Essential Thrombocythemia: Looking for information and support

Another Jean here! 70, ET-CALR for 15 years. Have been on HU for six years. Talk to your doc about immunity suppression. I was told that, yes, it adds to compromised immunity along with age and co-morbidities. I was advised to take a daily multi vit.

I caught a bug mid-December (not covid or flu) with a cough that dragged on for 8 weeks. Husband brought it home after he did a musical presentation for preschoolers, and his was much milder and lasted a couple weeks.

But until this year's bout I haven't been sick since before covid. I keep a mask in my purse that I put on if a store seems crowded. I avoid theaters, church, and peak restaurant times. Have been vaxxed to the max. I wash hands a lot.

But that's just me. HU and compromised immunity seems to be different for everyone.

Welcome to Connect, Jean! As you’ve discovered, there are a number of members in the forum who have Essential thrombocythemia along with the JAK2 mutation. It helps to know you’re not alone when you’ve been given a diagnosis that you may not have heard about before.
It’s really encouraging that Hydroxyurea is helping to get your platelet levels back down into the normal range so quickly. I’m sure that’s a huge relief for you! I know no one wants to be on these meds but they’re around for a reason. They work.

You may have already read some of the other posts with information about the JAK2 mutation and the conditions this acquired mutation can cause. If not, here are a couple of links for you that might be helpful.

https://www.verywellhealth.com/jak2-mutation-5217909
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https://www.healthline.com/health/primary-thrombocythemia

You have some great questions for your doctor about being immuno-compromised while using HU. Unfortunately that is one of the potential side effects of taking a medication such as HU. The medication suppresses the immune system. There’s not much you can do to change this. However, making sure you get plenty of sleep, eat healthy foods, exercise, etc…all the basics will help keep your body healthy. You’ll also want to be cautious in public or even family settings where there are a number of people gathered. It’s important to avoid exposure to illnesses, whether airborne or food related. Having Covid around helped prepare those of us who are compromised. Same protocols apply. So you may want to grab a mask to wear when you’re in an elevator, crowed store, church, etc., just to give yourself some added protection.

I’m sorry to hear about your mom and her ovarian cancer. I can understand your concern. That’s a big decision whether to have your ovaries removed or not. Have you had genetic testing to see if you carry the BRCA mutation?

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.