Is my treatment a bit aggressive?

I have asked and was told to maintain this level… I always look at my test results and there are other tested items that are consistently way out of the norm… I have questioned this and am told that this is ok… I should mention that my oncologist reports directly to a MPN specialist… If I didn’t feel so good or had bad side effects from the HU, I would push this issue further… For now, I’ll defer to the experts…

Thanks for the info. I will be more diligent about my annual eye exam, as the retinal occluclusions associated with ET were off my radar. I see that ophthamlology journals do note this.

"Previous reports in the literature have discussed the presentation of essential thrombocythemia in association with ocular manifestations, most commonly presenting with central retinal vein occlusion, branch retinal vein occlusion, or central retinal artery occlusion."

From a 2021 article in the Canadian Jrnl of Ophthamlology
https://www.canadianjournalofophthalmology.ca/article/S0008-4182(21)00416-6/fulltext

Hi, had bmbtwo days ago went pretty smmoth,and blood work back; plts down 107k to 532k from 639 after 3 weeks on HU, also rbc, wbc, and hct down a bit to by 4%.

Will have more blood down in 24th formy follow up for bmb. Feeling much better overall, but some days are harder than others. Still have numbness/ tingling in feet.

Hi Tom! The blood numbers look encouraging with a nice decrease in the platelets. The bmbx will give a good overall picture of the health of your bone marrow…the heart of your blood production. So the results will be useful for your doctor going forward and making decisions for your continued treatment.
You might discuss the possibility of a lower dosage with them once your numbers reach an optimum level for maintenance. There are a number of members who have had reductions once their numbers were stable, to help minimize side effects. Have you talked about the numbness/tingling with your doctor? Do they feel it’s from the HU or the ET?

Actually think it's the ET, I have this going on for a few years, seems to be improving on aspirinand HU, as well as improvement with a few minor issues with dry skin and itching. But have minor itching after showers. Very encouraged by the response to HU

Hello,
You mention you have PV. I have an MPN specifically PV and on hydrox..which if able to tolerate it, it's the mainstay drug of choice. I started out with hydrox with phlebotomies twice to get my numbers down. They are down which I'm grateful for and haven't needed a phlebotomy for over a year which is good news, I'm within normal limits with hydrox and baby asa. If your numbers are good, without symptoms from hydrox, able to perform all the exercise you love with excellent energy levels consider yourself lucky. That's not to say your hydrox prescription is optimal, the best thing is to have a discussion with your hematologist regarding the dose and blood levels. You are the first person that has not complained about fatigue but instead your energy levels are excellent...I would give anything to say that's my situation. Good luck and partner up with your hematologist, ask relevant questions and expect relevant answers ..If you don't feel comfortable with the answers with appropriate rationale then it's time for a new hematologist.

Thanks, no PV, ET, I do have some fatigue. I consider myself fortunate. Just want to Keep it that way! Thanks for your advice

I have been taking 600mgs of HU(Droxia formulation) since PMF diagnosis in 2018. It has lowered my platelets to normal range, while my other counts remain normal. My LDH is elevated at 200 above normal, and my hematologist says it's just a result of PMF. I also think the HU helps to keep my spleen from enlarging. I'm 77 and JAK2+

I have been taking 600mgs of HU(Droxia formulation) since PMF diagnosis in 2018. It has lowered my platelets to normal range, while most of my other counts remain normal. My LDH(lactate dehydrogenase) is elevated at 200 above normal, and my hematologist says it's often associated with PMF; it has been elevated since I was tested at diagnosis and subsequently. I also think the HU helps to keep my spleen from enlarging. I'm 77 and JAK2+. I had a NGS test 3 yrs ago for 203 mutations associated with blood disorders, and I was positive for ASXL1, TET2, and RUNX1. The significance of those mutations for me remains uncertain, although they are often associated with worse overall survival(OS), and with progression to acute myelocytic leukemia. I have not had significant side effects from the Droxia, and my PMF symptoms have been mild itching, and moderate fatigue. I exercise daily, and eat a noninflammatory diet. I also take 81mg of aspirin daily and 5 mgs of Eliquis twice/day.