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Anyone else with ET have mutation in MPL gene?

Posted by kapow @kapow, Jan 30 6:38am

I have been following Blood Cancers for a while now, and have yet to see anyone post MPL gene mutation. I am 69 yo female and have been taking Hydroxyurea (500 mg 5 days a week 1000 mg on the weekend) and Aspirin (81 mg) since diagnosed with ET last June. Recently I have been having headaches almost daily, but since this is relatively new (past 2 weeks or so) I am wondering if this could be the drug or is it the disease? And I wonder if different gene mutations react differently to the drugs. My platelets started at around 900 but are still above normal at about 500.

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debhammel | @debhammel | Jan 30 7:10am

Headaches are a side effect of HU and are also a symptom of high platelets. But since your platelets have decreased and the headaches are new, I'd be inclined to think the headaches are side effects. Best to discuss it with your doctor.

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janemc | @janemc | Jan 31 10:50am

Hello, kapow! Congratulations on getting your platelets down!

I too am a 69 year-old female with the MPL mutation. There aren't many of us with this version of ET, so unfortunately we have even less research on symptoms, efficacy of treatment, etc. to help us.

They say misery loves company, so I'll share that I have a headache almost all the time. Using a lidocaine spray on the back of my neck helps some. I've been assured that using lidocaine (which works through the skin) doesn't interfere with the low-dose aspirin I take every morning.

Debhammel is right: it's important to tell your doctor about your headaches since this is a new problem.

You need guidance on what you can safely do to relieve your headaches.

Glad you've found this forum.

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1 reply
jacquelineh | @jacquelineh | Jan 31 11:59am

I’m female, 63, with MPL mutation. My platelets were 1073 in February 2022, now 453. Pretty similar to you.
I’ve been on low dose aspirin and Hydroxy 500/1000 alternate days since Feb.
Worst side effects have been headaches and brain fog/chemo brain … very difficult to live with.
My understanding has been that MPL is the most rare but also the least concerning of the three mutations and that JAK2 is the really problematic one.
I’m in NZ and have been badly served by our public health system with our shortage of doctors so I’m intending to get a referral to a specialist now.

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1 reply
kapow | @kapow | Jan 31 12:35pm
In reply to @jacquelineh "I’m female, 63, with MPL mutation. My platelets were 1073 in February 2022, now 453. Pretty..." + (show)
@jacquelineh

I’m female, 63, with MPL mutation. My platelets were 1073 in February 2022, now 453. Pretty similar to you.
I’ve been on low dose aspirin and Hydroxy 500/1000 alternate days since Feb.
Worst side effects have been headaches and brain fog/chemo brain … very difficult to live with.
My understanding has been that MPL is the most rare but also the least concerning of the three mutations and that JAK2 is the really problematic one.
I’m in NZ and have been badly served by our public health system with our shortage of doctors so I’m intending to get a referral to a specialist now.

Jump to this post

Thank you for this. I didn't realize that MPL was the least concerning, but that is reassuring.
And the brain fog/chemo brain you talk about....I wonder if that is maybe what I have too? I will be talking and in the middle of a sentence I can't find a word so have to reorganize my thoughts and work around the misplaced word. Or someone helps me with the missing word. Or I just pause for longger mis-sentence until the word magically appears. This happens frequently, and most of my frends tell me that it happens to them too, but I swear it seems much more frequent to me than to others. Is this sort of thing reflective of Chemo brain?

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1 reply
kapow | @kapow | Jan 31 12:47pm
In reply to @janemc "Hello, kapow! Congratulations on getting your platelets down! I too am a 69 year-old female with..." + (show)
@janemc

Hello, kapow! Congratulations on getting your platelets down!

I too am a 69 year-old female with the MPL mutation. There aren't many of us with this version of ET, so unfortunately we have even less research on symptoms, efficacy of treatment, etc. to help us.

They say misery loves company, so I'll share that I have a headache almost all the time. Using a lidocaine spray on the back of my neck helps some. I've been assured that using lidocaine (which works through the skin) doesn't interfere with the low-dose aspirin I take every morning.

Debhammel is right: it's important to tell your doctor about your headaches since this is a new problem.

You need guidance on what you can safely do to relieve your headaches.

Glad you've found this forum.

Jump to this post

Thank you...I will take your approach to resolving headaches under advisement. I will discuss with my doctor when next I see her (which is not until April)

But it is good to know there might be other options besides Tylenol, which I don't find very effective.

And you are right! It is good to know there ARE others with similar experiences.

REPLY
jacquelineh | @jacquelineh | Jan 31 1:06pm
In reply to @kapow "Thank you for this. I didn't realize that MPL was the least concerning, but that is..." + (show)
@kapow

Thank you for this. I didn't realize that MPL was the least concerning, but that is reassuring.
And the brain fog/chemo brain you talk about....I wonder if that is maybe what I have too? I will be talking and in the middle of a sentence I can't find a word so have to reorganize my thoughts and work around the misplaced word. Or someone helps me with the missing word. Or I just pause for longger mis-sentence until the word magically appears. This happens frequently, and most of my frends tell me that it happens to them too, but I swear it seems much more frequent to me than to others. Is this sort of thing reflective of Chemo brain?

Jump to this post

As I said, this is only my understanding … from the internet … so others may have found different interpretations of these complex mutations.

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