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Vitamin D Prescription

Forums General Melanoma Community Vitamin D Prescription

  • Post
    jennunicorn
    Participant

    So, my primary care doc had me do some regular blood tests last week, one of which was Vitamin D level. I have been curious since my melanoma madness began over a year ago what my level was, but was one of those things I kept forgetting to ask my onc to test for me.

    Well, it's super low at 13. Not really surprised that it is low, but was hoping for a little better of a number. My doc wants me to start on a prescription Vitamin D 2 at 50000 iU. I sent a message to my onc to make sure that will be ok to take while on treatment before I start it. My primary wants me to take it for 2 months then retest me and I guess go from there.

    Has anyone else been on a prescription Vit D before? I didn't even know it was a thing until now.

    Of course having read (on awesome Celeste's blog) that low Vit D levels in mel patients is associated with poorer outcomes.. I want my levels wayyy up! I guess my orange juice w/ vit D and almond milk w/ vit D just isn't doin it. On top of this my cholesterol tests were a little high…. ugh, can't I just eat cheeseburgers, drink wine, and not exercise without having my cholesterol affected?? No? Dang it! Time to dust off the treadmill..

Viewing 17 reply threads
  • Replies
      sister of patient
      Participant

      Hi Jenn – Can't speak to scripts for Vit D for mel but my doc prescribed it to me for osteo p. Only mentioning this because, like you, I'm crazy for almond milk and soya milk too and always thought I was getting plenty of D. I'll be interested to see what others say.

      Also, thanks for the chuckle at the end of your post 🙂  and last, wanted to tell you before but that's a great pic of you and your pup!! 

      Wishing you the best always!

      Barb

      sister of patient
      Participant

      Hi Jenn – Can't speak to scripts for Vit D for mel but my doc prescribed it to me for osteo p. Only mentioning this because, like you, I'm crazy for almond milk and soya milk too and always thought I was getting plenty of D. I'll be interested to see what others say.

      Also, thanks for the chuckle at the end of your post 🙂  and last, wanted to tell you before but that's a great pic of you and your pup!! 

      Wishing you the best always!

      Barb

        jennunicorn
        Participant

        Interesting that Vit D levels affect our bones, had no idea, but glad I got tested and I can get to a normal range now.

        Thank you Barb 🙂

        jennunicorn
        Participant

        Interesting that Vit D levels affect our bones, had no idea, but glad I got tested and I can get to a normal range now.

        Thank you Barb 🙂

        jennunicorn
        Participant

        Interesting that Vit D levels affect our bones, had no idea, but glad I got tested and I can get to a normal range now.

        Thank you Barb 🙂

      sister of patient
      Participant

      Hi Jenn – Can't speak to scripts for Vit D for mel but my doc prescribed it to me for osteo p. Only mentioning this because, like you, I'm crazy for almond milk and soya milk too and always thought I was getting plenty of D. I'll be interested to see what others say.

      Also, thanks for the chuckle at the end of your post 🙂  and last, wanted to tell you before but that's a great pic of you and your pup!! 

      Wishing you the best always!

      Barb

      Janner
      Participant

      I've done it multiple times.  Mine was 8 when I first tested.  No negative effects from taking it.  In fact, I need to test mine again to see if I'm anywhere near normal.  Thanks for the reminder. 

      Janner
      Participant

      I've done it multiple times.  Mine was 8 when I first tested.  No negative effects from taking it.  In fact, I need to test mine again to see if I'm anywhere near normal.  Thanks for the reminder. 

        jennunicorn
        Participant

        Good to know no negative effects, thanks Janner… and you're welcome for the reminder 🙂

        jennunicorn
        Participant

        Good to know no negative effects, thanks Janner… and you're welcome for the reminder 🙂

        jennunicorn
        Participant

        Good to know no negative effects, thanks Janner… and you're welcome for the reminder 🙂

      Janner
      Participant

      I've done it multiple times.  Mine was 8 when I first tested.  No negative effects from taking it.  In fact, I need to test mine again to see if I'm anywhere near normal.  Thanks for the reminder. 

      Gene_S
      Participant

      My husband has done extensive research on vitamin D and the one that you need is vitamin D3.  Of course the best place to get it is from the sun just 10 to 15 minutes a day with exposed skin.  Not enough to burn or do any damage.  The test for vitamin d3 is Hydroxyl 25.  Any patient with cancer should get his levels up to the 80's at least.  13 is very dangerous as when the Vitamin d3 is to low it robs calcium from the bones trying to replace it.  I was down to 17 when first tested and a couple of months later fell and had compound fractures in my arm.  We also found that nearly everyone north of Atlanta GA is deficient because we don't get enough sunny days where we can expose skin to absorb Vitamin D3.  Also it is not a Vitamin actually it is a hormone.  When he was doing his Ipi trial he was on 10,000 of vitamin D3 daily to maintain his levels and was tested regularly to watch his levels.  Even newborn babies are born Vitamin D3 deficient because there mothers are so lacking in vitamin D3 and this information we got from his research nurse as she worked with pregnant mothers before changing to melanoma cancer.

      Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

      Gene_S
      Participant

      My husband has done extensive research on vitamin D and the one that you need is vitamin D3.  Of course the best place to get it is from the sun just 10 to 15 minutes a day with exposed skin.  Not enough to burn or do any damage.  The test for vitamin d3 is Hydroxyl 25.  Any patient with cancer should get his levels up to the 80's at least.  13 is very dangerous as when the Vitamin d3 is to low it robs calcium from the bones trying to replace it.  I was down to 17 when first tested and a couple of months later fell and had compound fractures in my arm.  We also found that nearly everyone north of Atlanta GA is deficient because we don't get enough sunny days where we can expose skin to absorb Vitamin D3.  Also it is not a Vitamin actually it is a hormone.  When he was doing his Ipi trial he was on 10,000 of vitamin D3 daily to maintain his levels and was tested regularly to watch his levels.  Even newborn babies are born Vitamin D3 deficient because there mothers are so lacking in vitamin D3 and this information we got from his research nurse as she worked with pregnant mothers before changing to melanoma cancer.

      Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

        jennunicorn
        Participant

        Thanks for the info. The test was Hydroxyl-25, doesn't say D3, just says test is general Vit D. I have plenty of sun here in California, so I could try and catch more rays every day.

        jennunicorn
        Participant

        Thanks for the info. The test was Hydroxyl-25, doesn't say D3, just says test is general Vit D. I have plenty of sun here in California, so I could try and catch more rays every day.

        jennunicorn
        Participant

        Thanks for the info. The test was Hydroxyl-25, doesn't say D3, just says test is general Vit D. I have plenty of sun here in California, so I could try and catch more rays every day.

      Gene_S
      Participant

      My husband has done extensive research on vitamin D and the one that you need is vitamin D3.  Of course the best place to get it is from the sun just 10 to 15 minutes a day with exposed skin.  Not enough to burn or do any damage.  The test for vitamin d3 is Hydroxyl 25.  Any patient with cancer should get his levels up to the 80's at least.  13 is very dangerous as when the Vitamin d3 is to low it robs calcium from the bones trying to replace it.  I was down to 17 when first tested and a couple of months later fell and had compound fractures in my arm.  We also found that nearly everyone north of Atlanta GA is deficient because we don't get enough sunny days where we can expose skin to absorb Vitamin D3.  Also it is not a Vitamin actually it is a hormone.  When he was doing his Ipi trial he was on 10,000 of vitamin D3 daily to maintain his levels and was tested regularly to watch his levels.  Even newborn babies are born Vitamin D3 deficient because there mothers are so lacking in vitamin D3 and this information we got from his research nurse as she worked with pregnant mothers before changing to melanoma cancer.

      Judy (loving wife of Gene Stage IV and now NED for over 4.5 years)

      keepthefaith11
      Participant
      Jenn, I agree with Judy. Vitamin D3 is the one you need. Not sure why they are prescribing you D2. I think most people definitely need supplementation with vitamin D. Mine was down to 23 and I ended up taking 6000 IU for a whole year. It then went up to 43. Still not high enough for me and definitely not high enough for someone battling cancer. My doctor told me to continue taking 6000 IU and retest in another year.

      My husband on the other hand has never taken of supplements and his levels were 45 right off the bat. He is not out in the sun much either. I think it differs from person to person, but since you seem to run low levels it is extremely important to get a boost right away!

      Also, very important, is to take vitamin K along with it for best absorption. Not sure about the prescription kind of vitamin D, but we have had good luck with the Life Extension brand drops or the Biotics brand drops. Life extension also has a pill that has 5000 IU vitamin D & K all in one.

      Annie

      keepthefaith11
      Participant
      Jenn, I agree with Judy. Vitamin D3 is the one you need. Not sure why they are prescribing you D2. I think most people definitely need supplementation with vitamin D. Mine was down to 23 and I ended up taking 6000 IU for a whole year. It then went up to 43. Still not high enough for me and definitely not high enough for someone battling cancer. My doctor told me to continue taking 6000 IU and retest in another year.

      My husband on the other hand has never taken of supplements and his levels were 45 right off the bat. He is not out in the sun much either. I think it differs from person to person, but since you seem to run low levels it is extremely important to get a boost right away!

      Also, very important, is to take vitamin K along with it for best absorption. Not sure about the prescription kind of vitamin D, but we have had good luck with the Life Extension brand drops or the Biotics brand drops. Life extension also has a pill that has 5000 IU vitamin D & K all in one.

      Annie

      keepthefaith11
      Participant
      Jenn, I agree with Judy. Vitamin D3 is the one you need. Not sure why they are prescribing you D2. I think most people definitely need supplementation with vitamin D. Mine was down to 23 and I ended up taking 6000 IU for a whole year. It then went up to 43. Still not high enough for me and definitely not high enough for someone battling cancer. My doctor told me to continue taking 6000 IU and retest in another year.

      My husband on the other hand has never taken of supplements and his levels were 45 right off the bat. He is not out in the sun much either. I think it differs from person to person, but since you seem to run low levels it is extremely important to get a boost right away!

      Also, very important, is to take vitamin K along with it for best absorption. Not sure about the prescription kind of vitamin D, but we have had good luck with the Life Extension brand drops or the Biotics brand drops. Life extension also has a pill that has 5000 IU vitamin D & K all in one.

      Annie

        jennunicorn
        Participant

        Thanks Annie, I will ask about D3. It's just my primary care doc prescribing, so she's not looking at it from a melanoma standpoint, just a regular patient standpoint.. so that could be why she is going with D2, could just be the basic prescription for anyone with low levels. Will ask about Vit K too. Hope your dad is doing better.

        jennunicorn
        Participant

        Thanks Annie, I will ask about D3. It's just my primary care doc prescribing, so she's not looking at it from a melanoma standpoint, just a regular patient standpoint.. so that could be why she is going with D2, could just be the basic prescription for anyone with low levels. Will ask about Vit K too. Hope your dad is doing better.

        jennunicorn
        Participant

        Thanks Annie, I will ask about D3. It's just my primary care doc prescribing, so she's not looking at it from a melanoma standpoint, just a regular patient standpoint.. so that could be why she is going with D2, could just be the basic prescription for anyone with low levels. Will ask about Vit K too. Hope your dad is doing better.

      knittingirl
      Participant

      Dr Wei ( UCSF)  prescribed me a Vit D test a few years ago and I was as low as you are. I had a prescription of Vit D at a very high dose to boost my level. I am currently at 2000 ui per day and my level is fine. She made me retest my level every year but so far I am good.

      knittingirl
      Participant

      Dr Wei ( UCSF)  prescribed me a Vit D test a few years ago and I was as low as you are. I had a prescription of Vit D at a very high dose to boost my level. I am currently at 2000 ui per day and my level is fine. She made me retest my level every year but so far I am good.

      knittingirl
      Participant

      Dr Wei ( UCSF)  prescribed me a Vit D test a few years ago and I was as low as you are. I had a prescription of Vit D at a very high dose to boost my level. I am currently at 2000 ui per day and my level is fine. She made me retest my level every year but so far I am good.

        jennunicorn
        Participant

        Good to know, thanks 

        jennunicorn
        Participant

        Good to know, thanks 

        jennunicorn
        Participant

        Good to know, thanks 

        debwray
        Participant

        Hi Jenn,

        Agree D3 seems to be the one needed. UK guidelines from NICE recommend testing on diagnosis of Mel and supplementing until higher level of standard range reached.

        Best wishes

        Debm

         

        debwray
        Participant

        Hi Jenn,

        Agree D3 seems to be the one needed. UK guidelines from NICE recommend testing on diagnosis of Mel and supplementing until higher level of standard range reached.

        Best wishes

        Debm

         

        debwray
        Participant

        Hi Jenn,

        Agree D3 seems to be the one needed. UK guidelines from NICE recommend testing on diagnosis of Mel and supplementing until higher level of standard range reached.

        Best wishes

        Debm

         

      jennunicorn
      Participant

      I did get my doc to change it to D3, so I'll be starting that tomorrow. Thanks for the info everyone!

      jennunicorn
      Participant

      I did get my doc to change it to D3, so I'll be starting that tomorrow. Thanks for the info everyone!

      jennunicorn
      Participant

      I did get my doc to change it to D3, so I'll be starting that tomorrow. Thanks for the info everyone!

Viewing 17 reply threads
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