Hydroxyurea and Sun Exposure

Posted by johnnychips @johnnychips, Apr 28 1:28pm

I recently started taking Hydroxyurea (for ET) with seemingly minimal side effects if any. However, I've been reading about having to avoid the sun rays when taking the drug because of potential photosensitivity, rashes, sunburn and even skin cancer. I love the sun and planning on a getaway to the Caribbean armed with SPF 30 sunscreen. How paranoid should I be in spending time in the sun?

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Profile picture for garyr443 @garyr443

@jodyjazz I guess you meant "disciplined?" I have not tested those foods without the HU, but I have considered doing so once I replace the HU with the cranberry juice. That way, I'll know whether the platelet increase was due solely to the change in diet or whether, for some reason, it was an interaction with those foods and the Hydroxyurea. This would dovetail nicely with my "low dose food" concept, also,in that, it will show whether or not I can tolerate single meals of salmon, tuna, cheddar cheese while still eating a paleo diet (which the salmon and tuna SHOULD be perfectly compatible with. The cheese, being dairy food, is not paleo, though, whether it contains lactose or not.
A paleolithic diet is one in which you eat meat, fruit and vegetables, all of which were consumed by our paleolithic ancestors. Farming and the introduction of grains and dairy into the human diet occurred during the Neolithic. Many of us, if not everyone living today, are descended from both Paleolithic hunter-gatherers and Neolithic farmers. Those who are descended mostly from Paleolithic hunter-gatherers probably don't have the gene that enables lactose tolerance. Those descended from Neolithic herdsmen who were mostly dairy farmers would definitely have the gene for lactose tolerance. The way to know which it is in your case is whether you can drink milk without any upset stomach. Prior to going to my dairy-free paleo diet, I used to drink milk at every meal and between meals, as well. I typically went through about two gallons of milk per week. So, I am definitely not lactose intolerant. Just the same, lactose is milk sugar and that would have been one of the reasons for type 2 diabetes.
I never had a treadmill, preferring actual walking, instead. In my forties, I was walking 6 miles a day every day. I worked out with weights for about a year before I switched to a Total Gym. I wore the first Total Gym out and replaced it with a new one, which I left behind when I moved to Seattle in 2009. These days, I use dumbells instead, combined with exercises using my body weight combined with a wall.

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@garyr443 I have a retired racing Greyhound and I walk her twice a day. But since it is her walk, she gets to stop and sniff as often as she like stimulating her own brain cells. The tread mill allows me to maintain heart rate ect. Funny I just normally eat meat, fruit and veggies, and did not know I was inadvertently following a diet. ;_0

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Profile picture for jodyjazz @jodyjazz

@garyr443 I have a retired racing Greyhound and I walk her twice a day. But since it is her walk, she gets to stop and sniff as often as she like stimulating her own brain cells. The tread mill allows me to maintain heart rate ect. Funny I just normally eat meat, fruit and veggies, and did not know I was inadvertently following a diet. ;_0

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@jodyjazz A walking friend! 🙂 So, you eat other foods besides the meat, fruit and veggies? The paleo diet is strictly meat, fruit and vegetables. NO grains, NO dairy. Grain and dairy didn't exist in the human diet during the Paleolithic (3.3 million years ago to 11,700 years ago).

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Profile picture for jodyjazz @jodyjazz

@garyr443
Well lucky me, I just had a dexa scan at 79-- and they said my bones were great, and I was at no risk of fracture. I have hit the ground hard a million times, being thrown off horses, water skiing and parachuting. I broke two ribs on a motorcycle (dirt bike) in the woods once and amazingly those are the only bones I have ever broken. I take a good multivitamin, B-complex, Omega oil, and CoQ10............otherwise nothing besides more Ibphrophen/acetaminophen than I should.

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@jodyjazz You are lucky, except for the ribs, that is. I've never been a horseman, but in my teens, I did ride offroad motorcylces. No accidents, though.

Hmmm....I was using CoQ10 with the HU and it spiked my platelets. It corrected after discontinuing the CoQ10, though. Maybe it's just me, if you're not getting the same response from it.

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Profile picture for nohrt4me (Jean) @nohrt4me

@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?

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@nohrt4me About some progressing to leukemia and others not doing so, I don't think it works that way. As explained to me by my hemtologist in 2014, I am in no danger of leukemia because I don't have the JAK2 mutation. My mutation is CALR Exon 9.

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Profile picture for garyr443 @garyr443

@nohrt4me About some progressing to leukemia and others not doing so, I don't think it works that way. As explained to me by my hemtologist in 2014, I am in no danger of leukemia because I don't have the JAK2 mutation. My mutation is CALR Exon 9.

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@garyr443 I am also CALR. It was my understanding that CALRs run less risk for clots, higher risk for progression.

There is a fair amount in the research on this. The following is from Blood Cancers
Today, a news aggregator site that cites a study done at Weill Cornell.
https://www.bloodcancerstoday.com/post/is-calr-mutated-essential-thrombocythemia-really-lower-risk
The increased risk is not huge, but is there.

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Hmm....I'll ask my hematologist about this. It was my understanding that, without the JAK2 mutation, I would be safe from leukemia. But....this does say "progression" to leukemia, sooo....

Thanks for the link. I'll read it.

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Profile picture for jodyjazz @jodyjazz

@garyr443 I have a retired racing Greyhound and I walk her twice a day. But since it is her walk, she gets to stop and sniff as often as she like stimulating her own brain cells. The tread mill allows me to maintain heart rate ect. Funny I just normally eat meat, fruit and veggies, and did not know I was inadvertently following a diet. ;_0

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@jodyjazz Well, I just returned from the store with my "cranberry juice," made by Oceanspray. Read the label and found out it says "100% Juice," with the word "cranberry" beneath it. Reading further, the ingredients are: "Cranberry Juice (water, cranberry juice concentrate), Apple juice (water, apple juice concentrate), Grape juice (water, grape juice concentrate, Pear Juice (water, pear juice concentrate), Natural Flavor, Ascorbic Acid (Vitamin C), Vegetable Concentrate for color." WTF!!!!???

Now I see why I couldn't find the OceanSpray PURE Cranberry Juice. This is so heavily diluted with water and other fruit juices it's useless for my purpose!

So, I got on my Amazon app and ordered 365 by Amazon brand, which is 100% cranberry juice. Costs a little more, but it's the right stuff.

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Profile picture for jodyjazz @jodyjazz

@garyr443 I have a retired racing Greyhound and I walk her twice a day. But since it is her walk, she gets to stop and sniff as often as she like stimulating her own brain cells. The tread mill allows me to maintain heart rate ect. Funny I just normally eat meat, fruit and veggies, and did not know I was inadvertently following a diet. ;_0

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@jodyjazz Aside from the cranberry juice surprise, my latest CB-Diff test show my platelets have risen a little (with HU, of course), though still normal (326,000).

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Great news, you must be on to something!

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Well, Amazon has reported some delay in the shipment of my cranberry juice (it's always something!), but now I know that the 365 brand is a Whole Foods house brand, so I can go to any Whole Foods store to get it from now on, instead of ordering from Amazon.

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