Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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panamsandy | @panamsandy | Apr 19 1:44pm

In reply to @sarahgault "Hello, I was just diagnosed with ET JAK2 2 weeks ago today. My platelets last labs..." + (show)

@sarahgault

Hello,
I was just diagnosed with ET JAK2 2 weeks ago today. My platelets last labs were at 825. I started Hydroxyurea last Thursday ( 5 days ago) 500mg twice a day and so far no side effects. I am 63, work full time at a desk job and was quite shocked at this diagnosis. It was discovered thru routine blood panel after I hadn't had any labs done since 12/2023.

I was referred to hematologist and fully expected to just have some more tests ordered, probably no big deal. When he came in and said I had ET JAK2, something I never heard of, and that it was a type of chronic cancer and I'd need to take a chemo drug, I couldn't believe it. Especially since I was feeling mostly fine with just some dizziness and vision distortions the urgent care doc attributed to Vertigo. Wrapping my brain around it was overwhelming and difficult. What is this? How am I going to feel? How big or small a deal is this? What does it mean? What does my future look like? Can I still work? So many emotions and questions but under it all I knew I was lucky to have something manageable and not a terminal prognosis. I have friends and family I've watched battle for their very lives and endure chemo and radiation and shortened lives, so I feel very fortunate.

My best friend found this connection and am so glad to find a community where I can find answers to so many questions and read other's experiences with this same, I don't even know what to call it, a condition? a disease? the C word? A place to find and give support and share experiences and knowledge.

So far my occasional dizziness persists but I am at the beginning of this. Am really hoping the medication does it's thing and I can continue living and working without too much interference, that I am sure we are all hoping for.

I have 2 grown children and 5 grandchildren from age 1 to 18. I am divorced and live on my own so definitely need to keep working, retirement is not happening in the near future. I also have a wonderful group of loving supportive friends that are family (my framily).

So that's my story so far, looking forward to connecting here and seeking answers and wanting to know other's experiences.

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@sarahgault I was diagnosed exactly a year ago...platelets 490. I'm 76 now, have quarterly blood work; symptom free. Three months ago it was 550, next test is on Tuesday. I'm only on one baby aspirin. My hemotologist said people usually die with ET JAK2 not from it. Live your life, enjoy your grandchildren...keep track of your platelet level and get quarterly blood tests. Educate yourself. I wish you well.

birgitr | @birgitr | Apr 22 5:26am

In reply to @kat260 "@birgitr Will do." + (show)

@kat260 I am just back from my normal Onkologist appointment and actually he prescribed Pegasys. We are gonna start on Friday this week. He thinks the insurance will cover the costs 😅. I am gonna keep you up in the loop especially about the harsh sideeffects . Additionally I will stop HU.

kat260 | @kat260 | Apr 22 7:38am

In reply to @birgitr "@kat260 I am just back from my normal Onkologist appointment and actually he prescribed Pegasys. We..." + (show)

@birgitr Oh, that's great news. I have fingers crossed for you to have no or minimal side affects 🙂 Good luck!

1995victoria | @1995victoria | Apr 23 7:06am

just curious- why were you switched from HU to Pegasys?

birgitr | @birgitr | Apr 23 7:19am

In reply to @1995victoria "just curious- why were you switched from HU to Pegasys?" + (show)

@1995victoria My hope is that the drug will reduce the percentage of the vaf, so that it is less likely that the desease will progress into a more severe myelofibrose . HU can successfully reduce the platelets however could not influence the bone marrow itself.

1995victoria | @1995victoria | Apr 23 8:49am

In reply to @birgitr "@1995victoria My hope is that the drug will reduce the percentage of the vaf, so that..." + (show)

@birgitr does pegasys kill off mutant generating cells?

birgitr | @birgitr | Apr 23 10:35am

In reply to @1995victoria "@birgitr does pegasys kill off mutant generating cells?" + (show)

@1995victoria oh sorry, because English isn’t my mother tongue I am not quite sure about the term generating cells. Maybe another participant can help out with response?

dewz13 | @dewz13 | Apr 23 5:28pm

How involved is your PCP in your condition/medication? I don’t mean diagnosing but do they acknowledge your condition? Notice changes in your blood labs? Recommend things like vaccines based on the fact that you have ET?
I was diagnosed in February.

birgitr | @birgitr | Apr 24 2:14am

In reply to @dewz13 "How involved is your PCP in your condition/medication? I don’t mean diagnosing but do they acknowledge..." + (show)

@dewz13 In
In my case my PCP knows nothing about this condition and honestly I am my own advocate in this journey.

eloise999 | @eloise999 | Apr 24 6:08am

In reply to @1995victoria "@birgitr does pegasys kill off mutant generating cells?" + (show)

@1995victoria you can read papers on the topic and get the nuances of the work yourself there is some evidence that some patients with JAK mutation may see a reduction in the mutant JAK allele with interferon treatment. Some people have reported significant reductions in their JAK mutant allele levels, others less so or none. There is less evidence, but some, that it could work on one of the other mutant alleles. It is an interesting treatment option. You should talk to your hematologist.

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