Essential Thrombocythemia: Looking for information and support

hi Colleen, Yes, I guess integrative is what I'd call my approach to healthcare--Chinese herbs and acupuncture, yoga and qi gong, supplements and herbs, and healthy eating. Working on calming, appreciating what I have. All this has been my mainstay, but it is hard to know when to break pattern and go with heavy drugs in order to prevent, according to western medicine, the onslaught of MPN progression.
Bone marrow test just verified the ET diagnosis, noting nothing else abnormal except mild PV. I keep reading about "allele burdens" but my doctor did not even seem to recognize the term, which worries me. I made an appt to do tele appt with a hematologist at Mayo Clinic in a month, will attend a Cleveland clinic zoom this weekend, and just signed up for a nutrition/inflammation study from UC Irvine. Can you hear my heart beating fast? Oh, maybe that is my poor brain.

How was your biopsy ? I was wondering about acupuncture ? Or Chinese herbs .. You have the same concerns as I do wish you all the best !!!

Sherna09, I think I just lost the long response I was writing to you. In brief, I am still turning it all over. Watched the Cleveland clinic MPN conference this weekend, will have a video appt with a MAYO doctor in December and will talk to my acupuncturist in more detail next week. I can share more then and hope you will feel free to share your thinking as you maneuver your diagnosis --privately or through posting. Currently dealing with choosing Medicare for the first time and very overwhelmed with all this. Best to you!

Update!!! We did labs last week and my platelet count is down in the 640 range, so it came down again!! My Hematologist will have me continue the dosage of Hydroxyurea 500 mg per day then 2 on Saturday for another 4 weeks, go back for labs in December to see where my platelets are and if still dropping, she will do another lab in January and meet with me and go from there! Praying this dosage continues to lower my platelets because I am having little to no side effects! Just lower stomach pains here and there, which is gas, but I can live with it. May start taking GasX daily about an hour after my Hydroxy and see if that helps at all. Know that I am praying for each and every one of you daily for health & healing. Happy Thanksgiving to all and God bless!
Tifnie Queen

My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With Hydroxyurea 500 mg and aspirin 75 mg every day they came down to 480. Walking , swimming, cycling had been my regular routine for years. Don’t know what must be the cause but after taking two doses of Covid vaccination COVISHIELD and was covid positive twice, these high platelets were accidentally found in my yearly routine blood test. Dr feels covid infection can be the reason . Would appreciate views from others too with similar experiences and guidance .

I was just diagnosed last week with ET (CALR mutation) as a result of a marrow biopsy and a routine test resulting in a platelet count of 1700. Looking back over 8 months or so ago I noticed large lumps were resulting from contusions, which was new for me, but regretfully, I didn't get checked out. I have been on 1000 mg of hydroxyurea for over two weeks which lowered it to 1300, and just had the dosage raised to 1500mg 3 days ago. Luckily I have had no side effects from it. I am a very healthy 53 year old male, bicyclist, and have been eating super healthy in an attempt to shed blood pressure medication, so this was a huge let down. My physician tells me not to travel for work until the platelets are below 1000. I carry a lot of anxiety over being terrified of a stroke, or something that will incapacitate me as I'm told of the risks I have of developing a clot, stroke, or myelofibrosis in the next 15 years when, at my age I still plan to be working. I was told to basically keep doing what I am doing eating healthy and exercising and come back in a month for another test. Anyone else get any advice on something different they should be eating / avoiding / doing? One word of caution - Do not take hydroxurea right before a big meal. I did that and it bloated me to the point where I thought my stomach would pop! Wish all of you good health.

I eat a meal and then take Hydroxyurea 30 minutes later with full glass of water. I drink the minimum of 64 ounces of fluids. No stomach distress doing this.

I find taking a daily probiotic has helped a lot with wind and gut discomfort.

I take HU before bed, never with food. I feel full if I eat much more than a bowl of soup or a small plate at one sitting. I don't have the enlarged spleen many ET patients have, so not sure what that's about.

A plain cup of black decaf tea in the evening seems to help with bloat. So do some stretching exercises or a short walk.

I have cut back on starches and sugar and to eat four smaller meals. And yes to making sure you get you 64 oz of water.

We are retired and have no extended family, so the holidays are less overloaded with food than they used to be.

Hi - My name is Ginger - I am 77 and was recently diagnosed with ET JAK2 in September of this year and have had the red feet and ankles. I also have red splotches (for lack of a better word) on the back of my left leg. These are not painful - just unsightly. I have a small level of numbness in both feet and in my left leg. These things are recent. My hematologist/oncologist prescribed hydroxyurea 500 mg daily. I had no side effects the first month. I had a bone marrow biopsy and it was confirmed that it was ET JAK2 . My platelets went from around 600 to normal within 10 days of starting the hydroxyurea. I was thinking all was great.....then the sores in and on my mouth appeared and my doctor took me off the hydroxyurea for a 5 day period and I am to start taking it again every other day. It has taken a toll on me - it was difficult to eat and swallow. I still continue with the low dose aspirin which I was already taking when I was first diagnosed. Now I am terrified to go back on a full dose of the hydroxyurea for fear of the mouth sores. This is all so new to me. Has anyone else had problems with sores in their mouth as a result of the hydroxyurea?

I wrote and posted this previously, but I must not have saved it properly because I cannot find it. This is such a great and informative place to learn so much about ET JAK2