New to the forum
I would like to introduce myself and my present condition in the hope to communicate with others in the same situation.
I was diagnosed with myelofibrosis October 2021 and was prescribed Jacavi (Ruxolitinib), Aranesp and other meds to combat any side effects. The result for this was very positive for my situation, then a week ago I had a meeting and told if I was to stay on meds expect an approximate 2 / 5 years (any extra described as a bonus). The only real course of action would be stem cell transplant, for which they have 2 very good matches. My fear and concerns are the process, risks and % of success.
I have approximately 4/5 weeks to make a decision to proceed if the donors once contacted are still willing, has anyone else been through or faced the process who could talk about their experience and choices.
Thankyou for accepting my application to join/register to the group
Tim
Comments
Hi Tim, welcome to the forum. I'm Steve and I'm one of the online community champions here. I'm a stem cell transplant patient myself and had a transplant in 2013 from an unrelated donor for acute lymphoblastic leukaemia.
For me I wasn't given a choice regarding whether I should have a transplant. I was at a high risk of my leukaemia returning after they'd got me into remission and a transplant reduced the risk of relapse. So a transplant was always the intended course of action right from the outset. My sister was tested but did not prove to be a match. Thankfully through Anthony Nolan, a match was found on the register within the first couple of months of my treatment and things marched on towards the transplant, which took place after just over 3 months of treatment.
Nobody here will tell you that it's an easy process to go through, we'd be lying if we said it was. It is physically and mentally draining and it does take a long time to recover. Your medical team are probably the ones best placed to discuss the risks that relate to you and your current condition, and the likely outcome in terms of success and what sort of quality of life that will give you.
It's encouraging that they have two very good matches. In recent years, probably even since my transplant almost 10 years ago, the typing and matching of donors has improved from what I hear, such that the match between donor and recipient is closer. This reduces the risk of things like GvHD (Graft versus Host Disease) and other complications, but won't eliminate them completely.
You and your medical team must weigh up the risks against the outcome, which should hopefully be a good quality of a longer life. When that is the possible outcome it's got to be a big attraction I would think.
How are you feeling at the moment and do you feel fit enough to take it on? Have you got good support around you to help you get through? When the time came for me to have my transplant I didn't feel well at all. I'd had three months of progressively harder chemotheraphy and was so weak and tired I was ready to say I didn't want to proceed. In the end I did go ahead (Idon't think I could have stopped it anyway) and though it was a longer, slower recovery process than I expected, I made it through and can now live an almost normal life much the same as I was before I got ill. Apart from a bit of chemo fog and getting tired a bit more easily, it's almost as if it never happened.
I hope this helps a little. We are all different so your experience may end up being different to mine and others on the forum, but we will all go through thr process and encounter events that others have experienced along the way. That is what this forum is all about, as it enables people to see that even though we are all different, we are not alone. Whatever happens to you during your transplant will have already happened to somebody else on here, and knowing that you are not alone is often very helpful. Sharing our experiences helps others understand what is happening to them, how long it might go on for, and hopefully how they will feel afterwards.
I hope others will share their experiences, particularly those with myelofibrosis, who might be able to give you an insight into the process and benefits they saw during and after transplant.
Please do stick around, let us know how you're getting on and ask as many questions as you like. We're here to help and have the very knowledgable support of the Anthony Nolan team behind us.
All the best,
Steve
Hello Tim, I also have/had Myelofibrosis and have had the transplant very recently. I received my donor cells on 1st September and have now been back at home for five days.
I can't pretend it's an easy process - actually the hardest thing I have ever done. I'm still struggling with my appetite and with nausea and vomiting.
Before I made the decision to go ahead, I weighed up the risks but in the end I felt that I needed to at least try to extend my life because the risk of not having it was unthinkable. I also felt brilliant on Ruxolitinib.
I wish you the very best,
Jennie
Hi Tim,
I'm struggling 18months after transplant with gvhd... my body is fighting my stem cell transplant, but even for all this struggling that I'm doing, I'm alive! And that's indescribably good.
Your post has helped me put things into scale, relation. I'm even having a bad day but I'm alive!
I wasn't given a choice either and am glad. I would have gone for the transplant anyway.
Hope this helps, the decision is entirely yours,
Best wishes to all,
Helen