Essential thrombocythemia

Hi Lori. Becky had her first blood test today, 2 weeks after starting the hydroxyurea. We were disheartened to see that her platelet count went from 625 to 629. Not a huge increase but we were hoping it would go in the other direction. If Becky was on the correct dose of hydroxy, would 2 weeks be enough time to see a drop?
She has another test in 2 weeks then a trip to the oncologist to discuss.
On another note that may or may not be connected, she has had a swollen left leg for at least the last couple of years and just had a total knee replacement a few months ago and still has the swollen leg. The docs, (not her oncologist) but her TKR surgeon are doing ultrasounds on the leg to eliminate the possibility of blood clots and she is scheduled for an MRI. Not sure if this could have any connection to the ET.
Anyway, that's a long story.
Thanks for listening.
Steve (for Becky)

@1995victoria I had to look that up because that was new information for me…the possible link between malignant lymphoma and tattoos. It looks like they’re saying more study is recommended. So many possible pitfalls out there to increase risk it’s hard to keep track of it all.
https://pubmed.ncbi.nlm.nih.gov/38827888/

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?

It can take months to find the effective HU dose.

Adjusting the dose step by step requires some patience, but it's the best way to avoid side effects.

All good wishes to Becky!

Thank you Jane.

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.

Hi Steve & Becky. I’m a little late in reply and see that @janemc said exactly what I would have, that it can take months to find the effective HU dose. We’re all unique. So while a particular medication may be the correct treatment for a condition, we may not all react with predictable outcomes to a specific dose. I found that out through my own pharmaceutical history with the bone marrow transplant and chatting with fellow BMT patients. We were all pretty much on the same meds but many of us different dosages or different periods of time. Most patients are off their immuno suppressants in 3-6 months. It took my new cells 2.5 years to decide they’d tolerate me! LOL. Now we all play well together. But it just shows ‘one size does not fit all’ in a manner of speaking.

So stay the course. Since ET is generally slow to progress, Becky’s frequent blood work will pick up any changes along the way. Her doctor will help regulate her dosages to find that sweet spot. And if it’s not HU, then there are other options.

It’s not a bad idea to have the ultrasound of Becky’s leg to rule out involvement of a blood clot. Edema can be caused by a problem with how blood travels through the body but there can be other reasons as well.

I’m guessing Becky is feeling a little deflated or defeated right now with the past few months of not being at 100% of her game. It hits us when we think our body has let us down after ticking along just fine for years. Distraction and diversion are keys for climbing out of a funk like that. I hope she can find some normalcy daily, fill her days with positive activities & events to let her know this is a momentary glitch in her life. When the newness of the diagnosis wears off, she’ll learn that nothing has radically changed. She’ll get used to the meds and realize she can enjoy a full and happy life not worrying about ‘what if’ or waiting for the other shoe to drop. Every day is a gift and shouldn’t be spent worrying. Worrying does not take away tomorrow’s troubles. It takes away today’s peace. ☺️

Hi Lori. Thank you sooooo much for that heart felt reply. Becky and I read it together. Lots of good points. She and I are both doing fine...just looking for a time when her platelets start heading in the right direction. In regards to that, I was wondering, perhaps more than you can answer, but wondering if HU actually lowers platelets or just it just slow the production and the ones she currently have will die off eventually.
Also, I'll start sending messages in general and you can answer when and if you can. I don't want to have you feel you're committed to answering my questions because they are addressed to you.
With that said.....THANK YOU SO VERY MUCH,
Steve and Becky

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. 😉