Hi i am Graham 64 with an Acute myeloid leukaemia (AML) diagnosis last Nov and on my 2nd round chemo with Vixeos. It seems to be going well but i am unsure about Stem cell transplant given the risks. My consultant recommends this course but I am not sure. What would people recommend. Is there a choice?
4 Likes
Hi @Grahamp Welcome to the forum.
I had a Myelofibrosis diagnosis in October 2023. A donor that was a 9 out 10 match was found. Unfortunately my condition progressed to Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) so transplant was off the table early 2024.
I had heavy duty Flagida that they hoped would get me to a point where transplant was possible. Sadly it didn’t move the dial.
I was then put on maintenance chemotherapy Azacitidine and Venetoclax.
I was called back to the Transplant outpatient clinic late 2024. Both my wife and I were sure they were going to explain the reasons why they couldn’t go ahead with transplant.
Having spoken to the Lead Consultant and explained what I was doing exercise wise and coping with treatment he said I’d like to recommend you for transplant.
I then had 3 and a half months where I had to keep myself healthy.
Fortunately I did, was admitted late March and had my transplant April 2025.
They talked me through all the risks in the gloom and doom chat I had in early 2024.
When called back in December 2024 the Consultant set out the percentages in terms of not surviving the transplant, chances of it not working and chances of success. Really important piece of information.
The Transplant was as tough as I expected plus a bit more. It was described to me as the toughest non surgical treatment you could have.
A game changer for me came from my nephew. I told him the percentage chance of success. His reply was as what’s the percentage chance if you don’t try.
When you are in the hospital they take really good care of you.
When I got home the recovery period was very challenging. I could barely walk any distance.
Slowly but surely I got better. 10 months on from transplant Consultant team happy with progress at this stage.
There are risks for sure and my advice would be to ask lots of questions.
Worth knowing that they wouldn’t suggest transplant if they didn’t think you were fit and healthy enough.
I was 60 when I had my transplant so just a few years younger than you.
As well as being fit and healthy your mindset makes a huge difference.
I was determined to give it my best shot as I knew having an anonymous donor and the chance to have a transplant was a huge gift.
Hopefully my reply is helpful and remember every person with blood cancer is different.
7 Likes
Thanks Duncan B this is very helpful
Thanks for sharing your experience this is just what i need.
7 Likes
No problem @Grahamp
Glad it was helpful
2 Likes
Hello there @Grahamp, welcome to the forum. I’m really sorry to read of your diagnosis with Acute myeloid leukaemia (AML) and concerns about potential treatment.
While I don’t live with Acute myeloid leukaemia (AML), I was diagnosed with Polycythaemia vera (PV) which you might know is related and can progress to Acute myeloid leukaemia (AML) so I try to learn what I can. Thank you for sharing here, it’s really helpful.
Perhaps you might find some new information in the great Blood Cancer UK information about Acute myeloid leukaemia (AML): Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
I see @DuncanB has offered invaluable personal experience of his stem cell transplant. If you look for “stem cell transplant” in the search box above or Related Topics below you’ll find other research and forum member experiences that might also be helpful. I know of some lovely forum members who live with Acute myeloid leukaemia (AML) and its treatments so I’m sure you’re not alone with your considerations.
You can find specific medical advice from the specialist BCUK nurses, whom I can’t speak more highly of. You can speak to them free and confidentially on 0808 2080 888 and email at support@bloodcancer.org.uk and you’ll also see them sharing their wisdom around the forum.
Hope that helps a little @Grahamp, please don’t hesitate to keep in contact and let us know how you get on.
3 Likes
Thanks veey much Duncan very helpul indeed i will take up your suggestions. I presume the people living with Acute myeloid leukaemia (AML) means just controlling the disease but not elimiating it which is what i understand Stem cell transplant does, is that right?
2 Likes
You’re most welcome @Grahamp, share and share alike I say. I am really sorry you’re dealing with Acute myeloid leukaemia (AML), from my understanding it can present in many ways that are as unique as each of us around the forum and I am certainly not an expert.
I can say though that the Polycythaemia vera (PV) I live with is considered a chronic and incurable type of blood cancer so those of us diagnosed with it (and closely related Essential thrombocythemia (ET)) tend to have to get our heads around being stuck with them and ongoing treatments for life. Acute myeloid leukaemia (AML) being acute would likely need more immediate treatment, from my non-medical understanding, hence the sense of urgency you may be picking up on from your specialists.
May I ask what your hesitations about the stem cell transplant may be? Perhaps working backward from those can help make a decision. Can you talk it over with a loved one? I would always defer to your specialist, but I would want to speak to 2 or more experts to gauge their range of responses. I really would recommend speaking with the @BloodCancerUK_Nurses who know their stuff. They can also direct you to other more pertinent sources of information.
As for members living with Acute myeloid leukaemia (AML) and indeed other acute types of blood cancer, I wouldn’t like to speak for them, but I know of one young Acute myeloid leukaemia (AML) survivor who went through a stem cell transplant and worked their way back to full health and even finished their degree and I believe they’re considered to be in remission and disease-free now.
Like @DuncanB says, a transplant wouldn’t be offered if your outcome isn’t thought to be optimistic by specialists. This sounds positive to me! If you feel healthy and fit then perhaps talk this through with experts to get a sense of how your body and mind could manage a transplant.
Keep us posted about what you decide @Grahamp, and do consider reaching out to others around the forum.
3 Likes
Hi duncan the consent form i received from NHS is enough to frighten anyone off tbh.
Its littered with words like destroy, severe, fatal, damage, long term side effects, lethal etc
Most worrying is the Graft-versus-host-disease which can itsays cause ling term problems lasting many years. Do i really want that?
Your thoughs are greatly appreciated
Thanks
1 Like
Oh my yes the language used can be terrible! I once read the instructions that come with the hydroxyurea I take daily, which is considered a mild chemotherapy, and there’s lots of the worst-case and yet incredibly rare scenarios. Haven’t read them again.
Are the risks from treatment less than the risks from the disease? What are the risks, like the Graft-versus-host-disease and medicine side effects? How could treatment impact you in the short-term and long-term? I found it helps to keep note of all my queries so I can ask my specialists when I see them.
I also ask them to use plain language and no metaphors as some doctors can get a bit flowery and/or medicalised. You’ll know what you want to ask so I’d say keep note of it all @Grahamp.
2 Likes
Hi @Grahamp
Yes the consent form is scary when you read it for the first time.
However, the Consultants need to give you the full picture of potential issues with the transplant.
The word potential is important as many people get through the transplant without issues.
Graft versus host again sounds scary and it’s worth noting that they have got much better at managing it should it occur. I had some chemotherapy drugs a couple of days after transplant which clinical team told me had resulted in reduced graft versus host instances.
Graft versus host disease can arise at any point but I was told that the first 100 post transplant is the most risky.
During that first 100 days you are monitored really closely and told what to look out for as it can show up in many different ways.
As @Duncan mentions you definitely worth talking through with the experts to really understand what it means in your circumstances.
Hope that helps and do keep asking questions and keep us updated.
3 Likes
Hi duncan. Sound advice. I will talk it though with the professionals. I have time becuase i am pencilled for end April. .eanhile i will use this form and the links to other chats. Everyone is very helpul.
3 Likes
Glad it’s helpful @Grahamp
Good you have time to look at all information and get answers to all your questions.
For a bit of context I read somewhere when transplant first mentioned that there were only about 4,000 allogenic(transplants where you receive donors bone marrow) each year.
Whilst it’s a tough thing to go through it’s also very expensive(I’ve worked in Finance in NHS during my accounting career) so checked out costs and even I was surprised.
Of course and rightly so Consultants won’t focus on this and be looking at risks and benefits for you.
2 Likes