Stopped my treatment for ET: I have ET and been on... - MPN Voice

MPN Voice

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Stopped my treatment for ET

Jbut
Jbut

I have ET and been on interferon Alpha for 11 years changed recently to peg, after a month on peg my platelets went low so stopped treatment in July.Over the last 3months having bloods done every four weeks, my platelets have been around the 300, so been great.consultant phoned today after having my bloods done said they will just keep a check on my bloods.

27 Replies
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That is great news! Did they recheck your mutant allele burden to see if you are in molecular remission?

Jbut
Jbut in reply to hunter5582

I didnt ask wouldn't have a clue really what that ment, not that clued up on my condition, only basic knowledge, i Did jokingly say am i cured, but his reply was no.

hunter5582
hunter5582 in reply to Jbut

Molecular Remission = no detectable driver mutation (e.g. JAK2 burden = 0%)

Hematological Remission = blood cell values are normal, but driver mutation is still detectable

Neither is a cure. Both are way better than a stick in your eye. Some people can stay in remission for years. It is definitely good news.

Jbut
Jbut in reply to hunter5582

Thanks i am jak2 pos,i will ask next time i see consultant, i am pleased no medication, fingers crossed x

Aneliv9
Aneliv9 in reply to hunter5582

So while someone on remission,is there still chances of progression?

Manouche
Manouche in reply to Aneliv9

Haematological remission + molecular remission = no progression = functional cure

Aneliv9
Aneliv9 in reply to Manouche

Thank you. So with only molecular remission, progression is still possible? Thank you

hunter5582
hunter5582 in reply to Aneliv9

Remission is technically a temporary "cure." It may or may not last. While you are in full remission, the you are "functionally cured" for as long as the remission lasts. Understanding of this is emerging. Hopefully we will know more soon and can all seek this outcome. This is the potential big advantage to PEG-IFN and other immunotherapies. Oddly, not everyone agrees on the value of reduced mutant allele burden. I cannot understand how reduced/eliminated mutant allele burden would be regarded as anything but a good thing.

Manouche
Manouche in reply to Aneliv9

As far as I know, a complete molecular remission is always associated with an haematological remission, unless some other mutations are also driving the pathological hematopoiesis. Besides, molecular remission can’t be 100% ascertained with the current technology.

Great news! Long may it continue x

Wow! Great news🤗

That's great news! I got told that I'd be on my medication (hydroxy) for the rest of my life and they wouldn't ever stop them or give me a break from them so you must have a better consultant to have stopped them and monitor you closely like that :)

Jbut
Jbut in reply to LoveTheLlama

I was told the same many years ago before ET was classed as a blood cancer. Its only recently that i have a different consultant and seems more upto date.

ciye
ciye in reply to LoveTheLlama

I got told the same, my dentist won't see me for treatment.

I wanted to switch to interferon but covid being used a reason not to. Sometimes the NHS is great I am currently in hospital recovering from lung surgery care excellent can s speak to haematology.. no chance.

Dovme
Dovme in reply to ciye

Hope you have a speedy recovery

LoveTheLlama
LoveTheLlama in reply to ciye

hope you have a quick recovery

Mazcd
MazcdAdministrator

hi Jbut, what great news, really pleased for you. Maz

This is great news, Jbut. Thanks for informing us.

May I ask Q about that 11 y on Interferon A: How many dosage you were taking (injecting?) in a week and then on PEG-Interferon A? Ever been on Hydroxyurea pills or trying it to see tolerance/performance?

Thanks! Stay safe and enjoy your life.

Jbut
Jbut in reply to samiris

Hi yes i was interferon alpha for 11 years, 3x a week platelets stayed around the 200 , then had to change to peg interferon because hospital could not get hold of interferon alpha, injecting peg 1x a week i think was 10ml, platelets went down to a 100 so then stopped peg, at present there around 300, so just keeping a check, still on asprin. Its strange i feel more tired off the medication. When i was diagnosed over 11 years ago platelets were 800 , had 3x TIa and a bleed in the bowl. Am hoping i stay stable, no medication.

Jbut
Jbut in reply to samiris

Sorry forgot to let you know, didnt really have any side affects just thinning of hair, tiredness .

Windy51
Windy51 in reply to Jbut

Awesome news

Great news! So pleased for you.

Great news. Long may it continue!

VERY good! Can i just clarify something? Has ypyr doctor rule out that these low platelets counts are not sign of progression? (I don't believe it is! Just trying to understand and take courage!)

Jbut
Jbut in reply to Aneliv9

Doctor has said nothing, could it be, little worried now.

Aneliv9
Aneliv9 in reply to Jbut

I was afraid of scaring you with my question :-(

Worth asking your doctor thought.. please let us know and remember that the MOST possible is peg done it's job! That is what many papers nowdays find out! That it works but after many many years!!!

Great news 😊

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