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

Hi @patty1962 Welcome to Connect. Thank you for joining in and sharing your involvement with the JNJ-88549968 Trial for ET/myelofibrosis. How long ago were you diagnosed with ET/MF? Can you share more information about how you're doing on the trial drugs? Has there been any changes in your conditions? Do you have both ET and MF?

hello
i have et with primary myelo fibrosis with the CALR gene . can you share how you got into the trial. i am 59 years old diagnosed in february 2026. not a candidate for BMT right now . considered low risk . i would like to ge considered for the trial. please let me know . thank you

I've been treated with Hydroxyurea for 12 years, so far, and I seem to tolerate it well, according to my hematologist, but it does have one concerning side effect and that is its tendency to destroy some of my red blood cells, causing anemia. Thus, I am also taking Vitamin B12 and folic acid (both of which produce red blood cells) to counteract this. I have recently learned that unsweetened cranberry juice, taken at the rate of one eight ounce glass per day, can be a substitute for hydroxyurea's platelet control, while avoiding hydroxyurea's red cell damaging side effect. Thus, with the cranberry juice, I may be able to keep my platelet count in the normal range (below 400,000) and this will enable my red cell count to be normal again for the first time in 12 years. Just yesterday, I discussed this with my hematologist and he has agreed that this may work for me. So, we're waiting for my platelet count to settle down first (after rising, due to exchanging ground beef for pink salmon and tuna, a couple of months ago, which caused a spike in platelet count). I eliminated the salmon and tuna and my platelet count has become normal again. I also went back to the ground beef which I've been eating since 2007 for my paleo diet, which eliminated Type 2 Diabetes by 2008. Anyway, so my hematologist agrees that the cranberry juice may work as a hydroxyurea substitute with no side effects, since it is not a pharmaceutical drug. It's just food. So, I'll be starting a one month trial period, between my monthly blood tests, and by the next test, we'll know what the effects are.

@drbart86 My name is Patty and I am currently in this phase 1 clinical trial at the University of Penn Hospital. If you would like to ask any questions, let me know.

@tmth I would google Clincial trials and use the government site. I would also ask your MPN specialist if they’re aware of any trials that you might be eligible for. I hope this helps. Feel free to reach out with any more questions. God Bless

@garyr443 This is very interesting to me. I did not know that food can control your platelets. Where can I read more about this? I have been in a terminal with my platelets and Being anemic. My Oncologist just took me off of hydroxyurea because of being anemic and my platelets going up on Hydroxyurea. He put me on anagrilide and four months later, my playlist skyrocket in 967. He has put me back on hydroxyurea, 1500 MG a day. I would love any information you have Or website to go to, to read more about food and platelets. Thank you so much and good luck with your trial

I have had my platelet count rise after eating foods recommened by doctors and nutritionists for the general population, especially dairy foods and fatty fish such as pink salmon and tuna. When I discontinued these foods, my platelet count then dropped back into the normal range, below 400,000. So, there is a definite connection between food and platelet count, even while taking Hydroxyurea for ET. I had read and bookmarked several sites on which I found credible information on lowering platelet count with cranberry juice, including a peer-reviewed study of the subject that was published on the National Library of Medicine. I have been looking for it, but now my bookmarks are missing. I'm not sure what happened. But, if you do some searching, you should be able to find what I did: information on using cranberry juice to lower platelet count. Unfortunately, when searching for such information, you may see information written for people with the reverse condition: essential thrombocytopenia, i.e, low platelet count. Finding anything helpful to people with ET, especially dietary advice, is made difficult by this, but not impossible. If you read these articles intended for people with thrombocytopenia just do the reverse of what they recommend, as these people fear anything that lowers platelet count and they believe they are "maintaining a healthy platelet count" by raising their platelet count. Sorry I can't find the information I had bookmarked. I don't know what is happening.

@loribmt Hello Lori!
I’m so happy to have read your story! You made it! What a journey it has been for you!! I’m actually in the hospital waiting for discharge from my 2nd step up dose of the clinical trial for the investigational drug JNJ88549968. It doesn’t allow me to attach a pic or document to make my life easier and not have to type it out unless it’s just my technical skills that are lacking 🤔. Am I allowed to send attachments here?

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?

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?