Any news yet @Paul and how are you doing? Take care
Hi Erica, thanks for asking, I felt terrible the first couple of days but once the Paxlovid kicked in I improved very quickly and tested negative yesterday which was day 7. I feel totally fine now. Very grateful to the NHS & CMDU who called me several times to see how I was doing as I live alone.
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Great news @Paul and very reassuring to hear the service you received, you are never alone on our forum family.
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Hey all
Sorry Iāve not been in touch I had a few setbacks Iāve found hard to cope with. End of may I was told I had relapsed after my stem cell transplant and Iāll need 36 rounds of campath for 12 weeks and then a bone marrow transplant. I am a few weeks into this treatment and it been so rough on my system I cannot get thru the chemo without a reaction. High term shaking etc so hard to cope with as itās 3 days a week so itās very consuming. My consultant has said itās been caugh early and is just presenting in the blood as atm my PET is clear.
Has anyone any experience of this at all Iām finding it so hard to imagine my stem cell transplant didnāt work after all the hard work.
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Hi @NikWar4 . Itās great to hear from you and to get an update. That must all be really tough to get your head around and then feeling so poorly with treatment - I can only imagine how you feel.
Iām glad itās been caught early and it sounds like you have a great team around you.
Im hoping others may be able to share there experiences. Remember, we are here, as well as the support line of you need anything at all.
Please take care and just take a day at a time. Keep us updated when you feel able to. In the meantime You will be in my thoughts X
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Hi @NikWar4
Iām so sorry youāre having such a tough time at the moment. Iāve no personal experience of your exact situation or illness, but I did react very badly to the chemo I had for Acute Myeloid Leukaemia. I really sympathise, because it makes you feel truly awful. All I can say is, we have no choice, and so we plough on, and eventually that particular torture is over, and itās a huge relief. Just keep thinking of it as your friend and helper, if you can, and perhaps see the nasty side effects as proof that you are taking a powerful med that will zap the unwanted cells. Eventually, I felt so ill I was able to sleep the worst of it off. I hope you can do the same, as it makes the time pass much faster.
As for needing a second transplant, I have seen plenty of people about on various forums, who have had to go through the second transplant, and theyāve gone on to thrive. Iāve had one transplant, and I do realise they can be gruelling, and the thought of a second must be awful. But sometimes it takes two attempts.
So I hope you donāt feel that the whole medical process is failing you because one element hasnāt gone as hoped. I think itās hugely encouraging theyāve said theyāve caught it early. And offering you a second transplant is not a decision they take lightly - they clearly believe you are strong enough to get through it, and that it has a good chance of working. The odds must be stacked in your favour. You can do it!
Iāll be cheering you on from the sidelines. Please keep in touch if you need a bit of support through the next few months - weāre all here for you.
All the best. X
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Hey @NikWar4 it sounds as if you have a really difficult time emotionally, medically, physically and practically.
It sounds as if you have a good medical team.
Hang in there.
Look after yourself and be kind to yourself
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Hi @NikWar4 so sorry to hear of your relapse. I hope that the treatment goes well and things get better for you. Let us know how you get on.
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So sorry to hear that you have relapsed @NikWar4 and that the treatment is so tough. Please do talk to your treatment team about your worries and of course you are also welcome to call us too: How to contact Blood Cancer UK | Blood Cancer UK
Take care
Gemma
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