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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!
Replies to "Hi Lydia, Thank you for your response and personal statement about ET. I have no gene..."
Hi Everyone, I have ET for 20yrs. On Hydrea and aspirin for 10 years. Triple negative for mutations. Side effects for Hydrea and asprin were gut issues. Heartburn and some mild esophagus and constipation. Now I drink 100 oz of water daily, take meds with food in the morning and went gluten and dairy free and am doing much better. I am 68 yo female and doing pretty well. Yes I do worry about thrombosis and stroke snd PE. But overall doing well.
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
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I have been taking hydrea for 9 years. My dose was inreased 1.5 years ago. I have recently developed pancreatitis but am trying to find out if it is a side effect of hydroxyureaa. I am more afraid of a stroke than anything else