Hi I was diagnosed with Chronic lymphocytic leukaemia (‘Chronic lymphocytic leukaemia ('CLL')’) over 20 years ago (I’m 58) been on Ibrutinib then Venetoclax which should have been my miracle pill but it didn’t work & the Chronic lymphocytic leukaemia (‘Chronic lymphocytic leukaemia ('CLL')’) was worse than ever. I. March 2026 I was taken into hospital & had various tests to find out why Venetoclax hadn’t taken. Turns out I have a Mutant Cell why is causing lots of problems. I’m now on Pirutinib but have been put forward for a Stem Cell transplant. I think I will go ahead but it’s a very daunting prospect. Would love to hear from anyone that’s had a transplant, the good the bad & any tips.
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Hi @IreneD, and welcome to the forum. What a lot you’ve been through, and over such a long stretch of time too.
I know a number of our members have been through stem cell transplants and I’m hoping some will see your post and share their own experiences with you directly - that’s often worth more than anything else at this stage.
In the meantime, there’s also a long-running thread here where people awaiting, considering, or recovering from a transplant share how they’re finding it which is well worth a browse, and a good place to ask questions too. And if it’s helpful for more practical tips, there’s a much lighter thread here about what people found useful to pack.
We do have some general information on what a stem cell transplant involves here, and our Support Line is always there too if it would help to talk any of this through: 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Sending you all the best as you make this decision.
Ceri - Blood Cancer UK Support Services
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Hi @IreneD and welcome to the forum.
I had an allogenic(donor) Stem Cell Transplant April 2025.
It’s the toughest thing health wise I’ve had to deal with in my life to date.
That said all of the staff clinical and non clinical who supported me through Transplant were amazing.
At no point in my longer than expected hospital stay did I feel unsupported.
When home the recovery phase is slow and hard. Resilience and patience definitely required along with a lot of family support.
16 months on I’m doing well overall.
The discussion about Transplant and risks is very much focused on potential complications.
That said there are protocols for everything so I never felt in danger even when some challenges arose.
Hope that’s helpful.
Take care
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Hi @IreneD
Ceri has kindly linked the long running thread
Two of our forum members @Spangleystar and @Byrnebaby have documented their very recent transplants and are awaiting their day 100
They both have different views and I think you may find it interesting.
Along with the lovely ladies we all have myeloma I have had 2 transplants one not so pleasant and the other much better than the first
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