Essential Thrombocythemia: Looking for information and support

@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.

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

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
~~
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?

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.

Es muy útil tu comentario .A mí me diagnosticaron con trombositemia esencial desde 2020 ,hoy tengo un millón de plaquetas y el hematólogo me va a medicar con Hydrea,hoy hay una medicación mejor que esa pero la obra social no me la reconoce.

Welcome to Connect, @jlore. Hydrea is a good first line medication for blood conditions such as ET. It’s been used for decades to help control over production of platelets such as you’re experiencing. I hope this works well to reduce your numbers. You mentioned there is another medication that you’d prefer but it isn’t recognized. Could you share what it is please?

Cuales fueron tus nuevas opciones y quería saber si bajaron tus plaquetas

Según mi hematología es buena pero baja glóbulos rojos y blancos y por eso trae otras enfermedades.Apenas sepa bien el nombre lo paso por aquí.Gracias por su respuesta

Thanks for your message. I was diagnosed with ET about 7 years ago at age 70 and prescribed Hydroxyurea which I take daily. My platelet count went from 1600 to 600 which satisfied my doctor and reduced the risk of clots. No other obvious outcomes so far. I hope this helps you deal with this disease for which no cause is known. I have reason to believe that my exposure to chemical weed killers may be a possible cause of the disease.

now into my 4th year of HU for ET Jak2. My platelets rose for 3 years before I went to hematologist/oncologist. With HU it took a year of trial/error to get my dosage right and side effects subside plus baby aspirin. While I'm not happy about daily chemo, its better than getting stroke or heart attack. My best advice is get a good MPN Dr take care, stay safe