Essential thrombocythemia: Interested in connecting with others

Hi Karla. Yes, I have tingling in my feet and some numbness. It is very bothersome when I am trying to go to sleep. I take two 500 hydroxyurea a day and twice a week I take three 500 hydroxyurea, and of course a daily 81 milligram aspirin. my platelets went up approximately two months ago. When this happened my doctor put me on three hydroxyurea twice a week. My platelets came down to 421 my last lab test. If my platelets stay down, I am hoping he will take me off of the three twice a week. I feel the tingling and numbness in my feet is due to the hydroxyurea.

I've had this tingling feeling and numbness way before I started the hydroxyurea and before I was diagnosed with ET. My Mom and I are thinking it could be a separated issue. Ive seen a Neurologist and they did a nerve test and it showed that I have a lot of nerve damage in my lower legs, calves and feet.

recently diagnosed a case of ET, advised for bone marrow biopsy and Hydroxyurea, Still convincing myself to get into it and get marrow biopsy done and reluctant to continue HU.
good advice welcomed

Welcome to Connect, @muhammadazam. I think we’ve all been where you are at one time or another. Dragging our feet to avoid facing something we’d rather not. Am I close?

ET, a condition where you have elevated platelets, is generally well managed with hydroxyurea (HU).
The condition can have various causes such as an acquired genetic mutation, changes in the bone marrow itself or other factors. Your doctor wants to make sure your bone marrow is healthy and also able to produce healthy blood cells. They also want to make sure you’re properly diagnosed in order that you get treated with the appropriate medications. So that’s why they ordered the bone marrow biopsy. It goes to the heart of the blood manufacturing site…the marrow.
Living in denial isn’t likely to change the diagnosis but it may delay potential beneficial treatment. I think avoidance leaves a person carrying a heavy weight of “fear of the unknown” on their shoulders…stressful, right? I’d rather just know what I have, face it head on and move on from that. Obviously I’m a rip-the-bandaid-off person! 😅

What are your concerns? You mentioned reluctance to continue HU. Are you already taking it? Are you experiencing any side effects? Most importantly, has it been working to reduce your platelet count?

The bone marrow biopsy is usually worse than it sounds. My doc gave me Xanax and numbed the area with a topical anesthetic. It was less painful for me than dental work, and over in about 15 minutes.

Depending on your age and how good your insurance is, you might be a candidate for besremi or ruxolitinib, interferon drugs that are alternatives to hydroxyurea.

Are you having side effects from hydroxyurea? You might ask your doc if you could lower your dose and work up to what is effective for you. That can sometimes lessen side effects.

I have had ET for 17 years, and have been on hydroxyurea for 6. Hope this unformation helps.

Dear Tessa,
When first diagnosed in 2020, my symptoms were unrelenting fatigue requiring a CBC. I, my P.C. and an oncologist were amazed that I had PCV since nothing else indicated that condition. A bone marrow biopsy was never mentioned so evidently not needed. Evaluations by three oncologists agreed the course of treatment would be, and still is, a daily aspirin, bi-monthly blood tests followed by phlebotomy to remove 495 cc's of blood with 500 being a full pint. This has kept my blood test "numbers" within an acceptable range. I am adverse to taking chemo because I cannot tolerate most medications, phlebotomy is keeping things in a "holding pattern," and I have other medical conditions that I do want to be affected by ingesting a chemical. However, five years of withdrawing blood has caused "induced anemia" which adds to tiredness. As long as phlebotomy is being done, the anemia will remain. However, I prefer phlebotomy vs chemo, and at age 79 I deal with some days of extreme exhaustion. Although taking a chemo. pill rather than phlebotomy is convenient for some people,, the original treatment has been successful for me from the beginning in 2020. I live from blood test to blood test and usually have two to three months without needing any intervention except the daily aspirin, hydration and a healthy diet...small prices to pay to avoid ingesting a chemical. I live alone, need to function doing day-to-day chores and be able to drive. This "new normal" is not ideal, but works as well as possible. Five years of treatment have taught me to speak up, hold my ground, ask questions until everything is clearly explained, continue researching and be firm but not stubborn. Best of luck and know that you are NOT alone!

Could be from ET. I had the numbness symptom before diagnosis. Unfortunately it is neuropathy and I don’t think there is a cure-especially once you have damage. However, I found acupuncture helps with that symptom.

You are young, so may be considered low risk and watch and wait best approach. You might want to look into using interferon rather than HU since you are childbearing age. I would stay off the drugs as long as you can. Once we go on them we are on them a long time and can develop intolerance to the drug. Also, all the drugs have side effects. If you can manage the symptoms good to do that if you can. I am 69, was just diagnosed this year and I am triple negative. If you can get a bone marrow biopsy, I would do it. Good to have that info for treatment decisions. Also I think you need the bone marrow diagnosis to diagnose ET.

Hi @eloise999 ,

I think you are correct that bone marrow biopsy at diagnosis is best now; however, there seems to still be controversy on how things like fibrosis are graded and the subjectivity and expertise of pathologist giving diagnosis. I 100% agree with you about staying off the meds the docs try to give as long as possible. I hope new ways to alter mutated driver genes back to normal is researched better sooner than later and not just for JAK2 mutation for which I do not have.

Yes, great points. The more I read and learn about other patients the more I have come to believe that much about these diseases is not well understood. Two patients might have ET, but have, practically speaking, different diseases from the standpoint of symptoms and treatment efficacy.