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A myMPNteam Member asked a question 💭
Venice, FL

I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.

May 4, 2021
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Answer Summary

Members dealing with rising platelet counts on Hydroxyurea connected over the shared frustration of the rollercoaster of ET management, with... Read more

Members dealing with rising platelet counts on Hydroxyurea connected over the shared frustration of the rollercoaster of ET management, with many confirming that watching numbers go up and down is stressful but common during treatment. Several members shared their experiences with different medications, including Hydroxyurea, Anagrelide, Interferon injections, and Jakafi, noting that finding the right dose often takes many months of adjustments and regular blood draws. A recurring theme was the emotional weight of having little personal control over the condition, met with warm encouragement to reduce stress, focus on positive moments, and lean on each other for support.

A myMPNteam Member

I've got CalR ET, am age 74, and have had high platelet counts for at least 6 years. My ET specialist is Dr. Drazin of Cedars Sinai Oncology in Beverly Hills. My ET medication has needed to be gradually increased. It currently is at 0.5 mg of Anagrelide twice daily. Platelets have been as high as the 800's but most recently were in the 500's. That may be due to reduced inflammation after outpatient surgery to remove three over-producing parathyroid glands
It's impossible to avoid stress, whether from watching changes in platelet numbers or from other problems in life. The MPN illness itself and the side effects of medication can cause unpleasant symptoms. I've found that reducing stress helps to reduce platelet numbers, which reduces symptoms.
If possible, try to focus on what's going right in your life, rather than on platelet numbers. Do whatever makes you feel better, like taking a walk or a bubble bath or talking with a close friend or growing flowers or, in my case, practicing piano. Plus I personally feel lucky that my ET hasn't progressed to anything more serious (unlike what many people on this site are experiencing). Good luck!

September 21 (edited)
A myMPNteam Member

Have had high platelet counts for over 25 years. Was taking Anagrelide for many years. Tried Hyderabad but I couldn’t tolerate. Once JACK 2 discovered, went on Jakifi and platelets have been under 500 since. My oncologist wants them preferably under 400 but I will be happy with 500. I always check my blood counts (now done every 3 weeks). I am very anemic so if they continue under 8, may need blood transfusions. Also have stage 3 kidney disease so have to be careful with my diet

August 2, 2021
A myMPNteam Member

Today my platelets were 798, they keep going up. So, the plan is to double the dose of 500mg on Monday, Wednesday and Friday and check again in about a month and see if that helps. I think the most frustrationg thing is that there is nothing I can do to make it better. If you are diabetic, you can change your diet and maybe that will make a difference. If you have some other type of cancer, they can cut it out and maybe that will stop it. We just keep getting our blood work and hope for the best. Having a glass of wine, my doc says it won't hurt.

July 27, 2021
A myMPNteam Member

You, too Karen!

July 27, 2021
A myMPNteam Member

Wow, that is high! I have an appointment tomorrow, so I'll see where they stand then. Hang in there, it's about all we can do.

July 26, 2021

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