Hi Everyone, my name is Val. I was diagnosed with Chronic myelomonocytic leukaemia (CMML)2 in September. I am currently prescribed Hydroxycarbomide , folic acid and have haemaglobin transfusions every 3 weeks.
I have been offered a bone marrow transplant, possibly at the end of January. Although I left the transplant team in shock, I was positive this was the way forward. However, I am now having doubts. It’s not so much the actual transplant but the long term effects on other organs etc.
Can anyone please share their experience with me and settle my doubts.
Thankyou, Val
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Hi @Val59 Just wanted to send you my best wishes. I’m sorry I can’t give you any practical advice. I’m about to go to appt with my husband on Thursday re his elegibility for a partial stem cell transplant for Chronic myelomonocytic leukaemia (CMML). Altho he is 73 & I’m very concerned that he just won’t be able to cope with it all. But we’re going to the appt anyway, to get the pros & cons! I’m sure there will be others on here that can give you support. Keep in touch & take care xxx
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Hi @Val59
A big warm welcome to the forum, and thank you for your post.
It’s so very understandable that you felt shock after your appointment and that you’re now having doubts. When you’re in an appointment like that, it’s common and natural to find it difficult to take all the information in and to be able to process it quick enough to make a decision. I’m not sure anything could prepare someone, and no wonder you’re now feeling like this.
You should have plenty more opportunity to talk further with your medical team, including the team that would do the transplant. It would be good to write all the questions down that come up for you before then so that you can ask them in future appointments - there are no silly questions, so make sure you write everything down that is concerning you.
Are you able to take someone with you for future appointments? This can be so helpful as another person listening to all the information can help take it all in and make sure you get the answers you need too.
I hope someone here is also able to share their experience to help you with your doubts and feelings. No-one can tell you what to do, but gathering as much information as possible is important to help you make the right decision for you, so I’m really glad you reached out.
Take good care of yourself,
Kind regards,
Ali
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Hi Sisi,
Thank you so much for your best wishes. It’s all so overwhelming, I’m sure you and your husband has felt the same.
I did find the meeting with the transplant team harsh, but appreciate all pro’s and cons have to be discussed (on that day, I did feel there were more cons, just to prewarn you). A few days later, I had my positive head on, thankful I was being given this opportunity. But as I said, doubts have crept in.
I send all best wishes for the appointment on Thursday, and hope it helps you to make the best decision. Val
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Thankyou Val. Yes, you’re so right. Very overwhelming & a real roller coaster of emotions & thoughts. Thank you for the pre warning. Wishing you all the very best xxx
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Hi @Val59 I am glad that you have found us, isn’t it difficult making a decision between 2 unknowns.
I do not envy you.
I found I also had so many fears. thoughts, emotions and practicalities whizzing around to, the ‘what if’s’
Perhaps now is your opportunity to write down all your fears, questions and practicalities to talk through with your transplant team, I think most people need time to think and would want to ask them questions.
I wonder if you have a specialist nurse or other contact you might be able to talk things through with.
I also hope others on here will be able to share their experiences, although we are are unique beings with individual medical histories, who react defiantly in similar situations.
I attach some information from the Blood Cancer UK website for you.
Blood cancer treatment types | Blood Cancer UK
If you would like to talk to someone the Blood Cancer UK support line and nurses are there for you on 0808 2080 888
Take your time, it is your decision, be kind to yourself and please do keep posting how you are getting on.
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Thanks for posting Val. You’ve had a whirlwind couple of months since your diagnosis and now you’re having to face the massive decision about a stem cell transplant before even having the time to come to terms with your diagnosis. As @Erica said, I don’t envy you.
When I was diagnosed 16 years ago, I had to be screened for stem cell transplant and my brother was found to be a match but, luckily for me, my Chronic myelomonocytic leukaemia (CMML) has been stable and so the decision re a transplant has not needed to be made and now I am 74 it won’t be! Which is quite a relief -not only to me but to my brother who’s glad to be off the hook now!
It is right that transplant teams should be transparent with people about the dangers and possible negative outcomes of a transplant - even if that comes over as a bit harsh! You’ll have to be fully screened for your physical fitness for a transplant and they won’t go ahead if anything found indicates too much of a risk. They also won’t go ahead until they’ve found a good match for you so I hope that is underway?
Some hospitals do offer a transplant counselling service to help people decide what they want to do? It might be worth enquiring about this?
The NHS is supposed to help patients make treatment decisions by employing something called BRAN.
Benefits of the treatment
Risks of the treatment
Alternative treatments?
What if I do NOTHING?
That might form the basis of any future discussions you have?
You might find experiences of stem cell treatment on this Forum or similar Chat Forums on Myelodysplastic syndrome (MDS) UK patient support group or LeukaemiaCare. And LC offer a Buddy service whereby they can allocate you a buddy who has had similar experience.
Sadly, nobody can advise you on the best option and I can quite understand you’re swerving between going ahead with a positive outlook and being anxious about the potential risks. Just wishing you all the best at this difficult time.
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Thank you for allowing me to join this forum. Also, for the good wishes, advice and understanding from everyone.
Yes, I’ve been a bit negative the past days. It’s amazing how your perspective can change from week to week.
We have always had horses, so I say to my daughter "I’m back on the horse today " good, positive days or “I’ve been chucked off”.
Its a great metaphor for me.
I would love to keep in touch here.
All best wishes, everyone. Val
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Oh @Val59 you certainly are part of our forum family and never alone now.
I love your horsey analogy and it is so true.
My thoughts and emotions can be logical or illogical, up or down and all at the same time, I reckon that it is natural.I never cried before, now I can burst into tears when I least expect it.
You make sure you keep in contact. I would love to hear more about you.
Be ever so kind to yourself and that horse
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I so love your horse analogy too! 
I find I can be on the horse one minute & off the next. And like @Erica says both at the same time! Sending love & keep in touch xx
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Sending love & a hug to you if you’d like one 
If not now…save it for when you do! xx
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Thanks everyone for the best wishes. Definitely on the horse,today !! Got the Xmas head on…just put the decorations up outside.
Best wishes to all for Xmas, Val x
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oh @Val59 I expect being on your ‘horse’ gave you a bit of extra height for getting those decorations up.
i am definitely not on my horse today as, due to a fall, it hurts when I sit down,
I am very impressed with your decorations.
Really look after yourself