MATEs FORUM

Sorry I haven't been around. I needed to take a break from thinking about my disease.

My MPN specialist recommended that it's time to do a transplant.

Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally healthy, I'm refractory to all current treatments, including the latest CALR antibody trial.

My disease is highly proliferative, and there's no way to stop or slow it down.

The best available donor is an unrelated 9/10 match.

Considering all the survival risk factors, the only one I can control to improve my chances of survival is to undergo the transplant sooner while I'm still healthy.

I don't really have a question. I know this is my only real chance of a cure and of seeing my kids grow up, being only 44. I'm just sad and, to be honest, scared.

I will try to keep everyone updated. Before commitment I asked my mpn specialist to survey the director, professors and top doctors in the transplant team. If the vote come back that now is the best time then I'm doing it.

As informed as I am, I will never have the formal education or the years of clinical experience that the doctors have. I have challenged and complained when I have been uncertain. I have found the gaps in the academic literature and clinical practice and experience. It's hard but I'm at the point where I have to trust them with my life.

Good evening Craig...

Yes, making decisions like these are tough and naturally weigh very heavily upon one's mind & emotions... Especially, when one also has a young family to consider...

And this is precisely why we are here at all!

Like you, I too found a great many gaps within the rationale and reasoning of science, when trying to make such a decision based on science alone. One of the great problems we have in Australia, is simply that these blood cancer cases are so rare, and Australia has a relatively small population... Making this a problem one of an "economy of scale" dilemma, Or put more simply, (...there's just not enough people with one of these acute illnesses to warrant spending vast sums in research, at the present time, (in my view...)

When I was first diagnosed (Dx – 2016). [Post ET / MF] (CALR+ Type2), w/ ASXL1+ & Von Willebrands Syndrome (Acquired Type2)

I also did not have a 10/10 TT when my siblings were tested, (50% from a sister only). Eventually, they would have found a 10/10 match through the Donor Bank search tho' I am fairly certain.

However, even at my age (then 58), I had to first learn to come to terms with being overwhelmed by it all... That can take some time to progress through too... It did with me.

During that time, (as luck would have it), I was completing a second BA at university. Hence, I turned my research & analytical skills to trying to better comprehend and understand my illness, and the various treatment options that might have been available to me, and then to try to weigh all of that information against my current "Quality of Life", weighed against the odds of a bad case of Graft Versus Host Disease (GVHD).

Unlike you, & because my starting equation in chronological years was already far more advanced than your own... This made making my decision that much harder...

However, I also knew with a fairly strong sense of confidence (80-90%), that nobody out there in the world of research and academia could really say with any great certainty what my outcome of rapid disease progression might prove to be, within the ensuing years (?) There are others like you & I, with very similar diagnosis, who are living near normal existence, with only diet & lifestyle changes required to manage their mostly chronic illnesses, (that seems to be my category too... thus far... Fingers crossed!).

Hence, I kept researching, both here and overseas. I spoke with a great many people (both here and overseas), both those either undergoing the process and/or one or two who had survived and were happy to share their information with me... Sadly, it did little to alter my previous position or findings, in that I have come to believe that nobody knows anything for certain, in my view... Some of those people have gone on with difficult lives, some repeated the procedures x2 or more times and still failed; some didn't survive at all, some initially survived but grew worse and passed later. There are very few who have had the miraculous fortune of a complete recovery, tho' there are a couple of them too...

Of course, there are those cases that are exceptions to the rule... Where doing the old "Wait & Watch" is really NOT an available option... Unfortunately, they are those patients who have found that if they do not act with haste that they too might soon become another unwanted statistic!

We have one such member in our group, his name is Warwick... I believe that you should have a frank discussion with Warwick about ALL things ASCT... I am certain that he will be only too happy to share with you the extent of his ongoing (POST) Myelofibrosis – Allogenic Stem Cell Transplant (ASCT), thus far... as Warwick is still finding ways to live with his illness 3+ years later, but is also the first to acknowledge that in all likelihood, w/out his ASCT procedure he most likely would not be here at all... Warwick also has a large family and shares many similarities with you in that respect too...

There are a great many considerations one needs to have contemplated before taking the ASCT adventure, and Warwick is perfectly placed to provide a wealth of information about such a journey, in my view... He is always happy to assist others who are contemplating such a decision. Warwick has discussed these options with many others like yourself over these past few years... Can't hurt to have a chinwag with hime Craig, might even help you a tad(?)

Warwick and I catchup for a real coffee at a cafe every so often, and you'd be welcome to join us of course...

Let me know if you wish to reach out to him okay?

He might even see this Post and chime in himself at some stage...

Here to help if I can Craig... Feel free to email/phone Or Private Message me, and I will organise to put you two in touch should you so desire etc...

Best wishes

Steve

Thanks for your detailed response. It is a comfort to see that your research has led you to a similar conclusion, but it has also added to my anxiety.

While "watch and wait" is a commonly used treatment plan, the reality is that this approach has significant risks.

I see the logic in your thinking, but is your current age the reason you decided against a transplant? What are you waiting for? Or have you decided just to live with MF to the end?

For me, the research and the doctors seem to agree that I will need a transplant to live more than 10 years. So, I know I will need a transplant at some point in my life. The next question is when.

If my goal is to survive and lower my chances of GVDH, then transplanting soon would meet that objective.

If I progress to intermediate-2, it decreases my chances of survival with a transplant and increases the chance of GVDH.

There is research suggesting that psychological issues can also increase the risk of graft failure and GVHD.

I don't know what I don't know, and that's always going to be the case with myelofibrosis uncertainties.

Hello Craig,
I am afraid I cannot be much help in answering your questions but wanted you to know that we shall all be supporting you whatever decision you make.

I have also progressed from ET to MF and sadly I am too old to have a transplant. When I had the results of my BMP, my consultant asked me if if would like to test how prolific my disease is. As I am now in my 80’s I decided I would rather just carry on until the end, without that knowledge.
Your case is very different and you have a hard decision to make but do have a word with Warwick if you can.

Please keep us posted on the forum as we need pioneering MPNers to keep us all informed. Rest assured, whatever decision you make we will be right behind you.


Best wishes,
Katie

Hi Katie,

Thanks for you response and continued support.

I'll be sure to keep the group updated.