Stem Cell Transplant update

[Scaredy_cat]

I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around. A fortnight ago they looked good at 75, having been in the 30s or below but today they are 37. I hope they will begin an upward trajectory soon. I don't appear to have any GVHD and my neutrophils are no longer a worry. I am now 70 and have physically coped well but i didn't have any comorbidities to start with otherwise they may not have thought me a suitable candidate. Psychologically it was a different story and would urge any one contemplating a sct to consider this. With hindsight, I should have started antidepressants sooner

[mhos61]

Your story is an inspiration, especially for the older MPN patients (myself included). So pleased to hear that everything is going well for you.

Was the potential for psychological issues discussed at length before you undertook the procedure? I imagine it’s something everyone must go through to varying degrees.

Hope everything continues to go well for you!

[Otterfield]

I am so pleased to hear this. My platelets are jumping around too but the consultant doesn't see that as a problem so I try not to worry about it.

I agree that the psychological impact shouldn't be underestimated - those weeks in hospital are so uncertain and lonely. Personally, I would hope that nobody is put off by that though, because SCT is such a miraculous, life saving procedure.

Overall, well done! You did it and I feel proud of all of us who do. Jennie

[Mazcd Partner MPNVoice in reply to Otterfield]

you are all an inspiration to other people, well done all of you. Maz x

[ainslie]

Congratulations, it’s sounding good, I smiled when you said you are having too much energy, perhaps you put it in a bottle and send us some 😀, can I ask you where you had it done and who the docs were.

[Scaredy_cat in reply to ainslie]

Bristol Haematology and Oncology hospital. My consultant was Dr Dayama

[Dodders]

Good to hear that the post STC recovery is going okay. My platelets have remained at or around the 80s since my SCT (June 2019) and whilst not normal they are stable.

I was interested in your comment about psychological issues as it's not something I've ever thought about, or indeed was ever mentioned by any clinician at any point other than perhaps the pre-SCT words said by the consultant that '...it is a very arduous thing to go through..' Apropos this I was talking to a hospice nurse about the tough 6 months or so that I went through post STC and she asked if I'd had any counselling. As I say I'd not thought about any psychological after effects and so her question got me thinking. I don't think I've any such issues (PTSD?) but it must be a consideration especially if the road to recovery is a very hard one. I think it is something that anyone who has such an arduous treatment should be given advice and offered help if needed. Good luck with your continued recovery.

[hunter5582]

Glad to hear that the recovery is going well. Your thoughts on managing the psychological impact are insightful and helpful.

Wishing you all the best moving forward.

[Simon96]

Well done on your progress so far. Coming off steroids is another major milestone!

You may find that the steroids have been affecting you and your adrenal glands more than you realise. It can be psychologically tough coming off steroids. Brace yourself for a couple of tough weeks while your hormones re-balance. They will. Hang in there. It's well worth it!

[ConniesDad]

Hi. It’s interesting that you mention the psychological aspect of SCT. It wasn’t mentioned by my consultant either. I’ve been on an emotional rollercoaster for the past 3 years since diagnosis and this seldom gets mentioned. I guess it didn’t help that I was diagnosed at the start of the pandemic and struggled to get to grips with the remote consultations and lack of access to my gp

Having met my own mortality head-on and been cast aside by my employer as no longer useful (although they were very caring and supportive) I am now a very different person to what I was before.

[UKZA]

Hi there, all of your stories and honest insights into the world of a SCT are a inspiration. It is so strange that you mention the phycological aspects, as my life feels like an emotional rollercoaster right now and it is really difficult to explain. I don’t want to upset or burden my family as I feel guilty enough for putting them through this and the consultants attitude is go out and enjoy the next couple of years till you need a SCT, have fun! I an a hugely positive person and am doing this but it feels a little false and there is a huge black cloud hanging over my head. I am also so undecided if I even want a SCT as I am terrified of what it will do to our lives, jobs, animals, grandchildren etc. So thank you for sharing, I actually don’t feel as isolated now , nor do I feel quite like I am going mad. On the positive, I am journaling my journey, and this is a remarkable help to me. Take care. Penny

[Otterfield in reply to UKZA]

Please don't feel guilty about putting your family through all this - being ill is not your fault. If you feel able, do tell your family how you feel. And please don't let family considerations affect your SCT decision. For a while, life was very different for me, very disrupted, perhaps for about 3 to 4 months, when my husband had to take over all the housework etc. as I was very fatigued and had to be super careful about hygiene. After that I gradually improved and, apart from being unable to socialise etc, life now at 11 months on, is pretty good.

I had that same black cloud over me and, although I'm still being checked thoroughly at the hospital and I still live with anxiety, I am incredibly relieved to be free from that cloud.