Pegasys-sounds the best so far?

[Monkey57]

Is Pegasys so far the best for ET and cure the disease as I read many post saying that for some people, the treatment can be stopped after plate counts going to normal?

[Charlieapple2018]

I started on the drug recently. From what I’ve read ET can’t be cured, we will live with it for the rest of our lives because of the acquired mutation we have. Interferon can put us into molecular remission if managed well and if we are lucky enough to react to it. Only time will tell. It seems if you platelets are in the normal range you would only need to take a maintenance dose of Interferon less often than you do now. Good luck.

[CommonDaisy in reply to Charlieapple2018]

Can you please explain what is molecular remission? I keep reading this mentioned 😊

[Charlieapple2018 in reply to CommonDaisy]

I’m only regurgitating what I’ve read, but it seems to be when your bloods are within normal levels and you are asymptomatic for ET, which would be nice.

[Jocko]

Hi Monkey,

I would bank on going into remission. I have been on Peg for 18mths and so far it's going well. My expectations are hopeful that it continues as is. It's important to be positive but also to be realistic. If there was a cure we'd all be on it.

Best of luck

Jocko

[Paul123456]

Haematological remission is bloods within normal range and no venesections if PV

Molecular remission is reducing Allele Burden (the % of mutant JAK2) to close to zero. A 50% reduction is a molecular response.

The Allele Burden is a blunt instrument but a major reduction does appear to correlate with slowing progression and even improving bone marrow fibrosity.

Some Hems believe we should start taking Interferon/Pegasys upon diagnosis since the earlier you try to slow progression the greater the chance you can halt progression since still early stage.

Only a subset of people get a good molecular response to Pegasys. My view is that if you can get Pegasys, then try it and hope you are in this group and don’t get any side effects. I’ve had no side effects and think it great. Started 45mcg and now 110 mcg.

Ideally start early when your bloods only slightly high and you just need to take low dose.

[CommonDaisy in reply to Paul123456]

Ah okay, this explains a lot. Thanks Paul.

One other question if you may know..

If molecular remission is reducing the Allel burden of a mutant gene like jak2, would that mean for those of us that are triple negative molecular remission is less likely? Because there’s no mutations to act upon 🤔

[Paul123456 in reply to CommonDaisy]

I think it’s a lot more complicated. Reducing AB is a general marker for possibly slowing progression/improving marrow but there is no firm correlation. Our Hems will advise that reducing AB by itself is of limited significance Jakafi reduces AB.

My understanding is that Interferons are the only drug that might slow progression for a subset of users and to get this result, you are likely to also see a reduction in your AB as a marker than INF working.

[Monkey57 in reply to Paul123456]

Sounds a chance to cure with Pegasys!!!!

Reduce to zero mutation. Why this is not properly use.

[BloodZero]

As far as im aware ET cannot be cured. I decided not to go with Pegasy because im prone to depression and Pegasy has been know to exasperate it.

I've been on Hydroxy for a few weeks my platelets are coming down.

[Monkey57 in reply to BloodZero]

Do u mind advise your platelet count and how old are you?

[BloodZero]

No problem. At present i am 45. For about 10 year my platelets averaged between 1200- 1400 and i only took Apirin.

The only reason im starting treatment is because there is evidence that my internal organs are suffering from the high platelets. Otherwise i was happy just to continue on aspirin.

After the first month my platelets came down to 800. Dr increased dosage and i get a blood test in a couple of weeks to see what its doing.

My fatigue has lessened already. Not completely, but there is a definite difference in my energy and endurance levels.

[Monkey57 in reply to BloodZero]

I read too many article on the serious side effect of hydroxyl and I am very concerned to use hydroxyl. Do you think it is a valid concern?

[BloodZero]

I do think its a valid concern. I was concerned too. And held off for many years.

Evey(body) is different though. I dont experience anything negative from Hydroxy as yet. And i just thought ill give them a go and if i dont like them ill consider other options.

However, My goal is not necessarily a long life, but a good one. So if a medication MAY give me Leukaemia in 40 years but during those 40 years i can get a lot more done. Then i will take the medication.

Besides, my haemo said that if this medication doesnt work out i will have to go on something else anyway. So im trying not to get too attached to one idea. She says the concerns about Hydroxy have proved to be unfounded. Not sure i agree, but im still willing to take them.

Unfortunately, treatment of our condition is a relatively new area. So there is not alot of options available.

That being said, if i were not prone to depression i give Pegasy a try. The depression i had in the past that lasted for about 10 long years was worse than death.

I would suggest you try first the treatment you feel comfortable with. See how it goes. Have a few blood test after. See how you feel. Take it from there.

All the best.