General level of blood platerets seen as " normal"/acceptable/bearable in here.

[yarrowleaf]

I have been reading lost of posts, but have not reacted on many, maybe because the more you learn, the less you feel that you know

I have ET Jak 2(maybe Negative)and get Pegasys 65ml once a fortnight.

But I have 1 cardinal question :: At what blood platelet level are you different ET people in here existing on ?? ???

My doctor will have me down to 260, but all the years I have lingered between 450 and 550. I know there are other vaccines somewhere out in the horizon and I would prefer a better alternative that the ones I have been offered.

All the best-- and thanks in advance !

Yarrowleaf

[Aneliv9]

Hello, i can't answer your question, i am like you with platelets between 400-530 . I just wanted to ask you what doctor told you about interferon and started your treatment? Does he think interferon could modify ET? I want to take it to if there is a possibility

[yarrowleaf in reply to Aneliv9]

Morning Aneliv9!!

I was diagnosed on the hospital in Aalborg, DK . One of the head physicians on their cancer unit told me (after a bone marrow test) that it was ET JAK2 . I had Interferon immediately, first once a week later once every third week and later again once every fortnight.

Surely Peginterferon can modify the number of blood platelets, but a healing is not yet (if ever) in sight. Our cancers are not curable. Not in any way.

As doctors know very little about it, generally and because we can have medics which can keep us alive, there is not the enthusiasm about it as there is about the other sorts of cancer.

Let us see what the future brings but surely you can get a positive kick out of Peginterferon, so surely you should jump it, if allowed !!!

Have a nice day.

Yarrowleaf

[cmc_ufl in reply to yarrowleaf]

Interferon, PEGylated or not, has been shown to do more than just simply reduce platelet levels. Studies have shown that is seems to preferentially target hematopoietic cells with the MPN mutation, which lowers and inhibits the allele burden. Some patients have even gone into remission (no detectable mutation) after being on interferon.

I would also say there is indeed a lot of enthusiasm and research being done on MPNs. It is a very active field of research with hundreds of clinical trials ongoing right now.

[yarrowleaf in reply to cmc_ufl]

Yes !!! It is exciting and I would wish the info would flow freer here in little DK

[cmc_ufl in reply to yarrowleaf]

Here is a good study to reference for the benefit of interferon for MPN patients:

pubmed.ncbi.nlm.nih.gov/336...

[yarrowleaf in reply to cmc_ufl]

Thanks a lot cmc_ufl. I'll dig through that !! Have a nice weekend !!!

yarrowleaf

[cmc_ufl]

I do not yet know if I have ET (currently still in diagnosis), but my platelets have been between 430 and 450 for 10 years. I am negative for all 3 driver mutations, meaning I am possibly triple-negative ET.

The normal range varies by lab/area. In the US, the most common normal range is 150-450 or 150-400. Since my platelets are technically below or around 450, they have gone unnoticed until now, but had I gone to another physician, they might have been picked up as abnormal (my new doctor uses 350 as the high range).

[yarrowleaf in reply to cmc_ufl]

Thanks for your answer cmc_ufl !!!

I asked because there is a pressure on me to change medics, but as I am photosensitive, it would be very dangerous for me. There are now medics on their way, also for ET patients, so I hope I can be allowed to wait.

Have a nice day.

Yarrowleaf

[DoubleF79]

Hi. My platelets are at just under 1600 at the moment after a year of them slowly creeping up. I’m CALR, age 41 on 135mg Pegasus injection every week increased from lower, fortnightly dose.

I don’t think you can compare levels as my haematologist said that age plays a big part so a 65 y/o with lower platelets is at just as much risk as a younger person with higher levels.

[yarrowleaf in reply to DoubleF79]

Hi and thanks. Yes I know, I just wanted to see "where" others are lingering and what is accepted.

We are all individual, too many different facts to be squeezed into boxes

Greetings Yarrowleaf

[AndyT]

My platelets, under control with Pegasys, range between about 280 and 320.

My haematologist prefers to keep them about there, rather than closer to the high end of normal at about 400, as they are apparently still abnormal and may clot more easily than normal platelets...

[yarrowleaf in reply to AndyT]

Thanks. These are almost the same numbers as up here. I cannot get below 450, though.Have a nice weekend.

[IrishSarah]

Hi @yarrowleaf 🙂

My platelets have ranged from 550-650 since ET diagnosis 10 months ago. 150-450 is “normal” range here in Ireland.

Started on Pegasys 3 weeks ago so fingers crossed they’ll come down soon 🤞🏻