I am 44 years old. I was diagnosed with ET 3 years ago. My platelet count had been pretty steady at around 700, sometimes it would spike to mid 700s or up to as high as 800. My last visit was 846 and the Doctor began to panic a little bit. She wanted me to start Hydrea 500mg 3 times a week to get things settled down. I am hesitant. I am in pretty good health otherwise. I have never had clots, maintain a good weight, eat well, don’t smoke, rarely drink. Because of my age and health our plan was always baby aspirin until I was 60 then re-evaluate to see if medication is needed. I was okay with that, as I have no real symptoms other than slight fatigue, but it does not affect my daily life. I got home after my appointment and my gut was telling me to find a support group. Thats what I did. The group has already been so informative and has taken away some anxiety. I am hoping someone in my age group can offer me some solace and maybe some advise. I am not seeing an MPN specialist just the hematologist. I think I want to see a MPN before making the decision to take the Hydrea, but the closest one is 3 hours away, that I can find, and who knows how long before I can get in.
Thanks for listening
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JT1622
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Most MPN Specialists would not initiate cytoreduction in a patient your age with the history and MPN profile you describe. If cytoreduction is indicated for some reason, many would recommend Pegasys for someone your age. HU comes with long-term risks and is not recommended for persons of childbearing years.
Suggest that you get a second opinion from a MPN Specialist before making a decision. You will want to review all of your treatments options - continue monitoring, Pegasys, Hydroxyurea are the primary options. There are also drugs in clinical trials if you are interested. Here are lists of MPN expert docs.
The drive is definitely worth it. I consult with a MPN Specialist a couple of hours away once or twice a year. I have a wonderful local hematologist who handles the ongoing care. This arrangement works great.
definitely see an MPN specialist . My haem wanted me to start HU when numbers reached 1500. When I asked him how many ET patients he had , he wouldn’t answer. Not sure how much experience haems have considering it’s an unusual condition.
Like you no history of clots etc and ET doesn’t affect my life in any way. Managed to see the specialist who completely agreed with me that HU was not necessary.
On diagnosis in my late 40’s, I too had fatigue. My vit B12 was very low ( not low enough to worry drs, but that’s another story) and very quickly after I corrected this deficiency, my fatigue vanished and has never come back. Have your vitamin/ thyroid levels ever been checked, just to rule these out as causes of fatigue?
At the end of the day, the doctors advise and you decide anyway.
I found pubmed a very helpful tool to see all the research papers . Very easy to use.
Mary, thank you. I have young kids and I am terribly afraid of making a decision that could potentially harm them. I feel like Hema did not take anything else into consideration. Just the numbers. This group had been a blessing
Pity about Peg . I experimented on doseage as instructed by MPN when not tolerable. I came off it 8 weeks then only 30 monthly body got used to it & now on 45 monthly no side effects. Julia 👌
I had a dose of 90 (a mistake by my nurse, that put me in ER ). Then the dose was reduced to 45 every week. Then 45 every other week. Then 30 every week. I couldn't tolerate that either. My hematologidt told me that reducing it further wouldn't make sense as it wouldn'be effective.
It’s a shame not to experiment as my approach to an MPN did. I couldn’t tolerate even the aspirin . Hydroxy I rejected due to gastric pain interferon made me feel horrendous spaced out.
BUT a year later here I am with platelets down to 340 & everything within range on peg interferon I couldn’t tolerate. MPN kept me off everything then 30 of Peg monthly. That we didn’t want results from , just for body to tolerate. Kept up 30 for 4 months all ok . Increased to 45 monthly & gradual decrease in platelets. Kept on this & now almost very normal range along with all other blood results.
I believed in MPN advice & if anything didn’t suit my body I stopped immediately. The body has adjusted even though a long time the results are good & feel brilliant. I really hope if you did this your body would accept it . I eat no fast foods etc drink loads water & walk Julia 👍
Most experts don’t tend to use cytoreductive meds for ET if platelets are under 1 million, unless symptomatic or other health risks,aspirin yes, also if meds needed most experts would probably suggest trying Peg or Bes first at your age, platelets can jump up and down by two hundred from day to day hence good haems would never conclude anything from one reading of 846. It’s the trend that counts. Seeing the right expert no matter how far it is is a very good idea, he/she can set you in the right direction and write or call your local Haem , if you can it’s good to keep in touch with the expert from time to time, I tend to do that yearly or so if no drama. Some of it can be virtual.
I am 48 with ET jak2. My platelets stay in the 600s. No other symptoms other than headaches, fatigue and itchy skin but since taking aspirin daily , my headaches have improved. My hemo tried to put me on hydrea and I refused. I am healthy and jog daily and only knew I had ET was it showed up in routine blood work. Maybe i Google info too much but I am too scared to start Hydrea. My hemo was a little frustrated with me. I will stick with aspirin and will not start hydrea unless I see an MPN specialist.
like Hinter and others, I also drive to my MPN Specialist two hours away with the car. It’s a huge difference to have an MP and specialist as opposed to just a haematologist. HU does have side-effects. I was not able to take it more than two days because I had terrible neurological symptoms. I started cytoreduction at 823,000 because I had already had three TIAs. I have three more after my thrombocytes were reduced around 600. My diagnosis was six years ago I am 58. I had ETA7 years before that without knowing .
I was put on anagrelide because I have Hashimoto and what is not offered Pegasus because of this. Anagrelide has now caused me heart problems and I was able to switch to Besremi which is another form of interferon, which is newer on the market. This has helped greatly and the heart palpitations have subsided as also my high blood pressure and other symptoms from anagrelide. Since I worked on my body a lot, and was able to reduce my Hashimoto thyroiditis and keep my immune system balanced. I’m doing fine until now. The interferons are the only possibility of actually reducing the illness not just managing it. Add to the last MPN international seminar in Vienna. My doctor said the earlier a patient starts on interferon, the more possible it is, to perhaps put this illness in remission! 😁
make sure you do a lot for your physical health. An autoimmune diet is really important as much organic as possible and reduce all chemicals from your home environment and from your food. Clean water clean air. I cannot stress this enough.
make sure you go to every doctor’s appointment. Well prepared with all your questions written down and it is important for cancer patients to really advocate for themselves. Every single one of us is different and we have to be treated differently. There is no fix for all. Good luck hope to have helped Anag
You’re getting some great input here. My thoughts are in line with hunter and ainslie, among others. When I was first diagnosed with PV at age 44, my doctor said we’d monitor until age 60, unless the platelets got up around 1 million. They were in the 800s several times, and we stayed the course. I’m with Hunter that Pegasys would be better to try before hydrea if you had to do something, especially given your good health and young age.
I am 50 diagnosed (ET Jak2+) 4 years ago and started cytoreduction about 2 years ago. At first was on watch and wait (aspirin) only - platelets at a steady climb for about a decade from 450 to 950. MPN specialist was fine with platelets up until 1.200 given no history of thrombosis and generally very good health (also low symptom burden) -when platelets jumped to 1.400 with bleeding at the gums, he suggested cytoreduction. Started out on Hydroxy but did not tolerate well and given age and potential to slow down progression, I wanted to switch to Peg anyway. Have been on Peg for about 18 months and fine - platelets back down to 450 and feeling pretty good.
I would repeat the suggestion that you make the trek to see the MPN consultant. Once you've established a relationship you can likely see them a few times a year and do any follow up meetings via Zoom or with your local hemo. These are rare diseases and the expertise of a good MPN specialist can be invaluable.
54 years old here, diagnosed with ET CALR almost 13 ago (but high platelets had been spotted several years before), all this time platelets have hovered within 900 -1100k range. I have stayed on aspirin only, no issues so far, have been living and enjoying a very normal life all these years and hope to stay on this path. I am checked by a specialist dr (still the same one over the years) every 6 months, everything looks good except platelets (of course) and an always elevated LDH, which my dr says it's expected and not a cause of concern. Living in Eastern Europe (Romania).
I would definitely see an MPN specialist. A high platelet count does not mean an increased chance of a clot , as counter-intuitive as it sounds. I am on Pegasys (interferon), and at your younger age it might be another option.
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). Then the dose was reduced to 45 every week. Then 45 every other week. Then 30 every week. I couldn't tolerate that either. My hematologidt told me that reducing it further wouldn't make sense as it wouldn'be effective. 
Hydroxyurea vs aspirin question
Hydrea 
Dr. removed hydrea and placed on baby aspirin only 
ET jak2 to PV
