Myeloproliferative neoplasm Anyone else have a similar diagnoses?

Posted by create @create, Oct 15, 2022

Bone marrow consistent with a myeloproliferative neoplasm and the differential includes essential thrombocythemia and primary myelofibrosis. MPL mutation testing is positive. No sustainable iron in bone marrow. 5 blood transfusions so far but hemoglobin hovers at 8 or below.

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Colleen Young, Connect Director | @colleenyoung | Oct 15, 2022

Welcome @create. I'm tagging a few members who may be familiar with your unique combination of diagnoses, like @sunnyside17 @jak2mpnpositive @claire39 @nohrt4me @nohrt4me @granniet @stimme @scottmatteo

Here are a couple of related discussions:
- I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/
- Myelofibrosis* https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/

Create, I look forard to getting to know more about you. It sounds like treatment has not yet been successful. What is being suggested as the next step with your doctor(s)? Are you in the care of a hematologist?

nohrt4me | @nohrt4me | Oct 15, 2022

Oh, geez, I am sorry to hear about the transfusions and low hemoglobin.

I don't know very much about the MPL mutation other than that it is the most uncommon one for MPN patients. (I have ET and the CALR mutation.)

If you are seeing a hematologist who specializes in MPNs or can get a referral for one, that sometimes helps move things along quicker. I have talked to a few other MPN patients who said that the specialist evaluated them and helped guide treatment through the local hematologist.

I hope you see some improvement soon!

create | @create | Oct 18, 2022

In reply to @colleenyoung "Welcome @create. I'm tagging a few members who may be familiar with your unique combination of..." + (show)

Currently receiving iron infusions once a week and blood transfusions when hemoglobin drops below 8.0. Stem cell transplant has been discussed but my age is negative factor.
I had a pill cam and enteroscopy with cauterization of two non bleeding but inflamed AVMs in jejunum.
Waiting to see if that could be cause of iron deficency. Another iron infusion this week. So far the 5 units of blood and 7 iron infusions have not moved my numberd.

gmacookie | @gmacookie | Oct 19, 2022

I am having both an endoscopy and a colonoscopy to look for bleeding because my iron keeps dropping to fast. They are trying the figure out why.
I have essential hemmoragic thrombocythemia and also stage 3 melanoma. I am on hydroxyurea since 2014 for the EHT and Opdivo for the melanoma. I guess we will see what they find next...good luck to you. I hope your numbers improve.

create | @create | Oct 19, 2022

I too hope they improve. Not sure how treatments will proceed beyond the transfusions and infusions.
This is all new to me. Thank you for your response.

create | @create | Oct 22, 2022

In reply to @gmacookie "I am having both an endoscopy and a colonoscopy to look for bleeding because my iron..." + (show)

Good luck to you too. They ended up doing a pill cam and then enteroscopy to locate source of my bleeding. Inflammed AVMs in small intestine. They cauterized them almost 2 weeks ago. They drew blood Thursday and my hemoglobin came up from 8.5 to 10.4. Coincidence or some other phenomena.

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