Connect
High Platelets
Good afternoon. I am new to this sight and am looking for some reassurance. I do not want to get ahead of myself. I am a relatively healthy 71-year-old woman. I was diagnosed two years ago with atrial fibrillation but that is well controlled with a beta blocker. Early in September 2022 I went to my PCP for an annual wellness visit and he ordered several panels of blood tests as I have not had bloodwork done in over two years. EVEYTHING came back well within normal ranges except for platelets which were 551. A repeated test 6 weeks later was not much better as platelet count was 530. Iron studies were ordered, and they are very normal. My PCP referred me to a hematologist who reviewed my charts. An initial appointment is scheduled for December 8. I have no symptoms of illness and feel very well. I am very active. On the one hand I think that if the doctors believed this is an urgent situation, I would be seeing someone sooner. On the other hand, there are shortages of health care workers even in the highly rated teaching hospital all my doctors are affiliated with so perhaps December 8 is really the first time anyone can see me. Has anyone in this group experienced similar conditions. What, if anything, should I be on the alert for in the next few weeks. Thanks for reading!!!
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I think everyone has different side effects while taking Hydroxyurea. I found myself very tired in the evenings and had some headache issues.
One important thing is to be sure you take in a minimum of 64 ounces of fluid daily to get rid of any toxic effects. Rest up whenever you can.
Good luck with your journey.
Eileen
-
Like -
Helpful -
Hug
3 ReactionsThank you so much.
Yes I am trying to gulp water. Hard at times.
The drowsiness bothers me. Used to be so active .
I have the headache a bit on the 7 th day.
In your experience,Do they ever reduce the hydroxy dosage or stop it for awhile?
Hi, Karen here.
I was diagnosed about a month ago with Essential Thrombocytosemia, the rate type. . My platelets were 700,000 and were gummy and dangerous for clots.
I have a JAK 2 and TET2 mutations.
I had Myeloid Panel done.
Any advice for me on how to manage? This is new to me and I have only told a handful of friends and family.
I am having my first follow up Dec 21 with my oncologist.
Do you worry about getting an infection or getting the flu from Someone. I cannot take a flu vaccine, they say.
Thank you for your information and I appreciate your time.
Karen
I
Hi Karen,
I am unfamiliar with TET2 mutation. I have ET JAK2. I live in the United States and understand it is a rare blood cancer. My hematologist encouraged me to get the latest Covid booster and the flu vaccine…I had both with no issues.
Make a list of questions for your oncologist appointment.
Eileen
I have 4 pages for him!
Thank you for your information.
Mtnlife,
I too had no symptoms of anything prior to a routine blood test. in March of 2017 when my primary care doctor saw my platelets at 425,000 she referred me to my local "Hematology Center." I refuse to call it the "Cancer Treatment Center." After the most detailed blood testing I ever had in my life, I was diagnosed with Polycythemia Vera with a JAK2 genetic mutation. Since then I take 500mg Hydroxyurea twice a day with one baby aspirin a day. I have no other symptoms other than getting tired in the late afternoon and sleeping more. I go to my gymnasium and do all activities I did before. I do not know anyone with my condition. I did not know how many people have this at all until I got on this Mayo message board. I read the entries of my "fellow people" with my condition and have learned many things. I suggest following this Blood Cancers and Disorders message board. I see a doctor once every 4 months but can read what other people are doing every day on this message board. I wish the best of luck to you,
James, 63 yrs young, and plan to live for a long, long time.
-
Like -
Helpful -
Hug
3 Reactionskto1452,
I have had Polycythemia Vera since 2018. My hematology doctor told me I will be on 500mg of Hydroxyurea 2x a day for the rest of my life or some kind of treatment. I plan on living until age 100 so that is a long time from now. I too get very tired in the late afternoons and evenings. I plan all my mentally demanding tasks in the early mornings. I believe going to my gymnasium 3x a week helps immensely. I have no other symptoms other than late afternoon, or early evening fatigue. I have no side effects from Hydro other than it takes a few minutes to stop my bleeding after a small cut.
I wish the best of luck to you,
James, 63ys young, living the good life in rural Kentucky
-
Like -
Helpful -
Hug
1 ReactionHi James,
What is your platelet count now with taking two HU 500 mg a day? Has your dose ever varied?
I love your attitude, Eileen
*/eileen1108,
My platelet count is in the 250,00 range. Depending on who you talk to the danger zone is above 450,000. My dose of 500mg HU twice a day has never changed. I have never needed a phlebotomy. My case is apparently very slight. I am still a PV only person. My PV has not migrated into one of the nasties. I firmly believe staying active is a key to mobility. I go to my gymnasium 3x a week and I am currently studying to be a paralegal to keep my mind alert. I am the chaplain for my local American Legion and am on the Honor Guard where we perform at veteran's funerals. I wish you all the best,
James, 63yrs young, living in the Heartland of America, Central Kentucky, known as God's Country
Thanks Eileen.
I have made 4 pages of questions off the bat to avoid calling the triage team.
I am really not sure how the mutations affect the disease but will find out!
K