Essential thrombocythemia

Hi, Lynnevb, I am curious as to why you went on hydrea after being on aspirin only for 11 previous years? I have ET with JAK2 and have been on aspirin only for the past 2 years. My platelets range in the mid 500s. However, I am nearly 83, and prefer not to take chemo therapy at this age. I Did your platelets start to rise? And, if I may ask, how high were your platelets when you decided to start the hydrea?

Yes, HU lowers platelets. Mine went from a high of 800s to the 400s. It took two years to get them there, but that's where they'venstayed x 5 years. I sometimes spike up past 500, but they always go down again at next test. Hemo calls this "very stable." I do have the CALR mutation, so I am at slightly lower clot risk than JAK2 folks. I am 70 yo.

Ditto Jane's and Lori's posts!

Best on the knee looky loo.

Hi Steve, I have been playing hooky a little this weekend with my visit to Mayo-Rochester for my BMT followup Thurs and then heading north to Mpls to spend the weekend with our daughter! ☺️ I still cruise through my areas of Connect several times per day and pop in where I think I can add some information or assistance. Otherwise, you can see we have amazing members like @janemc @nohrt4me @1995victoria and so many others who have ET and taking hydroxyurea who can offer priceless first hand experience.

As @nohrt4me mentioned, HU lowers platelet levels, but it doesn’t kill off platelets in circulation. Platelets have a life span in circulating blood of about 7-10 days. Our body produces a staggering 400 Billion platelets per day. And if they’re unchecked in their production you can imagine it can potentially take time to see changes.
The mechanism behind HU is that it inhibits the formation of DNA by blocking an enzyme known as ribonucleotide reductase. This results in the decreased ability of the bone marrow to produce platelets. As mentioned it can take time, trial and error to find the right balance in dosages.

Happy to answer questions any time. If I don’t know the answers chances are we have members who can. 😉

Just to add my two cents that may be helpful: My wife has recently been diagnosed with ET with Jak2 mutation at the young age of 72.
Her platelets were rising for the last 5 years but it wasn't picked up until a recent blood test where the platelets were above "normal". Once the trend was discovered, the ball started rolling to find out what was going on.
Her platelets in 2021 were 225.
August of this year they were 625. That's when more testing was done and she was put on baby aspirin 2x per day (which she was on anyway from a recent total knee replacement) and 500mg of Hydroxyurea. It's almost a straight line of rising platelets from 2021 to now. So to add to your information, Becky was put on hydroxy when her levels were in the low 6 hundreds. Hope that helps.

Hello pumpkin1, Thanks for reading my post. The protocol for treatment of ET according to many experts and my consulting physician at Mayo in Rochester is a bit long but I will try to summarize the major points.
Under age 60 with no history of clots and platelets under 1,500,000 treatment was only aspirin.
Over age 60 and platelets over 1,500,000 increased the potential for clots so hydrea was added.
Clots can happen anywhere in the body's vessels. So a clot in the eye would cause blindness, brain would cause stroke, kidney would cause kidney malfunction, heart would cause heart attack. So, to prevent clots and get the platelets down, hydrea was started. It took several months to get the platelets down to an acceptable level without lowering the other blood values to a a dangerous level.
In my case at age 60 my platelets had inched up to 1,500,000 so I started on hydrea. I had nausea for about a year but no nausea in the past 10 years.

Right now, I am on Hydrea 1000 mg 4 days a week and 1500 mg 3 days a week. My platelets hover between 500,000- 750,000. I am 70yo. I have no idea what causes the platelets to fluctuate in number and as far as I know no else does either.

I hope this was helpful. My best advise is to see an hemotology oncologist in consult with your local oncologist. In my case I have a local oncologist and I consult with a hematology oncologist at Mayo in Arizona. I believe that is why I am alive today.

Just for clarity I will say that my early consults were in Mayo in Rochester (that physician has since retired) and my latest consults were with Dr J Palmer in Arizona.

Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity of the disease. Only get maybe 1-2 "alerts" a month. An alert this morning led me to your post. Joined the "Mayo Group" here in order to answer you. Have never been to this "community" before. However, use the Mayo website frequently, as they seem to have the best experts and info on ET. "Lucky You" to have been diagnosed by them. I am 62, was diagnosed earlier this year, tested positive for the Jac2 mutation, am taking the Hydroxy to lower the platelets, and it is working! I am high risk, with other health issues, age etc., so the Hydroxy is most likely correct for me. Unfortunately, my Hematologist / Oncologist is a good chemist, but not very communicative. Most of what I have learned, has been online, and have saved several links that I would be happy to forward to you in an email (if I could figure out how to do that here). If you are not familiar with it, there is a doc (Ruben Mesa) the Mayo Clinic that has a utube presentation on ET. There is also something else interesting going on in regards to some Free (if you are already diagnosed with ET) DNA testing (be sure to consider the privacy issues) of which Dr. Mesa recently went on the board. Will send you the link if you are interested. Low iron is a challenge for me, and have infusions pretty regularly. The low iron that also causes major fatigue seems to be somewhat linked to the ET in my case. If you have some specific questions or want me to send you the links aforementioned, please email me.

I would really be interested if you could send me any links or info that you have found. I'm in the UK and keen to find out more about ET many thanks

Thank you, Lynnevb, I appreciate your response and especially, especially the Mayo Clinic protocol for treating ET. Unfortunately, the hematologist I have seen is relatively young and new at her job, and I think she was playing it safe when she wanted me to go on Hydrea immediately, even though my platelets were at 525. I think we each must consider where we are in life and what we want out of life before we make these difficult decisions. Again, because of my age (81 at time of diagnosis), I declined and have remained on the baby aspirin for the last 2-1/2 years.
Wishing you the best.

I would really be interested if you could send me any links or info that you have found. I'm in the UK and keen to find out more about ET many thanks