Hi, I am being offered a bone marrow transplant and wonder if anyone can offer me positive advice. Obviously the process is quite scary, but would like to think I'm doing the right thing.
Thank you
George
Bone marrow transplant : Hi, I am being offered a... - MPN Voice
Bone marrow transplant
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Georgehb
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Hi George,
Are your symptoms really bad?
My husband said he wouldn't have a stem cell transplant or less it was his last hope he's 50 now and is managing well on ruxolitnib.
It's a lot to go through a stem cell transplant. You have to do what's best for you.
Tracey
Hi Tracey, it is the last option. It's either the transplant, or wait to die over the next 6 to 18 months as my leukaemia progresses. Believe me, I would rather not have to go through it.
George
Why are they offering you a SCT? What was your BMB result re fibrosis/collagen? And spleen size?
My understanding from other forums is that blasts can be quite variable. Are they are tracking higher than 7%? One result seems a little premature to go for STC…
Hi Paul, they are offering a sct, because I have leukaemia cells in my bone marrow at 8%.
George
Given your circumstances, a SCT sounds like it may be the best option. Very scary though. Others who have gone through it or are currently doing so can give you more personal feedback. I have a colleague who had a SCT for MF several years ago. He is doing great. He is an avid biker and rides all the time. His life returned to normal after a successful transplant.
For what it is worth, I would go forward with the SCT if I was in your situation. It is very scary though. I faced a very scary brain surgery a few years ago. My support system was critical during this process. Thank goodness for family and friends. The one thing i can suggest is to know that you are not alone. Reach out and get the support you need.
My favorite saying about dealing with fear is something of a mantra i like to use.
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Herbert, Dune.
All the best to you as you move forward.
Good morning, thank you for your reply and positivity., especially for your mantra.I am scared and worried and do realise that it is the best way forward, but I get the feeling that I am being herded to go ahead without the full picture from the consultant. For example, I tried asking yesterday about my lung, heart, liver, kidney and thyroid results etc without any success, because the consultant seemed very short of time.
I also realise that the NHS team here in the uk think this is the best way forward based on my blast cells.
Thank you again for sharing some of your story and also advice.
Many thanks
George
When you are discussing a SCT there should never be any rushing the conversation. This is far too serious of a step to rush the conversation. You need and deserve answers to all of your questions. I have no experience working with a transplant team. Others on the forum have discussed their experience with the process. As they have described it, making sure you are fully informed is a part of the process. Perhaps others who have expertise having gone through the process can speak to their experience.
Regarding all of your other lab results, you have an absolute right to have them at your request. My docs always give me copies if I ask. I rarely ask since I can access them myself on the patient portal. I believe there is information on the NHS portal available on this link. nhs.uk/using-the-nhs/about-....
Access to your own record is a fundamental patient right. Reviewing the labs also allows you to ask targeted questions and improves the quality of care. Given the direction your treatment is headed, this will be more important than ever.
All the best to you moving forward.
Hi Hunter, thank you again for all your advice and information. Sometimes its difficult to see the wood for the trees when you are under pressure and stress. I am making a note of people's comments and will formulate them into questions.
Kind regards
George
Hunter, Why is there fear having this Transfusion?
This is not just a transfusion. It is an organ transplant. The organ in this case is the bone marrow. The patient's bone marrow must be eradicated by intense chemotherapy. Then a donor must be found to match the patient. Matches are not perfect. Graft Versus Host Disease is one of the risks. While this is the one treatment that is potentially curative, it is a very difficult procedure to endure. I believe the current 10-year survival rate is about 74%. That is why there is such understandable fear.
here is some information about SCT.
mpnresearchfoundation.org/B...
ajmc.com/view/study-finds-7...
massivebio.com/stem-cell-tr....
Thank you Hunter, I didnt know Chemo was involved.
This might interest you, I studied Harvard, latest Scientific News, Alternative medicine eating 3 Kiwis per day, removed Bone Marrow Stem Cells for Cancer.
Hi. I’m now 8 1/2 months post transplant and I’m doing well. I was more or less in the same position as you when I had my transplant and it hasn’t been easy, but considering the alternative, I had no hesitation in agreeing to the procedure. I guess it is all about your state of mind and desire for life
Some are lucky and get their life back to ‘normal’ pretty quickly whilst others may be less well or take longer to recover, everyone is different and no one can give guarantees. At the end of the day, ask yourself ‘ do I want to fight this and grab a chance of longer term survival?’
Given the medical progress in carrying out SCT, survival rates are improving continuously. The medics have to explain all the risks and pitfalls for any procedure and that may make it seem very daunting.
In my personal experience, in spring 2022, I was fading fast and my life was becoming very restrictive with low energy and decreasing wellbeing. From being easily able to do a 15 mile hike or 50 mile bike ride 3-4 years ago, I could barely manage a few metres. I’m still not back to the 15 mile hike but I’m improving every day. I would snap up the chance of an SCT in a heartbeat if I were in your position but I guess you need to make that decision, and as I said earlier, what do you have to lose?
Good luck with whatever you decide, but keep us all posted
Garry
ps, I am happy to chat further if you want to private message me on here
Hi Garry, thank you for such a positive response. I understand that hospitals have to give you as much negative information as they can, but obviously that makes it much harder to absorb what you are about to go through.
I am really pleased that you are doing well post sct.
I too walk a lot and and mountain bike a lot and hopefully after my sct will be able to do the same again.
It would be great to chat more, but I'm not sure how to message privately?
Many thanks
George
Hi George. I can’t find anything in these comments about who is encouraging you to get a SCT. Is it an MPN specialist? If not I encourage not to give any more consideration to SCT until you meet with, are evaluated by & advised by an MPN specialist. Dr Claire Harrison at Guys is a top specialist & helps many on here decide what’s best. It doesn’t sound like your doctor is spending enough time with you. This is a very difficult decision & I’ve not heard of any patient having to make it without a lot more time with medical teams discussing all the pros & cons as well as detailed information about it. Since you’re in the UK, I encourage you to get a consultation with Dr Harrison. You have time to be fully informed & comfortable with a medical team helping you with the decision. Please keep us informed of what happens. MAZ can tell you how to request a consultation if you need help. Take care. Katie
Good morning Katie and thank you for your reply. I am in the uk and after much persistence managed to get my haematologist to refer me to Claire Harrison. However, I am not speaking to her until the 6th of March. The NHS team here have definitely not given me enough advice as yet, especially about my organ fitness to go ahead with the sct and the overall procedure.
However, since seeing the haematologist yesterday, I have written a letter to the team, which I am going to hand deliver this morning explaining my thoughts.
Many thanks for your advice,
George
I’m so glad you’ll be seeing her & her team. From everyone on here who meets with her about SCT they’re given a lot of time & quality information. They’ve all been able to make a decision about SCT with confidence it’s the right decision for them. If you don’t get a SCT you should see if you can have a MPN Specialist to consult on your case every 6-12 months. I do that here in the USA every 6 months. If your disease progresses you want an expert to recognize it & modify treatment accordingly. Try to just put all this SCT stuff out of your thoughts until you’re dealing with the experts. Everyone’s situation is unique & what applies to one patient on here may be totally wrong for you. Best of everything to you. Katie
Hi George , Have they tried you on medication ?
My husband was told he would need a stem cell transplant by his hemotologist.
He was referred to the stem cell transplant team they agreed he wasn't ready for a transplant and they have put him on ruxolitnib and he's doing absolutely brilliant. All his bloods are in normal range now and his spleen has reduced down in size.
They have done all the blood tests and found 9 unrelated donors on the register so if he ever declines or needs a transplant all the relevant tests have been done.
Hopefully professor Harrison will have more details for you.
This forum is excellent as you get so much useful advice .
Good luck George .
Good morning George.
My advice to you is speak to Garry and others who have experience of SCT. There are quite a few forum members who have been through this, and I am sure they will come forward. Knowledge is power and will help you to be your own best advocate.
With regards to your local health care team, I think you’ve done the right thing in writing to them of your concerns. Keep copies of all correspondence.
I’m absolutely delighted to hear you have an appointment with Claire Harrison. Be assured you are in good hands. At this point you could transfer to Guys completely or if you have confidence in your local team receive ‘shared care’.
The forum members will support you
Good morning and thank you for your reply.All the replies I have had so far including yours have offered really good advice.
Knowledge is definitely power and that is one of the things that seems to be lacking with my local haematology team, they are are giving me the minimum at the moment which doesn't really work for my mentality.
Many thanks
George
hi no advise from me but I’m sending huge hugs for you. This is an enormous stage in your life. Xxxxxx
On Sunday it will be 12 years ago that I started my chemo as part of the SCT process. It was my 58th birthday. My initial MF prognosis was 8 months but then stretched to five years. (Ruxolitinib had not finished testing) However, i didn’t like the speed at which Myelofibrosis had moved,so chose to go the SCT route.
It is a difficult ride but manageable as several here who have done it, will surely chip in. If your prognosis is correct, and the brilliant Prof Clare Harrison is the correct next helpful stage in finding out, then to me it is a no-brainer. 18 months versus potential for a much longer life?
Yes there are risks as it doesn’t work for all. Also, not everyone is suitable. You would need to talk to the SCT team to find out if it is even a possibility. They need to find a stem cell match and confirm that your body is fit enough (organ wise) to go though it. Not all can.
I have put a link below to my transplant story written a few months out from transplant all those years ago which will give you some more background.
I now run, ski, travel and do whatever I want to do. I also do buddy work for SCTers to answer questions and compare notes. Happy to help with any questions as are so many here.
It is a difficult decision but be guided by the excellent NHS doctors who do a lot of SCTs every year. Good luck with your decision making
Chris H
Good luck with the stem cell transplant.....it sounds as if you need it as it's your only option.Hopefully soon you get that consultation with Professor Claire Harrison to confirm it's your only treatment. Wishing you all the best Lynn
Although i have no personal experience of this, i just wish to add that i wish you well and that you will be in the best hands with Professor Harrison and her team. I am sure when you have your appointment she will clarify all you need to know to make the right decisions to move forward with this. I pray all goes well for you with your meeting with her and the next steps you need to take. I hope you will have someone with you who can be a second pair of ears and make notes as that's very useful. I am now 74 with ETJAK2 and sadly lost my father when i was 44 with something very similar to what you are experiencing as much of this technology was unfortunately unavailable then.
I had an SCT last September. The experience itself was horrible over several weeks in hospital and the ongoing effects of the chemotherapy were very debilitating. BUT I have no regrets about doing it. My JAK2 mutation is no longer detectable and my blood cell production is 99 - 100% donor. I am still severely immunosuppressed and have to be checked every two weeks. It is a very risky procedure but when compared to the alternative it was definitely my preferred choice. When you are referred to the transplant team they do all the tests to assess your fitness and even then, you are free to pull out if you choose.
In your position, I would go ahead and have a detailed consultation with the transplant consultant. Hearing about the risks is sobering but what I learned is that the mortality risk is largely dependent on any existing co-morbidities, rather than just random bad luck.
I wish you the very best of luck whatever you decide, Jennie
Good morning, thank you for your reply. I understand the risks but your reply is very positive and and is motivating me towards the stem cell transplantation.
Can I ask how old you were when you had your sct, I'm 66.
Many thanks
George
I was 60, almost 61. In fact I was still in hospital on my birthday.
Hi Jennie, Ahhh so we are similar ages. Was your donor familial, or just random?
George
My donor was unrelated, a young woman from Germany. We have exchanged letters but are not yet allowed to know each other's identity.
Hi Jennie, that's positive and promising in relation to a donor for myself as I have no suitable family donors.
Thank you
George
My sister was 34 and now she is 76.
36 years ago my adult sister had a bone marrow transplant and today she is 76 yrs old. Worked for her.
Wow, that's fantastic and inspiring. George
Hi Georgehb, I had a BMB last year. I was scared to do this, but it turned out not to be so bad. The doctor that did the BMB was very patient and explained everything he was doing and going to do. It didn't last long. There is a little sting where they numbed the area where they did the biopsy. Main thing is don't be scared like I was.
My friend aged 59 had one last year in Birmingham QE for smouldering multiple myeloma. It was tough going at the time but she was very well looked after. She recovered well , but had to have all her childhood jabs as she had no immunity. She caught shingles soon after, which is apparently very common. Now a few months later she's living a normal life, back at work, riding, skiing , walking etc. Pretty amazing considering she had breast cancer as well. If your Dr.s are recommending it then they must think it's the best treatment for you. Sometimes you just have to put your trust in the hands of the experts.
Hi George, I received the donor stem cells 14th June 2019. I was at the limit of being an acceptable risk and it was only upon my firm request for the SCT to be done that the consultant agreed. For me at the time it seemed to be a Hobson's choice. I had a few rough months post transplant, but in January 2020 I turned the corner and have now had my life back for the past nearly 3 years. You will I'm sure be given all the information you need to help you with this. If you are able to choose and are considered well enough to go through what is an arduous procedure, and the advice is that an SCT is realistically the only possible 'cure', then speaking from my own experience I would not hesitate. Wishing you all the best going forward along which ever path you take.
Hi, thank you for getting in touch and sharing your experience with me.That's really inspiring, thank you. I will take my consultants advice once I get all the relevant information.
Regards
George
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