Just wondering why the consultants are already thinking of matching my mum 63 for a stem cell transplant? They are considering May. Why would that be the case already. She has BCELL ALL, still awaiting the subtype
Many thanks
Marie
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Hi @wallydog, I would say that is a good question for your mum’s consultant in May ( if your mum is happy with you speaking) otherwise your mum might like to ask the question.
Please do let us know how you both get on.
You might both have other questions too and I also find it is best to write everything down.
Others might have other ideas
Look after yourself and please do keep posting
Hi @wallydog,
I hope you’re well and your mum is coping okay with everything?
As part of your mum’s overall treatment pathway, her consultant will be ensuring that all aspects of her care is in place for their desired transplant date. Clinically there is an optimum time for this.
Bone marrow /stem cell transplants are carefully planned out as it is an intensive treatment phase which does take some planning & careful consideration for each patient.
Planning ahead of time for a transplant is a very normal process as it allows the team to be best prepared, arrange stem cell donor ( if required), book a bedspace and also ensure that your mum’s treatment phase is where it needs to be.
In case it’s useful you can read more about treatment options for b-cell ALL here- Acute lymphoblastic leukaemia (ALL) active treatment | Blood Cancer UK.
You can also order our booklet on preparing for a stem cell transplant which explains more about the stages of planning and preparing- Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop.
Should you at any point wish to talk things through with us, do know that our team is only ever a phone call away- 0808 2080 888.
Best wishes, Lauran
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Thank you so much.
I think I’ll call tomorrow for a chat xx
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I was diagnosed with ALL in December and they standard started to get all my details for a stem cell match incase I needed one as it can take several months to get a match. This is perfectly normal and if she doesn’t need one they can cancel but if she needs one they don’t need to wait as long to get a match.
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Thank you Tara. How is your treatment going? I hope your not having too many side effects xx
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I’m on round two of induction treatment. This round is a bit easier than the first but I have terrible headaches all the time and nausea a lot but it’s not too bad all things considered.
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You are on the uk14 aren’t you?
Mum is on the 60+ one and so far not been too bad xx
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Yes I’m on uk14 it’s quite intensive and I haven’t taken too well to some of the stronger drugs and ended up with a deranged liver but this round it’s been a lot easier. Still a long way to go but so far so good.
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Hi Wallydog, I hope you and your mum are coping well. I was diagnosed with BCell ALL in May last year at the age of 66. A complete shock as I had been a regular blood donor for 30 years. Like with your mum, they took bloods to do all the testing for a stem cell transplant when I was first admitted. I started treatment on UK60, then UK60+. Neither worked so then had induction 1 of UK14. That didn’t work either. It was then decided to refer me for CarT therapy. The drug for this was only approved for NHS use in April last year, but CarT is less demanding on the patient than stem cell (or so I’ve been told). I’m now in remission. If you want to know more about my experience with CarT let me know. I hope your mum makes good progress and you are able to stay positive for her. My husband found it harder to cope than I did, but the most important thing is to STAY POSITIVE it really helps. Good luck.
Hi @JoyLA welcome to our forum, thanks so much for sharing your experiences, that’s what the forum is all about.
You also raise a very important point that our diagnosis does not just effect us but also our family and friends just as much, but in a slightly different way.
We should never forget this and the fact that it effects everyone in a different way, we are all individuals, there is no right or wrong
Please do keep posting and look after yourself
Im sorry to hear of your diagnosis.
Where were you treated? Mum is in Wales so unsure if the same treatments will be available to her. Mum will have her bm checked next week after induction and praying she has gone in to remission. Have they given you an idea of future plan or is everything very individual. We arent sure of mums subtype yet they haven’t mentioned it. Was your white blood cell high or low when diagnosed?
A million questions and feel free to inbox me.
Marie
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Hi Marie, I’m praying your mum gets good news when she has her bm. I’m in the West Midlands and had my CarT treatment at the Queen Elizabeth hospital in Birmingham. They also do the stem cell transplants for this region, so wherever your mum would go for a stem cell transplant would also probably do CarT. I’ve progressed from weekly follow-up appointments to monthly and will be monitored for 15 years. My white count was low when diagnosed and the only symptoms I had were anaemia and fatigue.
Take care, Joy
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That’s great news you are doing so well. I’m trying to read positive stories online.
I hope wales can access same treatments as England x
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How are you doing Joy? X
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How are you getting on xx
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Hi Marie, I hope you and your mum are continuing to cope well with treatments and side effects.
I’m doing really well. My BMA two months after Car T showed I am in complete remission. I have much more energy and am back to doing some things I had to give up last year. I had another BMA yesterday and am expecting that to show I am still in remission. The worry is always there but remaining positive and remembering that every day is a day I might not have had really helps.
STAY POSITIVE
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I’m doing ok. I’m fully MRD negative which is really positive, was confirmed at the end of induction. Iv had my intensification and I’m on a break before I start my consolidation therapy June. How is your mum getting on?
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Hi joy
What is this car t everyone is mentioning?
How old are you btw xx
Hi Tara
Mum has started methotrexate today for intensification. How did you find it? Then conditioning next before stem cell xx
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