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vit D and skin cancer
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hi only me again..... just been readin chewits vit d discussion and its actually of great interest to me.do alot of people with PKD have vit d difficiancies? i was diagnosed 2 yrs ago with a stage 2 deep malignant melanoma on my thigh of all places.im very fair and freckly so as a rule i dont lie in the sun.so i was very shocked to be diagnosed with the worst kind of skin cancer.at one of my check ups i was asked if i knew about vit d ? aparently alot of skin cancer surrerers have a difficaincy. ive never been told i have and i now take supplements on their advice.could there be a possible link for me between the two.its certainly some thing i will bring up at my next clinics.xxxx
Posted on 12/25/09, 12:55 pm
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Reply #1 - 12/26/09  5:28am
" oh another thing , my gfr is 31 at one hospital and 23 at another!!my nephro says its tested diff at the other hospital, but surely result would be the same after all my blood doesnt change dependin which hospital it going to.. ok if diff was 1 or 2 but 31-23 is a massive diff. has any one else had this prob xxx "
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Reply #2 - 12/26/09  12:48pm
" Lynne,
My GFR is like a yo-yo; it goes up and down depending on so many factors. Time of day (serum creatinine is lowest a 7am; highest at 7pm), what I've had to eat in the days leading up to the tests (more cooked meat, higher serum creatinine), and especially what GFR formula is used.

There are two formulas. The MDRD formula (Modification of Diet in Renal Disease) is the most commonly used in both the US and UK and only uses serum creatinine as a variable. It assumes every woman has the same body surface area (same height and weight). By contrast, the Cockgrof-Gault formula uses serum creatinine, BUN, albumin as at least weight if not also height as variables. Most researches prefer the Cockcroft-Gault formula, finding it more accurate for their precise work.

As you can tell from the comments above, based on the formula used, weight alone can make a significant difference in your GFR results. Back when I very underweight (118 lbs), the lab spewed out 37 for my GFR based on the MDRD formula. But when my doctor plugged the variables into the Cockcroft-Gault formula, my GFR plummeted to 25.

Ironically, now that I've gained weight, both actual weight, which was desperately neded, as well just more cystsic liver weight (my liver has gone from an estimated 15 pounds to 30+ pounds and counting), my calculated GFR is ~34 - 37 using both formulas. But subtract out that useless cystic liver weight and I'm still at 25 with the Cockcroft-Gault formula. Alas, I have other challenges with kidney fucntion tests (creatinine clearance doesn't match GFR; my creatinine clearance is ~28) so I remain a challenge for the liver/kidney transplant team.

The other reason for the differences at the two hospitals could be when you're sick, your serum creatinine naturally goes up and as a result, your GFR naturally goes down. This is usually a temporary change and your function returns to normal when you recover.

Finally, if you are on IV fluids (usually due to illness), after a period of time your kidney function can look much better than it actually is (fluids dilute everything, making creatinine and BUN look better, but your hematocrit and hemoglobin look worse). This too can cause a change in the calculated GFR, but again, it's temporary and the numbers go back to normal once the fluids are discontinued and your body returns to its normal fluid state.

I hope that explaination helps to explain the differences in formulas or other reasons why the two hospitals may be showing different GFRs. As always, check with your doctor or in that online nephro system to see which forumlas are being used and/or if one is showing your absolute GFR (which also uses your actual weight). Check a calendar too; you may remember that you were miserably sick when some of the labs were drawn.

As for the Vitamin D supplementation, please talk with both your nephrologist and oncologist to determine what the optimal dosing of Vitamin D is for your particular case. Hopefully your doctors are working together to ensure you are getting the best possible treatment.

We want you to be here for a very long time. I know your doctors have probably already told you to wear sunblock, but please, let me repeat it. Regardless whether you plan spend time outdoors or not, please be sure to use the strongest possible sunblock every day. You can be exposed to UV rays through the kitchen window or the window of your car (in the UK and Australia, most sun exposure and skin cancers occur on the right side of the arms, neck and head; in the US and rest of the world, it occurs on the left...in both cases those are the sides of the upper body most exposed when driving). Even exposure on a cloudy day, walking to the mailbox or the grocer, is too much for you. Slather yourself at least a shot glass full of a good, high SPF sunblock from head to toe every day of the year at least 30 minutes before you plan to go outside (you can choose a moisturizing sunblock in winter to help offset the dry air from central heat and wool clothes). The EU has the most stringent labeling requirements when it comes to sunscreen, so look for one that blocks both UVA and UVB rays (unlike the US, the EU requires much more testing and truth in advertising on non-FDA regulated items). I thank God they found your melanoma when they did and I pray you never have a recurrence. Just please, do all you can to avoid any sun exposure and keep your children well protected as well.

Gentle hugs and best wishes for a very Happy New Year!
Ruth "
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Reply #3 - 12/26/09  3:57pm
" ruth would you like to move to the uk and be my nephro, you always make so much sence and make me feel a little better about things. your a fantastic lady...THANK YOU xxxxx "
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Reply #4 - 12/27/09  12:32am
" Hey Lynne,

Yes, PKD patients usually have a vit D issue. I have taken 1000 iu daily for the last 2 years and my levels are within normal range. My biological brother & sister have not & he is on a transplant list & she only has 50% kidney function. thought I have 63 cysts of various sizes on my kidneys, pancreas & liver (one is 16 cm) my kidney funtion is at 90%. Does the vit D have anything to do with it? I don't know. But, they have not utilized it nor the omega 3 fish oil, which I take daily. As Ruth said, before you start taking ANY supplement, talk with your doctors & nephrologist.

I also like my red wine, so I could be pickled as well. :)

Karen "
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Reply #5 - 12/27/09  12:35am
" Oh, one more thing; I grew up on Long Island & spent Friday thru Sunday at the beach, without sunblock. In the 70's, we were all trying to get as tan as we could. I am of northern european discent & very freckly. My mother,father & brother(adopted) have all had skin cancer, but at 42, I'm still ok.

PS---My kids don't leave the house without block 50 on.

Karen "
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Reply #6 - 12/27/09  11:39am
" Lynne,
Thanks! I've always been fascinated with medicine and also have a strong sense of self preservation. Although I had the luxury of some excellent doctors when I was first diagnosed (and have some excellent doctors now), I had some incredibly dangerous, medically illiterate physicians in the interim who would have put me in renal failure or worse if I had followed their direction. One told 10+ years ago to reduce my fluid intake to 900 ml for no reason. He did have partial ownership in a dialysis clinic so I figured he was just trying to increase that part of his business. Another wrote a script for a medication I have a life-threatening reaction to--his rationalization was I had grown out of my allergy, which I most assuredly have not! I'm fortunate in that I was pre-med in college and am not only able to understand most of what I read on the more technical sites, but also able to disociate myself from the pictures and words and read about PKD and kidneys from an objective viewpoint and then explain it to others. My dream job would be to work in patient advocacy, helping the patient understand their disease and navigate the system to their benefit, so this is a small way to help fulfill part of that dream.

For all,
One of the many functions of the kidneys is to convert the vitamin D we get in our foods or from sun exposure to the active form our body can use. As our kidney function declines our kidneys lose the ability to convert the vitamin D and thus we may end up with a vitamin D deficiency. This is why it's all the more important for supplements to be coordinated with your doctors; they need to be the right type of supplement and not the ones that will just build up in your system, unconverted. Regular bloodwork is also essential, two different labs, one to check for circulating levels of the active form of vitamin D and the other checking for stored levels. In addition, while there are standards for vitamin D levels, not all doctors treat to the standard. It's up to us, as patients, to be proactive and ask for the tests (both of them) and ask for appropriate treatment.

It's also essential to know that too much vitamin D can be just as dangerous as too little. Too much over an extended period of time can cause dramatically phosphourous levels and immunosuppressant toxicity, so regular lab work is also necessary. So please, work with your doctor(s) and get lab work done before and during supplementation. When I first started supplementation, I was given 50,000 IU of vitamin D, once per week for 4 weeks, then my levels were rechecked in 8 weeks (I was seriously low on Vitamin D). After that, my doctor prescribed 600-1000 IU of vitamin D in conjunction with my calcium supplement, plus another 200 IU in my multivitamin. He now checks my levels at least quarterly, if not more often depending on the reason for the test (generally more frequently simply because the vitamin D tests come from the same test tube as a couple of other labs I need on a more regular basis). I always ask for copies and keep my own lab result spreadsheet going back to 1986.

If anyone wants a copy of the lab spreadsheet template (it's an Excel spreadsheet), please send me a message with your email address and I'll be happy to send it to you. I can't attach anything to the daily strength messages, so you need to give me an outside email address.

Ruth "
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Reply #7 - 12/27/09  5:05pm
" It's my understanding that Malignant Melanoma is not related to sun exposure, and is often found in areas where the sun does not shine.
The skin exposed to sun is somewhat protected by vit. D and sunscreen, and just staying out of the sun except for a very short time so that the body can make vit. D..(if possible). I had basal cell cancer on my face removed years ago and was told that it is one of the types directly related to sun exposure. I never sunbathed and have always worn sunscreen but did a lot of gardening with sun glasses on. It was on the side of nose close to bridge where the glasses covered and probably where the sunscreen was not applied thick enough or it sweated off. Years ago the sunscreens weren't as good as they are now. "
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Reply #8 - 12/28/09  5:30am
" i was told the damage is done in the first 20yrs of life, so my malignant melanoma was prob a result of me playin in a paddling pool as a child. as you say sun creams werent as good as they are now,men mainly get them on their back and women on lower legs. they certainly do stem from the sun, i was in big trouble in the summer 4 gettin back from my hols with a very very slight tan even though i use factor 40+.are you all clear now? ive another 3 yrs before i get all clear and there is 3 more areas they concerned about. hope ya had a lovely xmas pkdlin xx "

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