ET - medications not working out: Hello - just... - MPN Voice

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ET - medications not working out

intothewoods
intothewoods

Hello - just wondering about ET triple negative...

What happens when hydroxy and Pegasus aren’t really working out? Both drugs have required such high doses to bring platelets even close to normal range that other counts have tanked and become worryingly low...

Anagrelide is out due to previous heart attack...

No idea what else can be used so wondering if anyone was in the same boat!

13 Replies
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What dose are you taking of each and for how long? Sometimes it can take a few months to stabilize.

intothewoods
intothewoods in reply to fee13

Peg is 180 weekly and it’s been about 7 months, hydroxy was about 2g a day I think. That was for 10 months. Both have done the same thing - had very little impact and then all at once the counts all dropped super low and never stabilised.

Sorry - should add, it’s my partner not me. He’s 34.

Hi , how upsetting. I felt the same as you. You don’t say what your dose is at present.

It’s taken 4 years to find my correct dose.

Has your heamo said your meds aren’t working.?

intothewoods
intothewoods in reply to Wyebird

Sorry should have said - my partner, not me. The current dose is 135 of interferon as the neutrophils got too low and his liver function started to show dodgy results.

Sorry it took so long for you to find the correct dose - that must have been very hard. It’s reassuring to hear that it can take a long time and still work our though!

Wyebird
Wyebird in reply to intothewoods

Yes I’m being very closely monitored Because of it. I had a blood test about 5 weeks ago and am having another next week. I’m with a brilliant heamo too, so try and relax.

intothewoods
intothewoods in reply to Wyebird

Thank you!

Wyebird
Wyebird in reply to intothewoods

So glad my experience gives you hope and reassurance xxx

There are other medication options (e.g. busulfan). However, perhaps there is a different question to ask. Why is "normalizing" the platelet levels the treatment goal? Has he had any incidents of thrombosis or hemorrhage? Was the heart attack due to a clot? Is the current treatment provider a MPN Specialist or just a regular hematologist?

There are other approaches to how providers think about treatment for ET. It is about minimizing risks and managing symptoms based on his unique MPN profile. Some docs see no value in "sanitizing" blood cell numbers. All docs would agree that reducing risk is the goal, but they do not all agree on how to go about this. One size does not fit all MPNs.

Suggest seeking a second opinion from a MPN Specialist if he has not aleady done so. Here is a list of providers mpnforum.com/list-hem./ .

Here is a very informative presentation by one of the leading MPN experts on ET. Dr. Spvak was my consultant prior to his retirement. Note: while he is one of the "giants" in the MPN world - not everyone agrees with his views.

youtube.com/watch?v=hbVr9u3...

Given that he is on hydroxyurea, I hope you were both advised about protecting you as his partner from exposure to the toxic effects. There are some specific precautions to take.

I hope this helps. All the best to both of you.

Thank you for this. I will give it a watch. Yes the heart attack was from a clot, left I medicated his platelets got to 2.7m so the closer to normal we can get the better given the history.

Our consultant is great and regularly meets with the team at Guys so I know we’re in good hands. Just hope we can get something that balances things out.

He’s on interferon now and has been for several months so less risk to me.

That certainly makes sense. The interferon does take a while for full effect as I understand it. Is he using Pegasys or Ropeg? Whichever it is, hopefully the proper dose will be found. Glad to hear you have a food care team. Not everyone is so fortunate. I am likewise blessed to have a terrific group of docs. Many "ologists" in my life these days.

All the best to both of you

thank you!

Wyebird
Wyebird in reply to hunter5582

Just watched the MPN link . Found it really really interesting . Thank you

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