Is anyone involved in clinical trials for ET, specifically for CALR?

In my official role as Debbie Downer, I want to say that -- at least as far as I know -- there is no scientific evidence that anything we eat or drink can change our platelet count.

To anyone considering trying supplements or special diets: Only do so with your oncologist's careful monitoring, as garyr443 is doing with his cranberry juice experiment.

With ET, our bone marrow churns out extra, abnormal platelets every single day, because (unless we're triple-negative) of a mutation in the proteins that control blood production.

How could eating or drinking something undo a molecular mutation?

Our mysterious, poorly-understood cancer makes us feel desperate sometimes, especially when we have other health issues too. Please: proceed with caution.

And please share what you learn and experience! That helps all of us. Who knows where the cure for ET will be found?

Hi @patty1962 I’m going to tag member @lisanell, who originally posted this discussion about the trial that you’re involved with! Reading some of her followup replies I think she’s waiting for confirmation of acceptance in another trial.

But wow, thank you for posting your information about being involved in this JNJ88549968 Trial drug at U of Penn Hospital! I’d love to read your story! You should be able to post a photo or file. There’s a link right that shows up right under the window when click on the blue reply button. There is a delay in being able to do that for new members but you should be past that period. And yes, you can post links to attachments as well!
How were you accepted? Did you or your doctor have to file the application or request to be included?
You mentioned being in the hospital for the 2nd step up dose. How long is your stay each time?

Hah, yes, m’dear. I did make through some pretty dramatic medical adventures! Thank you! ☺️ That’s why it’s so important to never give up hope and keep right on pushing forward! It never ceases to amaze me what our bodies can endure and overcome! I’m 7 years post all of that excitement and living my best 2nd life. So I truly wish you all the best with this journey!
How many step up doses will you receive? As in, how long does this trial last?

@janemc yes! And even when platelet counts are within normal limits, our bone marrow is still doing its thing, at risk for scarring and myelofibrosis.

Also, we are still at risk for blood clots even when platelet counts are within normal limits. Some more than others depending on which mutation is present.

@lisanell Which mutations are more likely to have blood clots? (I didn't know that some are more likely than others. I had one removed from my carotid artery 3 years ago and I am MPL mutation)

@kapow

Your vulnerability to blood clots depends on SO MANY factors.

Speaking very generally: Relative to those with the JAK2 driver, MPLs like you and me, as well as CALs and triple-negatives, are less prone to clots.

But, compared to everyone who doesn't have it, anyone with ET has an increased risk of clots.

Remember! Every time you take the meds prescribed by your doctor

-- you are saying NO THANK YOU to blood clots.

Some helpful background from Blood Cancer UK:

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When you have ET, your body starts making too many blood cells called platelets.

Platelets are blood cells that help your blood to clot. They stick together to stop you bleeding if you have a cut or a bruise.

Like most blood cells, platelets are made inside your bone marrow – the spongy material inside some of your bones. Large cells in your bone marrow called megakaryocytes produce platelets that are released into your bloodstream, ready to stop the bleeding if you are injured.

In ET, the megakaryocytes start to make too many platelets. That means your blood may clot too easily. This can cause a heart attack or stroke and a range of other symptoms.

Treatments for ET aim to manage these symptoms and lower your risk of developing blood clots.

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@lisanell Which mutations are more likely to have blood clots? (I didn't know that some are more likely than others. I had one removed from my carotid artery 3 years ago and I am MPL mutation)