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How did you make the final decision to begin HU protocol for ET?
Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have suffered a thrombotic event post-knee surgery in 2021, therefore my MNP specialist ( Hematologist) is recommending I being Hydroxyurea ( HU). I am so hesitant to take it, for many reasons, and trying to connect with others' decision-making process. My doctor did a fellowship with Mayo Clinic, however, I am still considering going to the Mayo clinic for a second opinion. Mainly for a timeline of when I truly HAVE to being HU protocol to reduce risks of stroke, heart attack, and clots. My counts are between 570-680 platelets. I do suffer from headaches, very cold hands, and feet, and tingling in my calves ( I am told this is not related, but I can feel my calf muscles twitching almost all the time. I get fatigued, but I remain very determined to keep healthy movement. I cycle 5 days a week and hike when the weather allows. Mostly, I would like to hear others' experiences from diagnosis to when they started on HU, and what ultimately helped YOU cross the line to treatment. Thank you,
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Pegasys is a great way to treat an MPN. You must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix. He is awesome!
Erikaerika,
I just looked at NIH.gov and as of 2020 the median survival age of people with ET age 40 or under was 35 years. So some live longer than that.
Have you had a bone marrow biopsy and do you have a mutation such as JAK2?
You could consider getting a second opinion with an MPN specialist who handles a higher caseload of rare diseases like, ET, PV and Myelofibrosis.
Best wishes to you, Eileen
Onset of ET was about age 55 based on past CBCs, diagnosed at 60 thru BMB and CALR mutation test, on HU since age 63 when platelets edged up to 800, now 68.
Occasional blinding visual migraines, brain fog, and fatigue at onset. The docs kept wanting it to be menopause and thyroid. An astute nurse caught the history of high platelets and that made the docs pay attention and get me a diagnosis.
Migraines, fatigue, and brain fog improved after I started HU. Platelets swim around in 400s now with an occasional spike into the 500s. My son was born in my 40s, and my energy levels when he was in his later teens was low. He was a great kid, but I really berated myself for not being the mom who volunteered as I did when he was little.
I take covid and flu precautions and haven't been sick in 3 years, but when I did get a cold, it lasted forever. It takes a little longer for dental work to heal. I have more light sensitivity and increased sensitivity to scents and hair products.
I have a good-enough quality of life, but I am not the high energy person I once was. I had to retire at 63 because I was also doing elder care for my mom. This was a very depressing time and took a big chunk out of my retirement benefit.
I might have applied for disability, but was too proud to do it.
Retirement was very difficult psychologically. I am learning to see the glass as half full instead of wanting to smash the glass in frustration because I cannot do what I used to. I feel content most days now. I sometimes feel lonely. I don't look sick, and family and friends are not very alert to my limitations. But I am learning to accept that this is just how it's going to be.
I've learned to pace myself so I don't become a trial to myself and others. But I am not helpless, and I am not in any pain or prostrate with exhaustion as long as I know my limits.
Do take into account that what I am telling you has as much to do with my own psychological quirks and aging as the ET.
Fwiw, a lot of people diagnosed in their 30s or 40s say they have been on HU for decades and have no symptoms. Lots of research is being done on younger ET patients now.
You were probably not told about lower platelets in pregnancy because your OB doesn't know about it. ET hits only one person in 135,000, rarer in younger people. You may be the only patient with ET he's ever had.
Hope this is useful.
That is such encouraging news. Thank you! I did have a bone marrow biopsy & I do have the JAK2 mutation. Whats interesting is that its not yet being picked up in my blood alone, which is why they were having a hard time trying to figure out why my blood count had been high for the past 2 years. She said the mutation is only appearing in 2% of my cells; but she did also say that they don't have enough research to know what that means exactly. So course of action is still the same regardless of the percentage of the mutation. It's all still very confusing for me. I'm trying to make sense of all of this. I've tried to do research but it's still just causing anxiety. I don't know what the percentage is that this might then lead to leukemia or if your on the medication for a long period of time it increases the odds of that happening. Can I ask what a MPN specialist is? Would I have to go somewhere specifically to find someone?
I just typed in MPN specialists and it came up with a list by state.
I am also on a website healthunlocked.com that is based in United Kingdom with participants from around thr world. It is sponsored by MPN Voice. I have seen lists mentioned there including United States. Do you live near USA teaching hospitals?
Eileen
Erika,
I just went to MPN website and asked for MPN specialists. It took me to voicesofmpn.com. You can find a list there.
Eileen
Recently diagnosed with ET/mild PV, I too am about to start treatment for the first time. They Mayo 2nd opinion MPN specialist said why not try Interferon, so when my local doc said: HU or interferon, I opted for interferon. I just had my first phlebotomy yesterday, will have another next week to get my 52% Hematocrit level down, then get my first Besremi shot. I was surprised to be offered Besremi rather than Pegasys, as I think my town is rather backwater compared to big cities, but that's what showed up as on offer for me. The clinic financial people will talk with me about expense on Monday. I have traditional Medicare, supplement G and part D for drugs, but it will be thousands of dollars each year if I can stay on it. Her first estimate was $18,880/year, but at that point she did not know about my "gap" plan, so we'll see. They say companies do some $$ sponsoring, for political reasons, I suppose. I was expecting to pay $3300/year or so for Pegasys when I last looked into it. But then no one is asking about the financial pain! (sorry, just on my mind...) I will definitely post after treatment.
No one has hypothesized as to why I have not had thrombotic problems despite high platelets for 20 years, but since I should have had problems based on family history, but have not, I personally give some credit to 40 some years of organic, vegetarian (lately vegan) food, bike commuting, yoga, & dog walking (ha!) Reading, art, writing and gardening are my go-tos for "lifestyle." If my personality wasn't stress&worry-based, I might have escaped this mutation, but personality is pretty hard to control. Trying qi gong now, as it helps me to breathe deeply. I'd love to read what doctors and other medical folks advise to MPN patients. I hope people chime in with advice they've been given. I know diet is not a big part of many docs' training, so we might have to go further afield to find answers. Anyhow, here I am amongst the beleaguered and frightened, so I have no boasts to make! Best of luck sent your daughter's way!!
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2 Reactions@treeore, do share with your doctor or someone on your medical team about the financial pain. Social workers or someone on the team can look into options. See this article about oncology social workers:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
I don't know specifics about Besremi or Pegasys in particular. But in general your provider can help with:
- finding co-pay assistance programs through pharmaceutical companies or foundations
- navigating off-label medications not covered by insurance companies
and more.
I wonder if Besremi or Pegasys have financial assistance programs?
It's very helpful yes. Thank you for sharing. Everyone around me keeps telling me everything will be fine. But they don't quite get how I'm feeling. It's nice to be able to connect with others that truly understand. I too have migraines with visual auras. I feel my vision has changed too & I recently noticed a ringing in my right ear that has lasted over 1 month now; my hematologyst seems to think it's all unrelated to the ET.