Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?
Dear Cindy2,
A bone marrow biopsy is a standard for diagnosing essential thrombocythemia and primary myelofibrosis, and even for polycythemia vera
A responsible hematologist will never put a… read more
Currently I am being treated with low dose Aspirin. Other than that, there is no medication at all. If anyone has the same condition as me and is being treated, please give me more information. Thank you very much
Hello BichDiem
I'm glad you're here and getting good information from Steve and others on this site. I'm also glad to here that you have an appointment this month to learn more from an expert
To… read more
I have secondary Myelofibrosis. I take Jakafi 10 and Anagrelide.05
Twice a day. My numbers are good.
This definition is from the Cleveland Clinic:
There are two types of myelofibrosis:
Primary myelofibrosis is myelofibrosis that occurs on its own.
Secondary myelofibrosis arises secondary to other… read more
I was diagnosed with MPN/ET after being initially diagnosed with Polycythemia Vera with a JAK2 Gene mutation in May 2022
This was left 'undiagnosed' for +/- 10 years
I have blood lab results dating back to January of 2013 when my Platelet counts were:
01/2013 - 701
04/2014 - 620
02/2015 - 588
03/2017 - 716
01/2018 - 725
02/2019 - 744
08/2020 - 796
05/2021 - 833
04/2022 - 783 (this is when it was finally brought into question by my VA doctor)
My questions are;
Does anyone know of any findings… read more
As long as we are proactive
So when you had your bone marrow biopsy did you read your report and if so did your diagnosis read like the part I circled red. The reason I ask is because one of my doctors said it’s a standard statement.
I don't have my full report, but it says "consistent with an MPN, most likely ET". "Normal to slightly hypercellullar BM, megakaryocytes with atypia, in clusters. Mild fibrosis MF1". At the time of my… read more
I found out I have hypothyroidism, I had a hysterectomy in November. It is not as bad as last year, but continues to happen. Was hoping someone can provide some guideance.
Regarding thyroid: I've been treated for Hashimoto's thyroiditis for 40 years. 100 mcg of Synthroid has kept my thyroid level normal, ever since the correct dosage was found. Also: Does… read more
I Started hydroxyurea in May. A few days in the last few months, I felt my mouth burn… rinsing with baking soda helped and it went away… now 3 months later, my mouth and tongue are quite sore and I need to vaseline my lips frequently…am worried about getting cankers!…the baking soda rinse is barely containing the soreness. Eating Yogourt and soothing food helps, but only temporarily….any treatment ideas?
The doctor can give you a prescription mouthwash
Thank you, Tatiana!
You are so knowledgeable. I asked my specialist at a recent appointment Whether my percent of mutated alleles that are JAK2 positive Have any correlation to the severity of my… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more