← Return to Guidance re. stem cell transplant in 70s (MDS and CLL)

Discussion
Comment receiving replies
Profile picture for mgol @mgol

Thanks @dwolden for your comments, and I'm sorry to be slow in acknowledging them. A lot has happened the last few days.

My mum's had multiple appointments this week, and in one respect we're closer to the transplant but in another respect further way. And I think my mum is more undecided now than at the start of the week.

My mum had all the pre-transplant fitness checks on Monday. We're still waiting for the full results, but the suggestion today when we spoke with the doctors was that the preliminary results hadn't thrown up any issues. So we're assuming my mum will be considered ok to go ahead with the transplant.

But we also had two consultations today, one with my mum's primary haematologist, and one that we arranged privately with an MDS and bone marrow transplant specialist. And both seem to be more hesitant about the transplant than the doctors we've met at the transplant unit. We've always sensed that my mum's primary haematologist was unsure about my mum having the transplant, and made the referral to the transplant unit largely at our request. Today she suggested that the hospital were uncertain about the risk level of my mum's MDS. The MDS specialist wasn't opposed to a transplant as such, but clearly had reservations. She wants to see more results from the most recent bone marrow biopsy (we're still waiting for the myeloid panel), but seemed to imply that she wouldn't recommend a transplant based on the results of the prior bone marrow biopsy - done in May - and would only recommend it if the myeloid panel shows an "evolution" in the MDS. Her opinion was that my mum's MDS is likely low or intermediate risk, which wouldn't warrant a transplant at her age, though she also gave a likely life expectancy of 3-5 years in the absence of a transplant, which for us wasn't very encouraging.

So we are unsure where we are heading. I know my mum is in some sense lucky in being able to choose whether to have the transplant - for lots of people, there's no prospect of a good outcome any other way, whereas in my mum's case, it's possible the MDS won't progress to AML, and that the CLL will continue to be treatable, even in the absence of a transplant. In that sense, today's meetings were positive. But we also know the window of opportunity to have the transplant is probably very narrow considering her age, and if we make the wrong decision now, it's not something we'll necesarily be able to correct later.

My other worry is that my own googling leaves me worried that the risk of my mum's MDS is being understated, but I'm obviously not qualified to interpret most of what I'm reading. I've entered my mum's results into different MDS/AML risk calculators, as best as I can, but the results vary so wildly (from this: https://ibb.co/5dX6jHJ ; to this: https://ibb.co/6cPcM840) that I don't know how on earth we're meant to interpret things.

We're going to have a further meeting with the transplant team later this month. Hopefully we will have the myeloid panel back by then, and know a bit more. But as it stands, I think my mum is going to ask if the decision around the transplant can be deferred to a later date.

Jump to this post


Replies to "Thanks @dwolden for your comments, and I'm sorry to be slow in acknowledging them. A lot..."

@mgol transplant is not a step to take lightly, so your mum’s caution and your questions are so very valid.
I have learned not to consult Dr. Google as it has been terrifying on the regular. I do thoroughly read all the medical reports and ask questions endlessly.
You are correct, for many people there is little choice involved. We are fortunate to have top notch doctors who were very honest with us every step of the way. When we met with his local oncologist and received the MDS diagnosis, he told us David’s life expectancy (without transplant)at best would be 18 months. I remember the peculiar sensation at that moment, I believe I went into shock.
We passed that point in May of this year and I was able to trade some of that feeling of terror for a rush, every single day, of deep gratitude.
Every patient and every cancer is so unique. I wish you the best and your dear mum the very best as you face these decisions and move forward.