Is Essential Thrombocythemia a blood disease or cancer?

@1pearl

My Medicare Advantage plan is one through my former employment and is a state plan. So far I've been satisfied with it, but I've not had any hospitalizations and I'm not on any expensive meds. I don't know much about the plans offered to individuals, other than they vary a LOT and also vary by location. The drug coverage probably varies a lot, too. The Medicare Supplement plans used to be standardized as to benefits but not price, but I don't know if they still are. (My husband was on one but he passed away in 2012.)

I wish I knew what plan to suggest but I don't have a clue. Perhaps there are resources available to provide guidance? That might be worth checking on.

Best wishes and prayers for you.

@vickieannb57
Thank you for your information. Honestly, I would like to have another opinion out of the Medicare Advantage Plan I chose and have not done that. My O/H thought I had ET in January 2025 with CALR1 mutation but she changed it to primary myelofibrosis in February 2025 after I requested a bone marrow biopsy she said I did not need. I think that is why she changed my diagnosis. I did not pay anything for it as no copay. Then she sent me for pelvic CT and that came back with no enlarged spleen. I did not pay anything for that either as no copay. She sent me to bone marrow transplant specialist and he said no transplant needed now and may never need one or at least not for a long time. I did not pay anything for that either as no copay. He said there is no age restriction for bone marrow transplant if one is fit and healthy so I should stay that way like I am now. Currently I do take daily low dose aspirin only as on labs my platelets are high, red cells normal, and white cells only slightly high. I have no symptoms. I do daily exercise and eat well and am good weight at 106 for my height of 5 foot 2.5 inches. If I truly have myelofibrosis and develop symptoms, I would need to take meds that are costly. I would receive astronomical bills from my Advantage Plan if I needed to take those meds I know. Since it is possible that I might need to take them in the future, I agree that it would be good idea for me to change from what I have. I am just not sure what to change to still! When I signed up for Medicare when I turned 65 last year, I was very healthy and still feel like I am but I do have high platelets. Thanks for listening.

@1pearl

My Medicare Advantage plan is one through my former employment and is a state plan. So far I've been satisfied with it, but I've not had any hospitalizations and I'm not on any expensive meds. I don't know much about the plans offered to individuals, other than they vary a LOT and also vary by location. The drug coverage probably varies a lot, too. The Medicare Supplement plans used to be standardized as to benefits but not price, but I don't know if they still are. (My husband was on one but he passed away in 2012.)

I wish I knew what plan to suggest but I don't have a clue. Perhaps there are resources available to provide guidance? That might be worth checking on.

Best wishes and prayers for you.

@cec2
Thank you for your reply. I was told by a friend from high school who sells Medicare plans that she thought SCAN Alta Advantage plan here was much better than Kaiser last year when we both turned Medicare age. That is what she went with. She suggested I get it and choose a primary doc who refers to UCSD so I could see a MPN specialist which sounds like a good idea. I have not heard back from her if it still is a good if that would be a good option for 2026.
I am just blessed to feel absolutely fine. I was only given my MPN diagnosis from going to a new insurance plan (Medicare Advantage) after not being happy with the insurance and hand specialist choices I had through my husband’s employer last year when they determined I had high platelets from routine lab work. I take daily low dose aspirin now. I was going for a second opinion on my enlarged non painful right right finger proximal phalangeal joint but nothing has gotten done by them on that and I know won’t as I have seen two of their hand specialist who really do not know what it is. I know open enrollment started on October 15 so I need to keep researching better options.
Have a blessed weekend.

Hi, @rosew1969 Welcome to Connect…I’m so happy to see you here! Your positivity is infectious with your reply to @ghen in another post!

Thank you sharing your experience with ET and the benefits you’re seeing from taking hydroxyurea. I know it can be disconcerting having to be on a drug classified as a chemotherapy. But these meds can be very valuable tools with helping us to remain active and an healthy when we have a medical underlying issue.

It sounds like you must have been experiencing some pretty serious symptoms that led you to the diagnosis of essential thrombocythemia (ET). If you don’t mind sharing, what type of symptoms were you noticing?

@loribmt

I read that the the MNPs were classified as cancer at some point because the definition of cancer includes uncontrolled cell growth and that at one point MNPs were not considered cancer but disorders. It was desired to get them classified as such in order to allow more research funding. Not sure if that is true but the cancer definition fits. WHO classified them as cancers in 2008.

I was diagnosed with ET with JAK2 mutation a little over a year ago and even my hematologist doesn't call it cancer, just a blood disorder. As a result, I don't think I have taken it as seriously as I should. I have been taking HU for almost a year without any side effects, so I feel pretty fortunate. I'm really glad to see all the discussion here about ET. The input from other patients is so valuable. I was really scared to start taking the HU and found a lot of information and encouraging words on this forum. My thanks to everyone who participates.

Do you have nail discoloration or skin? I have heard of HU dark streaks in nails, but 6 yrs on HU, and I haven't noticed that. Yet. Skin discoloration is one I haven't heard. I do have foot tingles, prickles, and burning, but hemo told me that's a circulation issue and do exercise for lower extremities. So I have an exercise bike. Helps to keep my feet moisturized, soak in cool water, put feet up. Your platelets seem good. Will doc reduce HU dose for you?