Is my treatment a bit aggressive?

Hi Tom, There are quite a few members in the Connect forum who have been diagnosed with a Myeloproliferative disorder such as ET, PV or Myelofibrosis brought about with the involvement of a mutation in the JAK2 gene.
While the diagnosis can be similar not one size fits all when it comes to a treatment plan. Each person has their own case history which can have a bearing on types of treatment, dosages, when to treat, duration and all of those factors. Some people may have a higher risk for developing clots than others. So it’s really not a good idea to compare your own treatment plan with anyone else.

Not sure if you’ve been to visit this particular discussion.
Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
Here are a few links to articles that I’ve found helpful to explain MPNs, diagnoses and treatments:
Verywellhealth.com
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
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https://www.verywellhealth.com/jak2-mutation-5217909
I also want to caution you that those of us in the forum aren’t able to diagnosis or offer treatments for an illness but we are able to use our experiences to help out when we can. I’m sure other members with ET will be popping in to share their experiences with hydroxyurea, which is the front runner in helping to control excess platelets for someone with ET. But it can also temporarily lower all your blood product numbers including white and red cells. Your doctor will check to your numbers frequently and adjust your dosage accordingly. Some members have been able to decrease their dosage after the initial higher treatment helps drop the numbers to a preferred level/.

From my understanding it isn’t always necessary to have a bone marrow biopsy to diagnose ET. Blood work can suffice to check for levels and any possible genetic mutations. However, with any myeloproliferative disorder, there is a change in the production of your blood. That all begins in the bone marrow which is the blood manufacturing center of the body. So it’s not overkill to have test done. Your doctor is being thorough as this test will show the health of your bone marrow and its ability to continue to produce healthy blood and will serve as a baseline for any future changes.

You may not experience any noticable physical changes at all but because HU may lower your white blood cells, you may be more susceptible to infections or illness. So, don’t stop being active and engaging in your vital daily activities but just be a little mindful to avoid people who are ill, no raw sushi/oysters, wash hands frequently etc..

One more discussion for you about timing of HU. https://connect.mayoclinic.org/discussion/contolling-hydroxyurea-fatigue-by-time-of-day-you-take-the-medication/

When are you due for your next labs?

Thanks for all the info, really appreciate it!
I am scheduled for a BMB on 6/11 i assume doctor will take blood then or schedule me for blood work to check the effects of the HU. Then a follow for the BMB 6/24.

Tom

I have the JAK2 mutation and, like you, my high platelets were discovered by blood work conducted to diagnose other issues. Mine were around 690 when I started HU, 500 mg 2x a day, 7 days a week. My platelets dropped to normal (around 200) within a month and my dosage was reduced to 500 mg 2x a day, 4 days a week. I also had a bone marrow biopsy to rule out other blood disorders. While this test is not always necessary, my hematologist recommended it to make sure we were dealing only with Essential Thrombocytosis and not something more serious. My biopsy was negative fortunately.

I take my HU with breakfast and dinner - I have had only minimal side effects, mainly an occasional short headache. My doctor did not have a recommendation on the best time to take HU but agreed that with food may help mitigate some side effects. So far so good!

Good luck with your BMB and treatment. This forum has been a real blessing to learn how others are dealing with this disease and treatment.

Hi Tom, wishing you well with the next blood work and the BMB. From my perspective it sounds like you have a very attentive and responsive doctor who is being thorough in their diagnosis.
Will you check back in here after you get your results?

Hi Lori, thanks for your words of encouragement, I appreciate it very much.
I will be back and report back on results. I am just really questioning the use of HU and the side effects mainly on my endurance at high elevation, eg the reduction in HG and Red blood cells. Hopefully , I am responding well and my number will come down and the dosage will be adjusted.

Thanks everyone

HU has not lowered my RGB to below-normal levels. (I am 70 yo F with CALR mutation, on HU for 6 yrs, 500 mg per day plus 1 extra on M/W/F, platelets in 400s.) If your platelets stay below 400, you might ask doc if you can reduce HU some more. Getting the right dose may take a year or two. Everything with ET goes at a snail's pace. Cultivate patience.

Most hemos seem to want to find the lowest effective dose that will keep platelets in the zone that will not increase stroke risk. They increasingly take your overall stroke risks into consideration (mutation type, age, previous clot history, food/exercise habits, family stroke history, etc) when dosing.

Drinking at least 68 oz water per day + Miralax once a week helps me with the constipation. I also take a probiotic once a day. I thought that was just New Age hooey until the oncologist suggested it, and it has made a difference. But, as always, mention to your doc before experimenting.

Have had ET for 15 years, and I feel pretty good. Good luck with the BMB. Mine went just fine and was over in 10 minutes.

Thanks for the info, just want to get this taken care of and adjusted to my new reality.

69 year old male, diagnosed with PV in 2021… I’ve been on HU since April 2021… My current dose is 1500 mg M,W,F and 1000 mg the other 4 days… My oncologist focuses on HCT in my case and that has been at targeted levels for the last 2 years… I get monthly blood tests and my RBC and platelets are consistently flagged as low… Despite this, I bike daily and energy levels are excellent… I don’t like the idea of taking so much HU but the only side effect I can attribute to HU is thinning of my hair… I will say that I do protect against exposure to the sun and use sunscreen and wear long sleeves when outside… HU seems to impact people differently… I don’t bike/exercise in higher elevations so can’t comment on that.. That’s my input… It may take a while for you to see how HU may or may not effect your exercise routines.. Best of luck to you..

Hi @dale1k
I am amazed at your high dose of HU since you say your RBC and platelets are consistently low. Has your hematologist ever considered lowering the dose? I have ET JAK2 and I do not know anything about HCT.
Eileen

I had similar numbers as yours when diagnosed in Jan. 2023 at age 69 with ET/Jak 2, no bone marrow test. My oncologist wanted to start me at HU 500 mg. 3/days week. I accepted 1x week for HU 500 mg, daily iron, and daily baby aspirin. After 18 months, I have settled in at 4x week with HU, 500 mg with each dose, daily iron, and daily aspirin. I'm not anemic, but I do have low iron levels. My platelets are in the low 500s after jumping back to 800K in April 2024. and I see the oncologist for blood work every 6 to 8 weeks depending on my numbers. I feel okay with some fatigue and very dry skin and dry eyes. How is your spleen? If it's okay, you may be able to drop back a bit on HU with the doctor's agreement. You may want to get a second opinion. Make sure your eyes are well protected. In the last year, I've lost the vision in my left eye due to corneal scarring. I had no injury or infection. My only change has been taking HU and having this blood cancer diagnosis of ET. I'm using lubricating eye drops 4 x day, plus prescription steroid eye drops for the eye with the scarring, 2-4 times daily to prevent further scarring. My right eye is fine, so I can drive and do my hobbies. I also had retinal hemorrhages in both eyes 6 and 7 years ago. Retina issues can be related to ET. Some loss of hair, but I had a lot so not too noticeable. I also take B12, Vit D, calcium, multivitamins, and Tumeric. Of course, consult your doctor before adding vitamins or herbals. I drink lots of water, green tea, and OJ with my iron. I stay away from processed foods. Take care, keep active, and eat healthy!
Karla