Male 65 year old farmer with thrombocythemia

My understanding is that the meds we take to reduce the number of platelets also lowers the red and white blood cells. So my red and white cells are low as well since I am on Hydrea 1000 mg on 4 days of the week and 1500mg 3 days a week.

I have been on anagrelide for 14 years and last winter was told that my hemtocrit began to go down. I was feeling low energy. However, I had a healing in Arizona this spring that seems to have changed things. Two weeks after, my blood platelet count had gone down by 200 pts. and my hematocrit was good. I have another appmt. in October so will see if it is still holding. I have been feeling great! You give me hope that I can continue to live a long life! I will be 68 in a few days.

Interesting that a couple have said platelets under million Mayo prescribes aspirin. After 3 yrs on HU I'm having side effects (feet feeling like they are swollen and sensitive) plus blood counts dropping and platelet levels varying. I have had occasions where my levels went over a mill. I take Xarelto due to a covid vac Afib ablation. My hema has hinted I may have to change to another drug. 76, five hours weekly moderate exercise.

Hi. I am not a farmer, but I have had gardens up to 10,000 square feet.
I have three cancers: Vocal Chord (remission after radiation), prostate cancer (under control via medicine), and MDS/platelets.
I have had dropping platelet counts for three and a half years. For a while now, my platelet count seems to have stabilized between the high 40s and low 50s.This keeps me in the watch-and-wait stage.
However, my new team-based care folks, because of my low platelet count, have to deal with my Afib because of the conflict between treatment for Afib(blood thinners) and low counts (bleedouts).
So tomorrow, I will undergo the Watchmen procedure, which, if successful, will eventually eliminate the need for blood thinners. As long as my platelet count is stable, I will return to watch and wait.
For my general health, I am active, including gym workouts and weight control. I am 83 years old😀(retired military)🇺🇸
Best wishes to all.

Welcome to Connect, @barry4! First let me thank you for your service to our country. Which branch of the armed forces?

You’ve certainly had your share of medical excitement so it’s good to hear you’re doing well with your vocal cord and prostrate cancers.
Best wishes tomorrow on your surgery for Afib with the Watchmen. I’ve heard good things about it. It would be nice to no longer need blood thinners!
After reading your comments today I couldn’t help but think of the old Timex watch commercials with John Cameron Swayze….Takes a licking and keeps on ticking. 😅

Will you please let me know how your procedure went?

Thank you for the kind note. I served about 30 years (man and boy) in the Air Force. I suspect my years working on ICBMs may have contributed to the cancers.

From what I have read about Watchmen, it seems to be an effective mature process. I will be happy to share my results.

Yes, ditto on Watchman results. I am 70, looking at trans cath mitral valve repair due to congenital abnormality, and would like to know more about how your procedure went. Wishing you well. Sounds like a good alternative to blood thinners!

I just have garden-variety ET, but have a breast needle biopsy scheduled for Sept 6. If that is positive, it will gum up everything else. Getting so damn tired of bad news, and I can only do so many mental gyrations to "keep smiling and stay positive" Might have to take up a punching bag ...

Thank you to all who have commented on my remarks.
Here is how my Watchman procedure went yesterday.
My procedure didn't go anywhere! The process was supposed to go through the following steps
1. Pass an echocardiogram
2. Pass a CT scan
3. Schedule procedure time and date
4. Do procedure
a. Check to see if there are any blood clots
b.Provide for platelet transfusion if count is below 50
c. anesthesia
d. Insert catheter
e. complete implantation of cap
f. Patient recovery
In my case, I failed step 4a. I had three significant blood clots, which raised the risk of proceeding too high to continue. So I went from step 4a to 4f. The next step for me was to go back on my blood thinner (Eliquis), which was suspended for two days before the procedure. Then, go back to wait and see for two months and reschedule the Watchman procedure to resolve the original problem.
For those interested, you can watch the procedure on YouTube.
I still think The Watchman is a great advance over blood thinners especially if you have a situation like mine.
Best to all 😀

@barry4 Well, gosh, Barry, that didn’t go as planned, huh?! Thank you so much for your update about the Watchman procedure even though it was a no-go this time around.
It was very lucky to have found those 3 blood clots though, so you could get back on the Eliquis!
Was it thought that they developed in the 2 days you were off the medication before surgery?

Good morning Lori,
I don't know for sure when the blood clots formed. About three weeks ago, my hematologist wanted to cut my Eliquis dose because of my low platelet count. My blood thinner amount was cut in half. A week later, my cardiologist said I needed the total quantity and suggested the Watchman procedure to resolve the situation. So now I am back to wait and see for two months😀
I wish you all a good day as we trek through MDS. The sky is blue, and the sun is out where I live at about 8,000 feet ASL.