Hydroxyurea and Sun Exposure

@jodyjazz Well, I like to think I'm working smarter, rather than harder. It's pretty easy to find information these days. In fact, I'm apalled that most people don't seem to know they have access to the world's largest encyclopedia right at their fingertips.

@jodyjazz By the way, yes, I know what you mean about not being able to have the things we love. In my case, it's my favorite cheese, cheddar. When I read that cheddar is uniquely lactose-free because of the aging process needed to make the cheese, I thought "Alright! I can eat all the cheddar I want to!" Umm....not exactly. Along with pink salmon and tuna, it causes my platelet count to rise.

Hi Gary,
I cannot find anywhere that eating salmon raises platelets, I believe you when you say that is your experience, but I can not find on reliable site that says it does. I live for cheese, all kinds!!

@jodyjazz I haven't found any such thing, either, Jody. I've experienced it directly for myself. When I ate the cheese, the salmon and the tuna, my platelet count shot up to 495,000. A month after quitting the cheese, salmon and tuna, my platelet count was back in the 300,000's. That's laboratory data, not someone else's opinion.

I too am a sun worshiper and live for summer, which is way too short where I live. I was dx with Jak2ET last August and then breast cancer in September…double whammy! I underwent active bc treatment which included radiation on my left breast. That alone causes extreme sun sensitivity apparently to the entire left side and back from collarbone to waist. I was told sunscreen every hour with rash guard clothing anytime I was in the sun. I learned of a sunscreen called blue lizard and it has been amazing for me. I put that stuff on with no rash guard and have even gotten a tan with it. I also take anagrelide and it causes sensitivity like HU. So far so good. Good luck and I’m jealous lol🌴

@garyr443
Well I am happy for you that you know what to avoid. Was this also while taking the HU or with out?

With the HU.

@jodyjazz I haven't stopped using the HU yet. That will be on Saturday (June 6). On Sunday the 7th, I'll begin using the cranberry juice. So, nothing on Saturday, in order to give my body enough time to be without the HU and the Lisinopril, so there isn't any overlap with my medications and the cranberry juice.

@garyr443 That's certainly sounds like at least a correlation in your case. However, it may not be the cause of the spike.

I have never found a correlation in my own platelet spikes from stress, coffee, certain food, how much I exercise, or whether I was failing to keep smilin', all of which I've heard suggested by others over the years. I tried keeping a journal to try to spot patterns. That was very helpful in identifying things that made me feel worse or better energy-wise, but those things didn't affect my platelet counts.

Rather than disbelieve others, however, my conclusion is that ET acts different in every person. And, as the disease slooowwwwwly progresses and as we age, effects of ET and meds change. Saw that with Dad until he died with ET and of COPD at age 82.

One line of research yet to be meaningfully pursued is the typical trajectory of ET in long-term patients who are fairly well controlled with HU, and how ET interacts with pre-existing conditions. Why, for instance, do some people progress to MF or leukemia and others don't, all things apparently equal? And why does progression occur at such different rates?

@jodyjazz By the way, I came up with a concept I'm calling "low dose food." I have used this on holidays and other occasions in which I want to socialize with my neighbors in the building I live in. So,if there is a potluck dinner or a Cinco de Mayo lunch or something like that, I'll participate for that one meal, knowing it won't affect me because I'll be returning to my paleo diet with my very next meal. So, with that strategy in mind, I might try eating a single meal in which I eat some pink salmon or tuna and possibly some cheddar cheese. By returning to my usual paleo diet with my next meal, I've only received a "low dose" of the salmon, tuna and/or cheese. Enough to enjoy those flavors and to get some of their nutritional benefits, but not enough to raise my platelet count because it may be a month or more before I ever do it again. When I discovered the salmon, tuna and cheddar cheese were raising my platelet count, I had been eating three meals a day of either salmon or tuna, with cheddar cheese, as well. I was eating these foods all the time for a month or more by the time my next CB Diff test revealed what they were doing to my platelet count.