Essential Thrombocythemia: Looking for information and support

I was diagnosed with ET in November after my platelet count had been rising slowly for several years. A test showed I have the JAK2 mutation. My platelet count was 580 according to the lab, but a test in the blood doctor's office showed 450. I started taking HU daily & the last reading was 340; my doctor told me if it continued to drop the medication could be reduced to fewer days per week. Fortunately, no side effects that I've noticed.

I will see the doctor next in a few days. A few questions I want to ask him, including (1) am I now "immuno-compromised" because of the HU? and (2) if my white cells are also dropping, increasing the risk of infection, can anything be done about that?

The diagnosis was scary, but I'd been worried the rising platelets might indicate ovarian cancer (which my mother had), though I've always tested very diligently for that & everything looks good. My new gynecologist has recommended having my ovaries removed as a preventative, but I've been reluctant to do that though I'm past menopause -- but that's another issue.

For now, again, I'm very thankful to learn of this forum & will read all of the posts. It's a great resource for support, information & connection. Thank you to Lori & all who have posted & shared

Jean

@taisaint and @colleenyoung, asking for a referral to a dietitian is important to reduce your risk of clots and stroke. Some dietitians have additional training to become board certified as a Specialist in Oncology Nutrition from the Commission on Dietetic Registration (CDR). It might also be good to see if the dietitian consult is covered by your insurance if you have a referral from your hematologist.

@taisaint, I would start by asking your hematologist for a referral to a dietitian. You may also consider an oncology dietitian. I'm also tagging @muradangie who may have further suggestions.

See this article from Mayo Clinic's Cancer Education Center
- How a Registered Dietitian Nutritionist (RDN) Can Help During and After Cancer Treatment https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-can-a-registered-dietitian-nutritionist-help-during-and-after-cancer-treatment/

Most medical centers have specialized dietitians. If you're a patient at Mayo Clinic, you can ask your team for a referral through the patient portal.

I am interested in consulting with a dietitian specializing in hematological disorders. Where did you find a dietitian with this specialty?

Thanks, Colleen! I wish every ET patient got a dietary and physical therapy consult! Diet and exercise play a big role in reducing overall clot risk. And some changes in diet and exercise can help with fatigue. I have had ET-CALR for 15 years, on HU for 5, and no clots so far.

Hi @sugarbeez (love your username), you might be interested in this discussion related to your question about nutrition plan and ET.
- Essential Thrombocythemia (ET): foods, diet, nutrition?
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/
Have you thought of requesting an appointment with a dietitician specializing in hematological disorders?

Thanks so much for the info Lynn! 20 years is a long time. I have just been on hydroxyurea for almost 3 months with 1000 mg per day. The counts now come down to low 500 now which I already appreciate while my doctor want to see it to stabilize at low 400. Just want to share. Have experienced some side effects (sensitive and itchy skin at the joints, fatigue, long recovery time, maybe some depression). I was very active outdoors doing cycling and hiking. Now I have learned to mend and adjust with reduced activities. I am in San Diego CA and will appreciate any resources info.

Hi @blondie65. I remember your concern over having the surgery and if having elevated platelets would interfere with your surgery. It sounds like the surgery was successful except for developing the blood clot. I’m happy to hear that you’re doing well and can hopefully put that behind you.

But wow, what an interesting turn of events for you with having your platelets drop without treatment. I’m sure you have your oncologist scratching his head over this. It will be interesting to see what your next blood tests show. Hopefully the numbers stay stable for you. That would be a nice way to start the new year. ☺️ Let me know what you find out, ok?
Have a lovely Thanksgiving.

Thank you Lori! I will review the recent link on Jak2 mutation and check back in.

Hi my name is Pam. I was diagnosed in April 2023 from a routine blood test.
My platlets were in the 700’s I was referred to an oncologist who put me on 1 baby aspirin daily. He ordered blood work which came back positive for Jax2.
I seen him again in August my platlets were 920. He only wanted me to take 1 aspirin daily. I also was having neck surgery in October and he said I would be fine to go ahead with surgery. I had surgery on October 10th. Neck surgery C4-T1. The surgery went well. I spent two nights in the hospital. I went home on the 12th. On the 13th both arms were hurting bad. I went to ER and was admitted. They did an MRI and there was a blood clot pressing on my spinal cord. I had a second surgery on the 14th. I went home on the 16th. I’m doing really good now. On November 17th I went to see my oncologist. My platelets were 466. They ran my blood twice. It came out 466 both times. They asked me if I had been doing anything differently and the only thing is that I have a lot of people praying for me. I go back to see him in February. I will keep you all posted.