Stem cell transplant for myeloma

Hi, I was told yesterday that I will be having 4 months of intensive treatment followed by a stem cell transplant if anyone has been though this or has any advice I would love to hear from you
Thankyou
Gill

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Hi @Gill I do hope you’re doing okay. Hopefully you will hear from others who have been through this but also feel free to join this thread here and/or take a look through the previous posts -
Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Forum

You might also find our booklet here useful to order or download - Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop.

I’m sure there will be people on here who can share their experiences around this with you. Take care

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Hi @Gill how are you feeling about that news.
I find the unknown very scary myself.
@Alice_BloodCancerUK has given you great advice and information and yes, there are a lot of people on here that have gone through stem cell transplants.
However whatever our experience or not we are here to support you whilst you are going through the process.
Please do ask your medical teams all your fears, questions, thoughts, medical questions and practicalities.
I go into practical mode and start writing lists !!
Be ever so kind to yourself you might be in shock.

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@Gill I went through a stem cell transplant. I won’t pretend it is an easy experience but it is the best treatment to give you long period of remission as unfortunately Myeloma is not curable. I was very fortunate and had a stem cel transplant in 2007 and am still in remission. I realise that this is not everyone’s experience. The transplant itself initially wipes out your immune system so you need to be careful and will be offered childhood vaccines again. If you look on Myeloma UK website their are lots of support groups for Myeloma and you can search by your postcode. I run a group in Bury, Lancs but they are all over the country.

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Hi there
Thankyou so much for your message, my head is all over the place at the moment , I start my treatment on 2nd August and I’m really nervous , I wanted to talk to people who have been through the same thing I’m so glad things have worked out great for you , I’m going to find a support group near me I think that will help me to
Thankyou
Take care
Gill

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Hi I was diagnosed with Acute Myeloid Leukaemia last March had two rounds of chemo and then told I was having a stem cell transplant in October last year. They have to clear your immune system with various chemos and other drugs before the transplant. The initial part wasn’t too bad I was just very sick even with anti sickness. The transplant itself is just like having a blood transfusion and took about 25 mins. Depends on the number of bags of cells they give you. After the transplant I was seriously I’ll and ended up being looked after by intensive care as I has sepsis and kidney failure. I recovered from both and was discharged 4 weeks and 4 days after initially going into hospital. My taste was awful for months and I didn’t feel great up to Christmas. Come the new year every changed and I felt miles better. I’m now 9 months post transplant and everything is back to normal and the consultants and other staff can’t believe my recovery. There are still a few things I can’t eat but other than that I’m living a normal life and going on holiday next month. The best advice is be positive set yourself goals and that really helps to focus on getting better. Not everyone is as poorly as I was after it and not everyone recovers as quickly. Hope it goes well for you.

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Hi @Muzza

That’s such a hopeful and inspiring post! And I’m so glad to hear you’re feeling amazingly well and have managed to get back to normal. That’s what it’s all about, huh? The process itself can be daunting and pretty unpleasant, but it’s all done in the hope of achieving exactly your outcome - a healthy life worth living. I hope lots of people embarking upon their transplant journey read this, and feel really encouraged and hopeful.

And to add to that hope: Like you, I had a Stem cell transplant for Acute Myeloid Leukaemia too, and I have also made a brilliant recovery. It really is possible to get one’s life back. Transplants these days are getting better and better - so finely tuned. It’s hard to believe when given the risk-focussed and quite scary pre-transplant talk, that actually you can get completely better afterwards - but people really do!

So good to hear this, @Muzza. And I’m so, so happy for you. We’re incredibly lucky, aren’t we?

Very best wishes. :blush:

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Hi @Fullofbeans

The discussion’s you have with the consultants pre transplant are hard to take in and they never seem to be full joy! When you get told that you won’t survive 2 years without having the transplant it was a pretty easy decision for me to go for it.

As you say medical science and the way they can control many aspects of the transplant are amazing and you have to trust the medical team.

Glad to hear you are also doing great @Fullofbeans and enjoying living life again.

Take care

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Yes, not the best conversation I’d ever had @Muzza! Although like you say, what choice is there really?

Have an amazing holiday, btw. I’m off on my first one tomorrow. Yipppeeee!

All the very best. X

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Hey @Fullofbeans and @Muzza have brilliant holidays, you deserve it both of you.
Enjoy

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@Fullofbeans enjoy :sunglasses:

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@Erica Thank you :blush: can’t wait 4 weeks on Monday

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Thanks @Erica and @Muzza!

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Hi @Gill I have been thinking about you and wondering how your treatment is going.
We and the Blood Cancer UK support line are there for you if you need us.

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