ET progression

I never heard that. Thanks for sharing.

@eloise999 Very welcome! I'd be interested if others have docs with the same info about progression. Usually docs focus on clot prevention, and progression is ignored.

There is sometimes so much apprehension and fear mongering around HU in the group that I start wondering if I am a dupe for taking it. So my doc's info was helpful.

@nohrt4me my doctor has not said anything to me about progression, although I saw in his written notes that he thinks I will have slow progression. Of course, since he did not tell me that, I don’t know why he believes so. I am on HU too. It has lowered my platelets and did it quickly. However, I know what you mean about the negative comments about HU. Unfortunately, all our options have serious side effects. However, HU usually works well and is tolerated, and it is inexpensive and readily obtained. I hope I can stay on it for a long time.

Well, if true, that's great. My hematologist has mentioned the possibility of progression, but I don't recall if he told me Hydroxyurea prevents it or lessens the liklihood of it. Hope so.

@eloise999 Progression to MF or leukemia seems to be fairly infrequent, so most docs don't want to put it on the table front and center. I only pressed my doc about my chances for progression because of the pending open heart surgery. ET onset was 18 years ago for me, and it used to be a rule of thumb that people began to have more problems after 20 years. But I think that with better monitoring and treatment that has changed. Hopefully that's the case!

@nohrt4me As we have learned, MPNs can affect us all differently. After my ET diagnosis at 50, it was 18 years later before I was diagnosed with Secondary ET Myelofibrosis after my routine 6 month CBC showed my hemoglobin level at 6.4. When I got a second opinion at MD Anderson, my doctor there told me that my conversion was not surprising given the length of time I had ET. I ultimately had an allogeneic SCT at age 69 in October 2024.

Before my SCT and probably 30 transfusions to manage my anemia, I took the blood test results I had accumulated and prepared a spreadsheet of results in chronological order. While my platelets were kept in the normal range during my ET journey with anagrelide and then Jakafi, I noticed from my spreadsheet that during the last 7 years before my SETMF diagnosis, my hemoglobin levels had been in steady decline. Because my platelets were under control, I rarely saw my hem/onc, instead seeing his NP. I was never alerted to the decline in Hgb during my 6 month checkups. I am not sure it would have changed my treatment, as I was already on Jakafi. Maybe it was just a watch and wait situation.

Was my steady decline in Hgb an indicator of my ultimate conversion - I don’t really know. My then hem/onc left the practice right before my SETMF diagnosis. I had not had a bone marrow diagnosis during that 7 year period of decline, which would maybe have been the real indicator.

All of that said, you might want to track your HGb levels for any noticeable decline. And, maybe more frequent BMBs.

Good luck to you!

Hi @mikecaldwell ,
You make very good points about hemoglobin level being important. Mine have stayed constant at 12.7 plus or minus .1 unit since I was diagnosed with a MPN in January 2025 because of high platelets.
I was told by one oncologist/hematologist and as well as a bone marrow transplant specialist that Hydrea or any other medication for MPN have the side effect of lowering all blood cell types and do not halt progression. That is probably why I have declined taking any of them. I am sure if I would have been told they differently I would have been and would be more open to the possibility of taking one at some point. It is so interesting that we all are told different things or not told at all by our doctors. Maybe that just shows that much about MPNs is still needed to be learned.
Thanks for your thoughts and have a great day!

I found out about my ET when I had yearly bloodwork 2 years in a row platelets were higher than normal no symptoms so my Doctor sent me to oncology. The highest mine ever got was 650. I started on Hydrea 14 months ago very few symptoms previously taking 500mg 7 days a week. Now on 500 mg 3 days a week. Numbers are 295 at last weeks check. I read earlier that a 60 year old person that gets ET has a 30 year survival rate I am 72 . My Doctor is one of those that tells you that this is not cancer. Guess it depends who you talk to. I now have Afib so I take blood thinner Eliquis so no asprin but the Doctor said this is a good thing because it helps with blood clots who knows. Have a great day.

The day I was diagnosed, my Mayo-trained oncologist said that HU was essential if my bone marrow was to continue functioning.

Bone marrow that's lost the ability to produce healthy blood cells is leukemia.

Every day, ET challenges my blood marrow. Every day, I fight back with HU.

@1pearl Yes, more info on MPNs needed. I do want to clarify that HU does not halt progression. I don't think anything does that except STC and maybe interferons, but the jury's out on that.

What HU *does* do if started before platelet production gets too high is prevent bone marrow from "overwork," thus reducing chances for mutations that cause progression.

Not trying to talk you into taking HU. Just offering info and support to those who do.