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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Sounds like you are far more disapplied a person than I for sure! Have you tested these foods without the HU?
For me that would be the "clinical trial" (kidding). Also what is Paleo diet - not that I have the skills to stay on any diet. I can barely get myself to get on my treadmill everyday (or so) for 30 minutes.

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Profile picture for garyr443 @garyr443

@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.

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@garyr443
I hope you have medical overwatch for this experiment. I think it takes 3-months for the HU to deplete completely. I'm pretty brave but not brave enough to risk haveing a stroke and NON-dying.

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Like I said, my hematologist backs what I'm doing. I'm not sure how long the HU remains in my system, but I doubt I'm in any danger of my platelet count falling rapidly or falling to thrombocytopenia level. As for my bloodpressure, without the Lisinopril, I have a bloodpressure monitor I'll be using daily to check it. Given my experience of living an active lifestyle while having a platelet count in the millions, back in 2014, I don't think I'm in much danger, especially since cranberry juice is noted for reducing platelet count (which is why I want to use it). After all, my CALR Exon 9 mutation wants to raise platelet count. Without the HU, and with the mutation still there, of course, it's more likely my platelet count might rise than fall catastrophically. Since the cranberry juice should lower my platelet count, It's highly unlikely that my platelet count will rise when I'm expecting it to at least remain stable in the normal range. Either way, I think I'm safe enough.

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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 All valid points, but my own experience has been that I had ET that was untreated from age 52 to 62, when an accident brought me to the E.R. where my platelet count was found to be in the millions. So, I have survived extremely high platelet count and it has never been below 200,000. As for my expected longevity, with or without ET and Hydroxyurea, it's the same (about 86) according to actuarials based soley on my age and sex. So, I'm not worried about how long I may live. Quality of life is my major concern. Also, I don't have any circulatory, respiratory or other issues.
Getting back to the experience with the cheese, salmon and tuna, replacing my ground beef with these foods and eating nothing but salmon or tuna (varying by cost. Tuna is cheaper) and a LOT of cheddar cheese for over a month is the ONLY factor at play in my platelets rising from normal to 495,000. The cessation of these foods was the ONLY change that brought my platelet count back to normal. I'm no scientist, but I have a pretty good grasp of causality. I'm not saying this would happen with anyone else, but it did happen with me.

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Profile picture for jodyjazz @jodyjazz

Sounds like you are far more disapplied a person than I for sure! Have you tested these foods without the HU?
For me that would be the "clinical trial" (kidding). Also what is Paleo diet - not that I have the skills to stay on any diet. I can barely get myself to get on my treadmill everyday (or so) for 30 minutes.

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@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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Profile picture for garyr443 @garyr443

Like I said, my hematologist backs what I'm doing. I'm not sure how long the HU remains in my system, but I doubt I'm in any danger of my platelet count falling rapidly or falling to thrombocytopenia level. As for my bloodpressure, without the Lisinopril, I have a bloodpressure monitor I'll be using daily to check it. Given my experience of living an active lifestyle while having a platelet count in the millions, back in 2014, I don't think I'm in much danger, especially since cranberry juice is noted for reducing platelet count (which is why I want to use it). After all, my CALR Exon 9 mutation wants to raise platelet count. Without the HU, and with the mutation still there, of course, it's more likely my platelet count might rise than fall catastrophically. Since the cranberry juice should lower my platelet count, It's highly unlikely that my platelet count will rise when I'm expecting it to at least remain stable in the normal range. Either way, I think I'm safe enough.

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@garyr443
OK great. You see any reason I can't add a organic collagen peptide supplement to my morning smoothie for my aching joints?/

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Profile picture for garyr443 @garyr443

@nohrt4me All valid points, but my own experience has been that I had ET that was untreated from age 52 to 62, when an accident brought me to the E.R. where my platelet count was found to be in the millions. So, I have survived extremely high platelet count and it has never been below 200,000. As for my expected longevity, with or without ET and Hydroxyurea, it's the same (about 86) according to actuarials based soley on my age and sex. So, I'm not worried about how long I may live. Quality of life is my major concern. Also, I don't have any circulatory, respiratory or other issues.
Getting back to the experience with the cheese, salmon and tuna, replacing my ground beef with these foods and eating nothing but salmon or tuna (varying by cost. Tuna is cheaper) and a LOT of cheddar cheese for over a month is the ONLY factor at play in my platelets rising from normal to 495,000. The cessation of these foods was the ONLY change that brought my platelet count back to normal. I'm no scientist, but I have a pretty good grasp of causality. I'm not saying this would happen with anyone else, but it did happen with me.

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@garyr443 I am all about quality vs quantity of life, too. I let the doc deal with the labs and meds. That's what I pay her for.

Fatigue was a prob for me. I moderated starches and sweets, cut out fast food, upped water intake, and started pushing myself a bit more to make goals on the pedometer.

No change in platelets, but energy levels improved enough for me to enjoy life a bit more, and constipation from HU went away (switched from probiotics the doc gave me to yogurt, which works better for me).

Had to make additional dietary changes after husband's heart attack. My cholesterol levels looked great a year later, but his not so much even on meds. So, two people, same diet, different results.

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Profile picture for nohrt4me (Jean) @nohrt4me

@garyr443 I am all about quality vs quantity of life, too. I let the doc deal with the labs and meds. That's what I pay her for.

Fatigue was a prob for me. I moderated starches and sweets, cut out fast food, upped water intake, and started pushing myself a bit more to make goals on the pedometer.

No change in platelets, but energy levels improved enough for me to enjoy life a bit more, and constipation from HU went away (switched from probiotics the doc gave me to yogurt, which works better for me).

Had to make additional dietary changes after husband's heart attack. My cholesterol levels looked great a year later, but his not so much even on meds. So, two people, same diet, different results.

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@nohrt4me Yep, agreed. That said, though, I tend to be a proactive patient. I read up on what is affecting me so I know how to intelligently discuss it with my doctor. This works so much better than "Gee, Doc, what's the matter with me, huh?" My doctors (all two of them) appreciate my taking an active interest in my condition and my treatment.

No change in platelets is a good thing (unless it's too high, that is). I'm assuming that, like most of us here, your problem is high platelet count.

Yogurt can help with constipation, but keep an eye on your A1c.

Personally, I'm not concerned about cholesterol, especially since it has been determined that it has no effect on cardiovascular health. This was two or three years ago.

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Profile picture for jodyjazz @jodyjazz

@garyr443
OK great. You see any reason I can't add a organic collagen peptide supplement to my morning smoothie for my aching joints?/

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@jodyjazz Hmmm....well, I must admit I know nothing about collagen peptide supplements, organic or otherwise. Sounds like a question for your doctor. But, there are things you can do/take/eat for aching joints. Do you take calcium? That would be a good start. I had a DEXA Skeletal Scan in March that told me that by 10 years from now, I "may" have a fracture in my left hip and my neck. This doesn't really surprise me, as the bicyclist who hit me in 2014 impacted with my left hip and this no doubt tossed my head to the left, putting a strain on my neck. Since then, I do have limited range of motion in my neck and not without pain, either. That aside, I have never had a broken bone in my life. Even before the DEXA Scan, I began taking 1,200 mg of Calcium (with Vit.D) daily and it does seem to be helping with my joints. I lost 1/8" of my height at some point, so there is a deteriorating disk at the base of my spine. Hopefully, the calcium will help restore this, though I doubt it. Not being able to eat dairy anymore (which can cause Type 2 Diabetes as well as elevate my platelets, apparently) is a bit of a handicap.

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Profile picture for garyr443 @garyr443

@jodyjazz Hmmm....well, I must admit I know nothing about collagen peptide supplements, organic or otherwise. Sounds like a question for your doctor. But, there are things you can do/take/eat for aching joints. Do you take calcium? That would be a good start. I had a DEXA Skeletal Scan in March that told me that by 10 years from now, I "may" have a fracture in my left hip and my neck. This doesn't really surprise me, as the bicyclist who hit me in 2014 impacted with my left hip and this no doubt tossed my head to the left, putting a strain on my neck. Since then, I do have limited range of motion in my neck and not without pain, either. That aside, I have never had a broken bone in my life. Even before the DEXA Scan, I began taking 1,200 mg of Calcium (with Vit.D) daily and it does seem to be helping with my joints. I lost 1/8" of my height at some point, so there is a deteriorating disk at the base of my spine. Hopefully, the calcium will help restore this, though I doubt it. Not being able to eat dairy anymore (which can cause Type 2 Diabetes as well as elevate my platelets, apparently) is a bit of a handicap.

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@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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