How Necessary Is It To Commence Cryotherapy If You Don't Have Any Symptoms Of ET? Platelets Are Slightly Elevated But Not Excessive.
You never have to start cytoreduction for asymptomatic ET unless you believe it is in your best interests to do so. There is a risk stratification system in place for ET. I believe your profile… read more
Pros And Cons Of Doing The IV Thing That Removes Platelets. How Does This Work? How Often? How Long Does It Take Each Time? Does It Hurt?
My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.
But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.
New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻♀️
Forgot to include the 20 year longevity study. The Anagrelide < HU study was separate from the phleb + aspirin < HU < interferon study.
So If One Was On A Med/meds For ET, Or Similar Issues, Besides Lowering Platelets Will It Also Fix Or Lessen Other Related Issues?
Issues such as chronic migraines, headaches, fatigue, itchy skin, worsened vision, occasional burning feeling in feet, intermittently getting hot, brain fog, body inflammation, etc.
Would peg interferon help these? Jakifi? What others?
Trying to learn 🤷🏻♀️.
Steve, thanks for your input. Always valuable.
Saw A New Hematologist That Says He Has A Lot Of Experience With ET And MPNs. He’s President Of The Group Of Hematology/Oncology Locations.
He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.
Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.
I think period issue, being 44 and also… read more
I go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the… read more
Long Term Chronic Headaches/migraines Are Considered Or Are A Complication To Decide A Cytoreductive (Rx) Treatment Option, Right?
I use Maxalt melts when hit with a Migraine
Does Anyone Have Further Insight Regarding Treatment/prognosis For ET With The MPL Mutation? .
My MPN specialist recommends no treatment other than a daily low dose aspirin. I am 67 years old without history of thrombosis or other co-morbidities. I was diagnosed in 2022 by routine blood work and BMB and am currently asymptomatic and active. Thank you.
Hi Hannah,
I had a fast look through the studies I saved over the past 4 years, and I found some guidelines for practitioners that I downloaded from somewhere years ago and it is stated there that in… read more
Do I Need To Start Hydroxy If My Last 3 Tests Went Down Platelets Were 497, 460, And Today 447. Why Are They Going Down, Only Baby Aspirin.
My Dr is starting me on hydroxy regardless I guess because of symptoms, fatigue and headaches. Anyone else in those platelet levels and on hydroxyurea. I'm a little apprehensive about starting it especially seeing that my levels are dropping. Is it too soon?
One more thing, I credit 6 day a week cardio, 20 min on bike and 20 min on treadmill for drops in levels, also lots of water and good nutrition.
Never make changes towards your meds unless advised by your Dr. As these are just not a normal medicine.
Pain And MPNs: Causes And Management. For Medicinal Mgmt Of Pain It List NSAIDS Which Cause Bleeding But Not Acetaminophen That Doesn't
It only verifies that we are all unique individuals and have different variations of needs and treatments.
My Platelet Count Suddenly Jumped From 450 To 650 In A 3 Month Time Period. Dr. Cannot Account For It, Just Wait & See. Anyone Have Ideas?
after I got over the craziness of knowing I have a chronic blood cancer ET with mutation of the jak27617F I now feel much better about it
I Have Been On Hydrox Meds For Several Years, I Presently Take 3- 500 Mg Per Day With Issues. Sores On My Ankles., Rashes On Face. Why?
I have been treated for 10 years with mixed results but tolerate as best as I can. Time for different meds?
Only you know best