High Platelets

Posted by mtnlife @mtnlife, Nov 15, 2022

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!!!

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I was DX: CALR platelets rose to 915. Still taking .81 aspirin 1000 mg/day of Hydrea added the past 4 weeks blood work every 2 weeks. Platelets down to 685. I’m no longer nauseous, or headache still a little fatigued. Thankful treatment has begun

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Bone marrow felt like a quick bee sting for me. Over in 10 minutes. I would have gone back to work, but they gave me Ativan.

Bone marrow biopsy confirms diagnosis and measures any fibrosis in the bone marrow. Gives the doc an idea of your overall marrow health.

Some ET patients (24 percent or fewer?) progress to a more serious disease, myelofibrosis. As I understand it, interferon/Pegasys is the only treatment that researchers think MAY stop progression in some patients.

However, Peg is prohibitively expensive for a lot of people, and it seems to be less well tolerated by older patients. My doc said she would not prescribe it as a first-line drug for anybody over 60 because it causes acute depression.

But I hear from some older patients that they feel fine and that doctors are dosing at lower levels to alleviate side effects.

Worth discussing with your hemo?

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@nohrt4me

Bone marrow felt like a quick bee sting for me. Over in 10 minutes. I would have gone back to work, but they gave me Ativan.

Bone marrow biopsy confirms diagnosis and measures any fibrosis in the bone marrow. Gives the doc an idea of your overall marrow health.

Some ET patients (24 percent or fewer?) progress to a more serious disease, myelofibrosis. As I understand it, interferon/Pegasys is the only treatment that researchers think MAY stop progression in some patients.

However, Peg is prohibitively expensive for a lot of people, and it seems to be less well tolerated by older patients. My doc said she would not prescribe it as a first-line drug for anybody over 60 because it causes acute depression.

But I hear from some older patients that they feel fine and that doctors are dosing at lower levels to alleviate side effects.

Worth discussing with your hemo?

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Great post. I'm 67 and recently diagnosed with ET and Jak2 mutation. My Hemo Dr started me on weekly injections of Pegasys 1/4th vial. I went from 951 to 900 in one month. May need to increase my dose as they wanted to see more movement. Will wait to see next month's number. I seem to tolerate this dose so far ok. A little sleep disruption, but not as fatigued. Main hope is that it stop the progression. And yes, tier 5 medication...yikes $. Blessings to all on your recovery journey!

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@mortysdad

Great post. I'm 67 and recently diagnosed with ET and Jak2 mutation. My Hemo Dr started me on weekly injections of Pegasys 1/4th vial. I went from 951 to 900 in one month. May need to increase my dose as they wanted to see more movement. Will wait to see next month's number. I seem to tolerate this dose so far ok. A little sleep disruption, but not as fatigued. Main hope is that it stop the progression. And yes, tier 5 medication...yikes $. Blessings to all on your recovery journey!

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I hope you will continue to update us on your experience with Peg. I hear it takes longer to work, though people respond at different rates to all these meds.

It took HU over a year to move my platelets from 800 to 400s. I am very stable and satisfied with things at the moment, but all of the oral meds for ET can stop working at any time, so would be helpful to know how Peg affects older people over the long haul.

One of the fellows I talked to in the UK was moved from HU to Peg at age 75. Over there, they get it free from the NHS if HU stops working, but mental health screening is done before Peg is prescribed, and patients receive anti-depressants as needed to alleviate side effects.

Thank you for posting!

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Hello. I'm 36 yo female. I was diagnosed with ET as well about 1.5 years ago. Today my WBC had come down to 11.4 and platelet count is 773. My doctor started me on HYDROXYUREA 500 MG today. I do have a history of DVT's so I have to take baby aspirin everyday. My doctor doesn't understand what caused this disorder as it went unnoticed for many years through another health care provider.

I've never been on chemotherapy in my life until today. I have had 2 blood transfusion in 2016. From what I'm reading as I research this medication and more about ET is that there is no cure and I'll have this disorder the rest of my life and it typically happens to people aged 60 or older but can happen to younger people. Has anyone made any changes to their lifestyle/diet and seen a decrease in the platelet count? Any suggestions?

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@princessbutterfly1986

Hello. I'm 36 yo female. I was diagnosed with ET as well about 1.5 years ago. Today my WBC had come down to 11.4 and platelet count is 773. My doctor started me on HYDROXYUREA 500 MG today. I do have a history of DVT's so I have to take baby aspirin everyday. My doctor doesn't understand what caused this disorder as it went unnoticed for many years through another health care provider.

I've never been on chemotherapy in my life until today. I have had 2 blood transfusion in 2016. From what I'm reading as I research this medication and more about ET is that there is no cure and I'll have this disorder the rest of my life and it typically happens to people aged 60 or older but can happen to younger people. Has anyone made any changes to their lifestyle/diet and seen a decrease in the platelet count? Any suggestions?

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Younger people are turning up more frequently with MPNs, and research is giving this a lot of attention. Hopefully this will lead to better new therapies!

Eating heart healthy, maintaining a good weight, and getting regular exercise to maintain circulation is good for everybody, especially people with ET. Whatever can lower your overall clot risk is good.

But none of that will lower your platelets to normal levels. There are lots of scam artists out there willing to tell you otherwise to get your money.

Women in childbirth years are increasingly being prescribed Pegasys because it is safe to use while pregnant. HU is not. Maybe chat with your doc about this? It doesn't come up with us older ladies.

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@mortysdad

Great post. I'm 67 and recently diagnosed with ET and Jak2 mutation. My Hemo Dr started me on weekly injections of Pegasys 1/4th vial. I went from 951 to 900 in one month. May need to increase my dose as they wanted to see more movement. Will wait to see next month's number. I seem to tolerate this dose so far ok. A little sleep disruption, but not as fatigued. Main hope is that it stop the progression. And yes, tier 5 medication...yikes $. Blessings to all on your recovery journey!

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Most seem to start taking Hydroxyurea and low dose aspirin when first diagnosed with ET JAK2. This medication is inexpensive. What was your doctor’s reasoning?
Best wishes for your journey. Eileen

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@eileen11108

Most seem to start taking Hydroxyurea and low dose aspirin when first diagnosed with ET JAK2. This medication is inexpensive. What was your doctor’s reasoning?
Best wishes for your journey. Eileen

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My Dr discussed Hydro and Peg, but when I asked what she would do in my case, she said Peg because while Hydro absolutely brings down platelet levels, Peg has the additional benefit in some patients to prevent the ET from going into the more dangerous fibrotic mode of the disease. Of course no guarantees and many folks are on Hydro for life with no new progression. I did see that word mentioned a few times in my bone marrow biopsy (which my Dr said I do not have at this point) so maybe the fact that my platelet levels were rising so fast made me a better candidate for a more aggressive treatment. My levels went from 600 to 950 in four months. So after my first month on weekly Peg injections, I came down to 900...I'm taking that as a win as it stopped the creek from rising. We'll see next month!

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@dwlowrance

Thanks for your post. I am now 75 and found Essential Thrombocythemia as my first chronic disease. I began a battle with high platelet count about 5 years ago. My platelets from Essential Thrombocythemia were over 1.0 million without any drugs until my first 2 doses of the Moderna SARS2 vaccine and spike proteins in early 2021. The vaccine caused my platelet count to exceed 1.5 million and I noticed pressure in my brain. At that point, I began to follow the prescription of my Oncologist to take Hydroxyurea. The platelet count dropped to .4 million with 2 pills per day and caused my tongue to swell and become inflamed. My Oncologist adjusted the dosage to 9 pills per week and the platelet count was .6 million in my last blood test. I believe the long term effects of large doses of Hydroxyurea include fatal pancreas disease, so I am evaluating periodic cessation of the Hydroxyurea. The balancing game of the jungle of drugs and side effects never ends. This is my medical experience and I hope it helps you deal with an undefined fear of stroke used to coerce compliance with drug usage.

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I’ve had a high platelet count close to two years. They’re calling it Thrombocythemia they did some genetic tests yesterday and I haven’t had bone marrow done yet . I’ve started having problems from bleeding taking the aspirin . He said to stop the aspirin and we could take the platelets out with a machine that removes from your blood . My feet and hand turn all shades or red and burn like fire all the time or their cold as ice turning white or blue tingling . The haven’t felt well in very long time . The blood doctor thinks I have MPN or something like that . I am a smoker which is likely not helping this situation but I’m struggling to quit it’s a very strong addiction. I hope we will all be ok . This is very scary . Really it is . Looks like there’s no end to this will be an ongoing problem.

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@loribmt

Hi @mtnlife, It’s wonderful news that there’s no sign of CML or other blood cancers. So now it’s a matter of getting the bone marrow biopsy to examine the marrow cells. That’s the heart of the immune system and the home of blood manufacturing. It’s a beneficial test to check the health of the bone marrow.

@nohrt4me, @wa34937 @koryw208 all have ET with the CALR mutation. Essential Thrombocythemia is generally slow to develop so you might not need any treatment for some time.

It’s interesting you’ve been finding articles that suggest asymptomatic women wouldn’t require hydroxyurea regardless of age. I’m curious because of the possibility of blood clots with elevated platelets. Are they saying no treatment at all? Or just the hydroxy?

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Just the hydroxy. i am still waiting to learn what the next step will be. My appointment originally scheduled for December 29 was postponed until tomorrow as my doctor had the flu. Anxiety is really getting to me. I have bloodwork scheduled before the appointment. I can understand why a CBC would be ordered, but why a comprehensive metabolic panel and LDH test at a follow-up? Mu metabolic panel is pretty normal, but the ldh test I had las month was slightly elevated at 288. I am resigned to a diagnosis of essential thrombocythemia but scared that it may be more serious than that.

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