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

Day 1 completed! (Last Tuesday)

Took my first dose of immunotherapy for my cancer in a phase 1 study. I must commend the great staff at UCHealth; all have been super caring and very attentive to my needs. Today was the first dose and multi-day hospital stay; this will continue for the next several weeks, and once a safe and efficacious dose is found, there will be several years to follow.

Also, to the great work that cancer organizations do to support cancer patients. For me, Blood Cancer United (LLS) has been a key part of my journey over the last 4 years, because of a conference, I made contact with a great specialist that was local (when you have a very rare disease, there are not that many specialists, and they are typically at strong research facilities). BCU has also led me to encounter others with my class of disease - the kind of support and understanding is truly indescribable. (Please support these organizations; even a few dollars can be super meaningful.)

And of course, the pharma companies that take the risk to develop efficacious compounds are heroic in many ways. For me, there are only 3-4 approved compounds to treat symptoms (not a cure, as that is not an option yet), and at least 2 of these have not worked for me. This trial may be the closest we can get, but there are still so many for whom hope is fleeting.

The predosing protocol is quite interesting, especially mainlining benedryl 🥹. It burns going is so they administer slowly - I was asleep before they were done! Great for a several hour sleep.

Start again on Mon evening for pretests, administration on Tues and (assuming all goes well) home Thurs.

@drbart86

THANK YOU, THANK YOU drbart86 for being part of this study!

You are a hero. If ever we move forward in understanding ET, it will be thanks to people like you.

You minimize the burden this is putting on your life . . . but we all know you're amazing!!!

Organizing your ticker tape parade right now . . . .

@janemc Thanks, but I'm not a hero, the people that support me , my family, the Docs, the nurses, all the hospital staff, the drug companies, the support organizations (BCU, MPNRF, etc), and people like you, and more importantly are those that go through these challenges alone - they are the real heroic ones. I can do this due to my location being close to the care center and having MPN specialists to rely on. Hopefully, this will help others; but it is a bit selfish as well - I really do not like my "C" friend and want it out of my life!!!

@garyr443

Gary, as you've shared, your platelet count is within the normal range.

So, even if the cranberry juice "works" for you, that may not be true for anyone else.

It's brave souls like drbart86, putting their lives on hold to participate in scientifically-based clinical trials, who will help advance understanding of blood cancers.

We'd all love to drink juice and "cure" our ET. I know you sincerely believe you're onto something. But for me, the desire to protect my cardiac system and prevent my bone marrow from progressing into leukemia keeps me taking those green and pink capsules.

@garyr443 - I have a history of UTI's going back to 2011 (and yes men don't get them that these often, but I do). I drink about a gallon of cranberry juice a week. Don't count in it helping ET. Even on increasing doses of HU and then Jakafi, my platelets still rose. Rarely, if ever, will a dietary solution solve a genetic mutation per se. I say this as a Ph.D. nutritionist that works extensively with functional supplement ingredients. Your diet is critical and can help control many conditions, but it is only part of the equation. Make sure you discuss all your ideas and options with your doc as there can often be drug/ingredient interactions that Dr Google does not know about (and even docs sometimes).

@garyr443 - I have a history of UTI's going back to 2011 (and yes men don't get them that these often, but I do). I drink about a gallon of cranberry juice a week. Don't count in it helping ET. Even on increasing doses of HU and then Jakafi, my platelets still rose. Rarely, if ever, will a dietary solution solve a genetic mutation per se. I say this as a Ph.D. nutritionist that works extensively with functional supplement ingredients. Your diet is critical and can help control many conditions, but it is only part of the equation. Make sure you discuss all your ideas and options with your doc as there can often be drug/ingredient interactions that Dr Google does not know about (and even docs sometimes).

@janemc My platelet count was in the normal range with the Hydroxyurea, before I started the cranberry juice. I won't know where it is with the cranberry juice until I'm tested again on July 3rd.

I never said this would work for others. It may not. I'm simply sharing what I'm doing. I don't expect anyone to follow my lead on this, but, on the other hand, if it works for me, it may work for others, as well. It will be their decision to try it.

As for cardiac health, that's another thing cranberry juice is noted for.

Hydroxyurea has only one function: to keep platelet count stable. It does nothing to the underlying CALR Exon 9 mutation (in my case) and I doubt it can keep one's bone marrow from progressing to leukemia, either. In fact, I have read, right here on Mayo Clinic Connect, that, despite the Hydroxyurea, people have progressed to leukemia.

@drbart86 Well, two things: first, we have different mutations, to start with. Secondly, you're drinking way too much cranberry juice. I drink 8 oz. per day, diluted 50/50 with water to reduce the natural sugar content. Actually, that's half an 8oz glass, topped off with water, so really I'm drinking 4 oz of juice. This has been enough to keep my bloodpressure normal and, based on my reading, I expect it will keep my platelet count normal, too. That's all I want. I will still have my mutation and my ET, of course. If anyone thought I was saying otherwise, they simply misread me.