Essential Thrombocythemia: Looking for information and support

1. Thank you for your service. I, too, was in the Navy a long time ago!

2. Appreciate reading all your journey these past 25 years. It's good for us to have your history when we are so new to all this - I only learned six months ago and still learning to deal with it all.

3. Yes, my heme doc said the same thing: not all ET = cancer. I'm Jak2 and it's a blood disorder. Period. Sure, it can mutate in time - or not. Better to look on the positive side!

Living? Absolutely! Any of us could get smashed by a big truck on the highway on any given day. ET is just a bump in the road. Blessings for your healing and dealing!

hello. I was diagnosed with ET over 25 years ago, while young and in the Service (Navy), at the age of 27-28. I'd like to share my experience living with this. Tho I am not JAK2, I have other mutations. This happened in 1998, when I was carrying my first child and they found high platelets, randomly, on all my monthly blood testing. The Navy hematologists found it and said something about 7 months in. I went on , not only to raise my beautfiul daughter, but again, having a son while on treatment!!! (just 11 years ago). Then, my E.T., just last year, after 25 or so years, mutated in Myelofibrosis. Looking back, I wished I would have tried to live an even fuller life with it, while young because the Navy wanted me to do two sea tours and i opted to get out. If it werent for the mild to mid neuropathies I suffered from throughout that whole time, i would have never known what I had. But I lived a great life anyways, and being that I couldnt run anymore (was a big youth runner), I spent alot of time riding horses and even goat herding (the last 15 years).
After having my daughter, they put me on Anagrelide. And, by the way, no doctor ever, in this entire time, told me this was cancer, rather just a disorder of the blood. Same with PMF, its like a malfunction of the bone marrow, but not like Leukemia. My platelets actually got up to one million, two hundred thousand. And the anagralide brought the numbers down pretty nicely, except it caused migraines and sever anemia. One VA hematologist gave me Procrit shots, and i swear, it was like i had my life back again! At the worse time, my daughter was only 2 to 3 years old and my husband worked out of town alot. And the Anemia was sooooo bad, i couldnt get out of bed to take care of her!!!! I turned blue. And a friend came along and told me that my coloring was off....so I changed doctors again, until someone helped me. In fact, that was quite a constant theme of the 25 years with ET.

Diagnosed with ET 5 years ago….high platlets led to Bone Marrow Biopsy to confirm and found Jak2 as well as other genetic markers! My second bought with Cancer so,less shocked…Cancer is just another name for something wild they do not understand fully.
Started Hydrea with an Oncologist who specialized in Breast cancer, then lung cancer…asked if they had a Mylofibrosis Specialist? Nope I was there only patient.
So I searched internet and found one of the best Specialists…fortunately in my hometown of PHX. Been going to her about 3 years…continued Hydrea…but started having side effects so tried Pegysus/Interferon…sleep 14 hr a day! Returned to Hydrea. Developed platlets stuck in my extremities…fingers and toes…and a sore on my big toe led to a vascular specialist….we did a surgery, started blood thinner and added a stent!
Took a while to recover, but been thru therapy and bought custom orthotics to walk better. That is where I am today…trying to manage the Hydrea does from 1000/ day to 500 to 500 every other day.
Went to city of hope since they have a Mylofibrosis Dept…they just wanted to test me to see if I am a candidate for BONE Marrow Transfusion….which I am doing because it may eventually go there if it progresses. BUT when I asked about Maintenance programs and clinical trials? They said I seemed fine…the ONLY a cure is BMT. I said thanks but I just want to maintain the side effects for now.
I experience every Rare Drug side effect you can. I have had my drug interaction tested multiple times. Found one making my gums fibris? A couple that are redundant. Took myself off statins when I could not walk for any period of time/ distance….Learned that I have to be in charge of MY Care! Doctors each havenTheir go to treatments and if they work for you great,,,.,but modern medicine does not allow them to truly focus on YOUR case. Being 71 and on Medicare, we get 15 minute appointments. So do your own research, this CANCER is rare and a lot of unknowns…
But you can live many many years without progressing!
Good luck!
Steve

Hi
Yes thanks,I drink 6x 500ml of water, decaffeinated brewed coffee, tea.
:lemonade so lots of liquids, have no appetite but am eating as need the strength- I want to sleep all the time. What gets me is that this low dose - can't imagine what its like taking HU 3 times a day.

Be sure to drink at least 64 ounces of water a day when taking hydrea...it will help with the side effects...we need to flush the toxins of the medication out of our system.

This is pretty normal - I had pain in that area for about a month - after first and second biopsy, I have ET /Chronic MPF/pre fibrotic myelofibrosis - platelets are 893, on 75mg Aspirin and 500mg HU this is my 6th day on HU. Feeling very disoriented and spaced out had a headache last night. Each day is different at the moment I guess my body is getting used to HU.
Good luck!

I would follow up with heme/onc MD. My pain cleared up in a few days. Hope you feel better.

Hi. I'm asking another question. I had a bone marrow aspiration and biopsy performed to have a baseline established. This was nearly 2 weeks ago, and my hip is still bothering me. I have difficulty, especially first thing in the morning with supporting myself on that leg. Is this normal? Will the pain eventually go away?

Glad to hear that your platelets are within the normal range. I forgot to mention that I also take the 81 mg aspirin....it was prescribed after I had the stroke (in fact when in hospital I was on heparin, but that was stopped when I left.)

Sounds like a good plan!