What are pros of hydroxyurea vs other methods of lowering platelets?

Hi cdurbin,
Thanks for posting. I guess I just really would like to have it determined what I have exactly before taking med. other than aspirin. That would be much easier for me to take the med. how fantastic you are just taking aspirin now at 48 years old. I turned 65 with no previous issues and feel I have no really confirmed diagnosis other than night platelets. I have no JAK2 mutation on lab.the others were not tested. I just need to have more information about what I have exactly before I feel comfortable taking Hydrea. Aspirin I would not have any problem taking.

Sorry about my many typos! I will proof read better next time!

Mine did the same except I'm low risk because I'm 48 & never had any issues. I do have family members that had leukemia so they checked a bunch of genes for any type of mutation.

Hi debhammel,
Thank you for posting. Yes, I really do want a bone marrow biopsy first to make sure I do not have something g else. It sounds like you have a good doctor. I sent questions to the oncologist/hemotologist I was referred to and my first question was why I was not getting a bone marrow biopsy to confirm my diagnosis. I am still waiting for a reply and so hope I get one from her. I also asked how many patients this group has treated locally here and how many she has treated herself. I just really need to know that in the event I am expected to just take Hydrea without really knowing I have that. Granted ET is the lesser of the evils to have, but I would just really like to know the answer. I am not sure if your age, but I assume similar to mine. If you do not mind sharing, did you have any gene mutation such as JAG2 as that is all I have been tested for and mine is negative.

Yes, I can sure understand wanting a firm diagnosis before taking meds, and you are right to push for more info.

A diagnosis of some other blood disorder *might* have been ruled out for you by a previous blood test, but the docs don't always explain that very well.

Like you, I was also JAK2 neg 10 years ago. At that time, the other genetic tests were not available (or insurance would not pay, I was never clear which was the case), so diagnosis was confirmed thru bone marrow biopsy. Easy test with minimal discomfort. It does take awhile for results to come back.

A bone marrow biopsy might not be needed if your doc tests for the CALR or MPL mutations. My doc ran those tests as soon as they became available. Again, several weeks' wait for results. But, voila, I did test positive for CALR mutation.

Lesson I learned is that it may take months to go thru each phase of the testing.

Hi nohrt4me,
Thank you for posting. Yes, I know much of the testing is very new. However no test for CALR or MPL was ordered for me, so I feel my diagnosis needs to be confirmed more definitively. The way I look at it, this condition was told to me to have been my disruption for five to ten years probably but no tests were ever done and I have no symptoms. I do not care to be pressured on my first meeting with oncologist/hematologist to just take the Hydrea right away, two times per day 500 mg. I just do not see the rush to do that.l since I am no different than I was before showing up to substitute primary doctor on 12/11/2024.
Thank you for listening.

Yes, I'm blessed with an amazing care team: a PCP who was astute enough to contact a hematologist/oncologist when she saw my elevated platelets in a blood test, and that same heme/onc who treats me like I'm part of his family (both are members of the University of Maryland St. Josephs Medical Center in Towson, Maryland, which has an amazing culture of medical providers talking to each other to assure their patients receive the care they need). I am 70, was 68 when diagnosed, and I do have the JAK2 mutation. I had no symptoms other than recurring migraines, which disappeared as soon as I started HU and my platelets began dropping.

@cdurbin I, too, have PV and was diagnosed 5 years ago. I take 2 baby aspirin/day and undergo periodic phlebotomies to keep my Hematocrit under 45. I have about 3-4 phlebotomies/year. I consult w/Dr Tefferi at the Mayo Clinic via video visits once/year. I tell you this because Dr. Tefferi, who is a Hematologist, has written many publications on the topic of PV. I am a low risk patient like you. He believes in targeting the hematocrit and not focusing on the platelet count. My platelets vary and can be as high as 700,000. He doesn’t care. I would suggest that you read some of his scientific articles and perhaps schedule a video call with him to discuss your case. He has never advised that I take HU. Here is one of his articles. I hope this helps. Good luck, Andrea
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002

I have a similar diagnosis, but I am high risk due to over age 60. I took baby aspirin for 30 years for sticky blood before getting the diagnosis of ET/Jak2. What is your platelet level? What is your allele burden from Jak 2? If platelets over a million and/or high allele burden, I would definitely start the HU. By the way, I take baby aspirin AM and PM, and HU 500 mg 4x week. My platelets were 800K in Jan 2023 and now about 550K. I have no other symptoms. My O/H is happy with my numbers, plus he looks at all the other blood work to determine that I am stable. He checks my spleen (palpitates) at each visit. I also take iron supplements for low iron but not anemic. Make sure you have blood studies for iron checked. I see my H/O every 2 to 3 months. I belong to several online groups that have monthly, free online seminars with MPN doctors. I highly recommend joining the (free) MPN Research Foundation and the MPN Advocacy and Education. The MPN specialists to follow: Dr. Reuben Mesa, Dr. Aaron Gerds, and Dr. Gabby Hobbs.

Wishing you the best. You can live a good life with this for a long time. I'm 71 and doing great!
Karla

Join these great organizations for free:
https://mpnresearchfoundation.org/
https://mpnadvocacy.com/

Hi mdterp76,
Thank you for posting. I do have high platelet but less than one million. I do not know what allele burden from JAK2 means, only that I do not have that mutation. Please teach me. That is great you have great O/H and they are fine with 550 platelets. Mine was wanting 400. I will look into joining the group you posted about.
Great you are doing great and a bit older than I. I hope to doing like you when my situation is more clear. Thanks for sharing.