High-Grade Lymphoma 6months post stem Cell transplant- What now?

Life after treatment
21

Any news yet @Paul and how are you doing? Take care

22

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.

1 Like
23

Thatā€™s really good news @Paul. Glad you are on the mend :blush:

1 Like
24

Great news @Paul and very reassuring to hear the service you received, you are never alone on our forum family.

1 Like
25

Hey all

Sorry Iā€™ve not been in touch I had a few setbacks Iā€™ve found hard to cope with. End of may I was told I had relapsed after my stem cell transplant and Iā€™ll 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 itā€™s 3 days a week so itā€™s very consuming. My consultant has said itā€™s been caugh early and is just presenting in the blood as atm my PET is clear.

Has anyone any experience of this at all Iā€™m finding it so hard to imagine my stem cell transplant didnā€™t work after all the hard work.

1 Like
26

Hi @NikWar4 . Itā€™s 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.
Iā€™m glad itā€™s 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

1 Like
27

Hi @NikWar4

Iā€™m so sorry youā€™re having such a tough time at the moment. Iā€™ve 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 itā€™s 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 theyā€™ve gone on to thrive. Iā€™ve 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 donā€™t feel that the whole medical process is failing you because one element hasnā€™t gone as hoped. I think itā€™s hugely encouraging theyā€™ve said theyā€™ve 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!

Iā€™ll be cheering you on from the sidelines. Please keep in touch if you need a bit of support through the next few months - weā€™re all here for you.

All the best. X

2 Likes
28

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

1 Like
29

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.

1 Like
30

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

2 Likes
31

Hi @NikWar4. I was just wondering how you are doing?

1 Like