Good to hear from you. I am glad the stem cell top up has now been planned and you have a date to aim for. You have had a long time of uncertainty and I know that must have been difficult.
As we have said previously a stem cell top up is very straightforward and depending on were you are being treated should only require a couple of nights stay in hospital. The recovery is nothing like after having a transplant and really you should just get back in to the routine you had before. The stem cells should give your immune system a bit of a kick start which is what it needs and hopefully you will see your counts improving over time. The response might not be immediate so be prepared for that. Obviously nobody wants you to have lots of GvH but this is the main side effect and it just needs to be controlled. Actually having some GvH will be a good thing as this can stimulate the new immune system, so you need to be looking for skin rashes and any abdominal symptoms like diarrhoea and make sure you keep your team informed.
I hope others who have had a stem cell top up post on here to give you a more personal experience. In practice I have been involved with patients that have had good results, who I now see in a late effects clinic as they get back to normality and move on with their lives.
I hope it all goes well Greg and lets us know how you get on.
Hi Hayley,
Many thanks for your support and advice. At my review this week, I have been told that the stem cell top-up has been put on hold. This is because my counts are generally slowly improving. All 4 of the main counts are still below the normal range and have been for over 6 months now. The WBC concerns me the most because this count goes up and down even though I am taking regular gcsf injections. I suppose my question is in your experience is it OK to watch and wait at this stage post-transplant to see if the counts improve on their own? I am 10 months post-transplant now and I read somewhere that top-ups are more effective when done closer to the transplant. I am the sort of person who likes to take action to sort out problems so watching and waiting to see if problems fix themselves does not come naturally. Do you come across examples where people’s counts don’t go back to normal for a long time post-transplant? I suppose I am looking for some reassurance that doing nothing is a reasonable action for me at this point. I am happy to accept that perhaps blood counts are a dark art and no-one really knows why they are what they are, but I just don’t want to be in a position of regretting not doing something if there was something I could have done proactively to get them improved.
Many thanks for your help,
Greg
Hi Gregg,
Thanks for your post. It can happen that if the consultant feels you are improving they will hold off on the stem cell top up and although this is frustrating for you because you have been getting yourself prepared for it, its not a bad thing. If your counts are showing signs of improving, even slowly and they can do so without the top up, this is better because you then have not got to go through the risk of GVH.
If they had already planned the top up then putting it on hold is easy and if they decided to go ahead at a later date, getting the plan back on track should also be straightforward.
I know waiting is one of the hardest parts of this process and we ask our patients to do this all the time, action always feels better because you feel you are doing something. Pre transplant I always tell my patients that they will have to learn to be patient whilst they recover and in some circumstances, like yours, its a massive understatement. 10 months later you are still experiencing problems with you counts and you are still being asked to wait. However your transplant team have lots of experience and will be making decisions using that experience and for your best interests and yes I have also seen this with patients that I have worked with. Maybe view the not giving the cells as a form of action, a plan is still being made its just had a slightly different route than what you thought but the goal is still the same. You are in fact making progress.
Hang in there, and keep your focus on staying strong and keeping well.
Hi Hayley,
Many thanks for your support with this. I had a good talk with my consultant today and he allayed my fears in that he said that it is mainly when you are doing a DLI that it can be preferential to do it closer to the transplant, and with a stem cell top-up, it doesn’t really matter when you do it post-transplant. So that helped me with my lack of patience! And as you say, the really positive thing is that the counts are improving so things are headed in the right direction - my blood count graph is finally beginning to look like a U-shape! And I am feeling a lot better within myself than I was a month/6 weeks ago, which has got to be a positive thing.
Thanks very much for your support!
Greg
Hello Greg, I’ve read through this thread and I feel my husband is travelling along a similar road to you with low blood counts, I’ve spoken to you before and here I am again, John my hubby is on day +144 and all his counts are dropping he is neutropenic with platelets of 44!!! He is having a biopsy this Wednesday to check on chimerisim and to see what’s happening with counts! Consultant has rang us to say she has looked at Johns blood under microscope and it doesn’t show anything that shouldn’t be there!!! But obviously the biopsy will tell us more!! I can see you’ve been through this worrying time that’s why I’ve commented on this thread! Thanks again for all support.
Kind regards,
Tracey
Hi Tracey,
Thanks for your post. I really hope you get some positive results soon. I really feel for you as the period when i was writing these posts was the worst in my whole life, much worse than the transplant itself. All sorts of thoughts clouded my head. I think the only thing you can do is watch and wait, do the tests and follow whatever the specialists tell you to do. If it is any sort of comfort, my platelets got as low as 20, HB in the 60s and neuts 0.something (sorry, I can’t quite remember). My chimerism dropped to about 80% i think. The doctors kept plugging away and about 8 months in something worked. We are not sure quite what, but something clicked in and they started to improve. Just over one year post-transplant, I am now back to work and feel as good as I have for a long time. So as clichéd as it might sound, the only thing I can say is keep hanging in there, keep striving, keep plodding on, no matter how horrible it gets. Try to get the balance right between wanting to make things better and letting things be. I know that sounds easy written on a page, but I reckon that’s all any of us can do. And it definitely can get better, no matter how long it takes - I am living proof of that.
Sending best wishes to you and your husband and please keep us updated. I know everyone has an individual journey but I think I speak for many on here that we understand some of what you are going through and we really want to help in any way we can.
Greg
Thank you for your detailed reply Greg, yes it is definitely a time to watch and wait biopsy is set for tomorrow just want results back from that. Thank you again for all support
Kind regards,
Tracey