Essential thrombocytosis with MPL mutation

Thank you Colleen. I’m doing well enough I guess. Platelets seem slow to drop but they are going down slowly. Hopefully will be under 900 next week.
Headaches still happen but less often and less severe. Brain fog/ disorientation is still concerning to me but again, seems to be happening less often and is less frightening. Fatigue comes and goes.
I’m not sure what is due to the Hydroxy and what is due to the high platelet count.

Hi @toykyolin, you’re currently taking hydroxyurea and low dose aspirin for your ET. It looks like the treatment’s been helping to drop your platelet level. But the encouragement of that is being overshadowed by unpleasant symptoms you’re having.

Unfortunately as we age, our bodies don’t filter meds through as quickly as they used to and medication levels tend to stay elevated longer. It’s not uncommon for this harboring of medication in the body to have us experience heightened symptoms of potential overdose. I went through that myself. You start feeling toxic.

You may not be able to stop taking Hydroxy but you may be able to make an adjustment to the amount. Some other members who are/were on daily doses of Hydroxy have also had side effects and were able to decrease their meds to every other day instead of daily. For most it seems like this reduction was helpful. I know @eileen11108 takes 500mg every other day now and her headaches from the Hydroxy are gone. The medication is still working for her at the reduced level. She wrote about her experience in this discussion. Here’s the post: https://connect.mayoclinic.org/comment/778218/

A couple of other conversations you might find helpful. Not sure if you’ve seen them or not:
How do you manage side effects of Hydroxyurea?
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~~
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
You could ask your hematologist/oncologist what they think about trying that for a few weeks. If you have routine blood work anyway it would show whether the Hydroxy is still working to decrease your platelets or not at the reduced intake. It’s worth asking!

Hi @tokyolin,
I am following up on Lori’s comments to you. I was diagnosed a year ago with ET JAK2 and have been off and off HU for short periods. My problem has been headaches. First I was taking 500 mg daily, then every other day, and now I am taking 500 mg on Monday/Wednesday/Friday. My platelets were 528 before this three day trial. I love taking HU this way and feel much better. I hope this slow method continues to lower my platelets. My next lab is July 7 and I will update.
Best wishes, Eileen

Hi @amyb52. Welcome to Connect. This is a great forum for meeting other members who share your similar health story.
The ‘normal’ guidelines for platelet levels can be anywhere between 150,000 to 450,000. Yours at 478,000 is a bit higher than the upper normal range. The main concern with elevated platelets is developing a thrombosis (blood clot). So your hematologist has put you on daily aspirin which can help prevent platelets from forming clots.

When to start treatment with Hydroxyurea can depend on what your risk level is for developing clots. Doctors consider three major risk factors for thrombosis in order to group ET patients into 4 risk categories. The 3 factors are: history of thrombosis, JAK2/MPL mutations, and advanced age.

The 4 risk categories are:
Very low risk ~ absence of all three risk factors.
Low risk ~ presence of JAK2/MPL mutations
Intermediate-risk ~ presence of advanced age
High-risk ~ presence of thrombosis history or presence of both JAK2/MPL mutations and advanced age.
Source:
https://www.nature.com/articles/s41408-017-0041-8
(Blood Cancer Journal)

So your doctor will take into consideration what your needs are by following your progress with taking just the aspirin for a while. If your numbers continue to rise then they may prescribe something to lower the platelet levels. Starting medications before they’re really necessary isn’t necessarily beneficial.

You’re wondering what the best websites are to learn more about your condition. Knowledge is power but as you know, the internet can lead you down some pretty scary rabbit holes. So these are my go-to, reputable sources to help new members get started. Remember not everything will apply to you.
This one is a good primer on platelets.
https://www.verywellhealth.com/normal-platelet-count-5186765
More explanations about thrombocytosis or ET from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
From Medlineplus.gov
https://medlineplus.gov/genetics/condition/essential-thrombocythemia/
From: National institute of health
https://www.nhlbi.nih.gov/health/thrombocythemia-thrombocytosis
Healthgrades:
https://www.healthgrades.com/right-care/blood-conditions/essential-thrombocythemia
Very well health:
https://www.verywellhealth.com/thrombocytosis-overview-and-more-5187124
Members in this support group are more than happy to help answer any questions or concerns so don’t hesitate to tag a member by typing in their @name or by replying directly in the conversation. That way the member will get a notification that they’ve got a reply to answer.
How often do you have your blood work taken?

Thanks for your reply, Lori. That is helpful information. I am getting a blood test about every three weeks now.
I have an appointment with my oncologist on July 11th so I will ask her at that time if I might try to MWF regimen.
Linda

Thank you, too, Eileen. I will be interested to see how you come out after your doctor's visit. It helps to know others' stories. I don't feel so alone.

Linda

@loribmt thanks for the sources of info. New diagnosis for me so want to learn all I can. Next blood test is August. Been 7 years in the low to mid 400's. Hope to learn from and share my progress with others experiencing the same issues.

My hematologist says 500 but mine have gone as high as 601 but it was after i had Covid twice. So, he agreed to watch for a few more monthly labs to see if they would go back down. 30 days ago they had dropped to 554 and i get checked
Again today.. so hopefully, they will go down some more. For the past 2 years mine have fluctuated in the 400’s. Best of luck.

Dear Tokyolin: I am “flynnconn” and you can check out my specifics in 2 previous posts on this site. Maybe very similar to yours. Or close enough. I have taken hydroxyurea 500 mg daily for about six months. My highest platelet count was 611 before starting HU. And by using HU it came down to 250. But my hair was falling out, I was very short of breath in doing the simplest of things, and experienced extreme fatigue, so tired and weak, to the point I would doze off while watching a movie with friends. I am 83 years old and before this in very good health. Even now, before taking HU, had no symptoms When I complained to the hematologist I couldn’t tolerate this situation any more, he not only told me no , he said I should continue as instructed and see him again in 3 months . That prospect seemed outlandish to me. I was so miserable I told him I couldn’t possibly go on like this. The discussion then took on a kind of Turkish bazaar feel. He then said well then once every other day, but I did not agree. Then he offered 3 times a week. After this disturbing exchange, I agreed but immediately began looking for another Dr for a second opinion. Or at least a second approach. After all. It’s my life that’s in play here. And in meantime I lowered my dosage to twice a week, wanting to see what would happen to the platelet count with this lower dose. I almost immediately felt 100% better. After a month, bloodwork at my annual physical with my regular GP showed, yes, platelets had risen (to about 480) but a number I had been living with for years before going to a hematologist . After GP visit I lowered my intake to once a week. A month later my platelets had dropped to 450.And the terrible side effects had not returned. Soon I am going to see the new Dr at a well known clinic in NYC who specializes in myelofibrosis and the elderly. (After a bone marrow biopsy in January my diagnosis had progressed to prefibrotic myelofibrosis.) So I may have another decision to make in the future regarding medicines, to take or no, and how much. t. I only know for sure that my dr wasn’t happy with my refusal to continue with HU. But yet he was then willing to negotiate a lower dose on my insistence. Could it be that some doctors, maybe because of the rarity of some disorders, and especially those with mutations, just don’t know enough. Or don’t like to be questioned. I guess my bottom line so far is it’s your decision whether to endure a medication —maybe even a doctor—that doesn’t seem to be working right for you. If you are miserable, as I was, there could be other ways to treat you. That’s what I’m hoping for.

Flynnconn, thanks so much for sharing your story. The dr. who said I couldn't get off of the
HU was my p.c., normally very understanding and kind. She is worried about me having a stroke. I go back to the hematologist July 12th, so I will bring the matter up with her. I totally agree with your decision to seek another opinion and to change doctors. Yes, some don't like to be questioned, but it is your life. I am 83, too, and I agree with you. It's our life, and we need to exert control over it.