somehow it's been two weeks on new meds already so hopefully we will have something to look at... Steve you are so right about water soluble aciclovir though - YUCK!

    Thanks Becky I wish you all the best for your journey too.
  • Thank you George - hope everything is going well with coming off the aciclovir for you, best wishes
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