High platelet count: What does this mean?

Hi @eam32 Hopefully I can help clear that up for you. In my understanding, Leukemia in Latin, means white blood. The hallmark of leukemia is the overproduction of white blood cells/blast cells. But those white blood cells are immature, non-functioning and defective.

So, if someone has leukemia, with that high white blood count, it doesn’t necessarily translate into a higher immune response. You can have a high white count, but have very few functioning cells depending on how many are actually mature and capable of fighting infection.

At some point the doctor will treat this when the WBC continues to increase as the leukemic cells in your bone marrow crowd out your good marrow and spew out non functioning blast cells crowding out the red blood cells in your blood. It will be time to treat your CLL to bring your blood back to a more favorable balance of healthy red/white cell ratio. Right now, even though the white blood count is high, apparently there’s enough healthy white blood cells to delay treatment. Are your Red blood counts good?

i have the same diagnosis...ET (CALR) and AVW. My platelets started at 2800 (now down to 1000). I now take 1500 mg of Hydrea daily but my wbc are now too low. Doctor playing with meds now. I'm 53 years old and weigh 105. HU definitely makes me tired and fatigued. How is your daughter doing now with all of it? Yes...I realize its been a while since your post. Thanks!

I am an active 82 yr old female. For 10 years I had an elevated platelet count between 500-700. My hemotologist took a “let’s monitor with no treatment”. Then my new hemotologist, after high platelets for 10 yrs, had tests done for the JAK 2 mutation and it was positive. About the same time I began to become short of breath and it became progressively worse. I had a CT scan with contrast of my lungs. I immediately ended up in the ER with both a significant allergic reaction to the dye and multiple pulmonary embolisms, one quite large. I was put on a heparin drip for 3 days and then transitioned to Xarelto. Other tests showed an enlarged right heart with both heart and lung hypertension.

Several weeks later my platelets were over 800 and my hemotologist put me on 500 mg of hydroxyurea daily. The platelet numbers came down to under 400 within several weeks and now, six months later, they are staying under in the 300s. I continue daily HU.

A recent radioactive tracer test showed evidence of small clots in both lungs. I have pulmonary hypertension and still get short of breath but nothing like with my original crisis. My right heart has returned to normal size. I remain on Xarelto and HU daily.

I wonder if there is something we are missing or if we are on the right track.

I was recently diagnosed with JAK-2 gene as well, but my hematologist was led to doing the diagnosis also because of high red blood cells, alongside the high platelets. That said, upon reading what happened to you and how your platelets are now at good level, it sounds like you’re on the right track and well monitored by your new hematologist.

A hematologist should follow IPSET guidelines for ET clot prevention: JAK2+ and over 60 = platelet reduction meds.

Since it has been determined that even small platelet elevation can cause clots in JAK2+ patients, I don't get the "wait and see" for anybody over 60 or with a history of clots.

I am told by folks in some of the MPN advocacy groups that many medical textbooks are out of date, and that docs get very little info about MPNs because they are rare. However, MPNs have been featured at ASH (American Society of Hematology) conferences in recent years, so better treatment info is gradually filtering down to clinicians.

I wish that assessing ET patients for overall clot risks besides elevated platelets (cholesterol levels, weight, diet, diabetes, tobacco use, alcohol consumption, family history, exercise levels, etc) were part of ET treatment.

But it's not.

Fortunately, you can get some of this holistic care if you talk to your GP. Mine has been very responsive to my concerns about overall circulatory health.

Wondering why Xarelto? I'm in 70s diagnosed in 2019, on HU plus baby aspirin. My platelets were high for 3 years before I was diagnosed. My platelets are now normal, and I'd rather be on rx, then have stroke or heart attack. btw I've ET Jak2

Bevjg has diagnosed blot clots in her lungs...xarelto is a blood thinner. Assuming the medical people are trying to reduce or destroy the clots which could be life threatening.

I intially had MDS but after a bone marrow biopsy, it was found I didn't have it anymore. Why? My doctor can't explain it either. Now she says I have Thrombocytoses. My platelets run from 500 to 700. I'm on Hydro and Angrelide. I get blood tests every 2 weeks. Two weeks ago my platelets were 330. Now, two weeks later, they are 550. Why? I'm am wondering about the machine that reads the blood. I have read that the machines can sometimes read something else and marks it as platelets. The meds make me feel awful. She claims she doesn't know what else to do for me. Does anyone out there have an alternative med you take? Everytime I see her (every 2 months) she tells me I could have a stroke or heart attack. I am aware of that but I wonder if she has consulted with any other physicians in her practice.

Has your GP suggested you see a hematologist perhaps?

I sincerely hope you make an appointment with an MPN specialist. Are you taking low dose aspirin or blood thinner?