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zelbo, forever? and nutrition?

Forums General Melanoma Community zelbo, forever? and nutrition?

  • Post
    beatricefromPARIS
    Participant

      Hi all

      After one month on Zelboraf, palpable tumors have greatly reduced but I find it very tiring.  Basically I stay in bed over 50% of the day, whereas before I was in much better shape before (apart from mel growing!).

      The joint pain is high but not the same every day. I was wondering whether it can be impacted by nutrition. Should I reduce dairy products for example? Has anybody noticed any such correlation?

      I take the 4 pills away from meals but it seems that the lab is now changing its guidance on this to "during meals". Confusing!

      Hi all

      After one month on Zelboraf, palpable tumors have greatly reduced but I find it very tiring.  Basically I stay in bed over 50% of the day, whereas before I was in much better shape before (apart from mel growing!).

      The joint pain is high but not the same every day. I was wondering whether it can be impacted by nutrition. Should I reduce dairy products for example? Has anybody noticed any such correlation?

      I take the 4 pills away from meals but it seems that the lab is now changing its guidance on this to "during meals". Confusing!

      Also, I keep reading on the net about successful stage IV Zelboraf patients who have been taking it for many months/even years…That's nice because it means it is working ! But my first impression is that the quality of life can be low…  

      Is there anyone around who took Zelboraf, became NED and could stop the medication?

       

       Beatrice Stage IV since feb 2009, 7th treatment underway.

    Viewing 8 reply threads
    • Replies
        LynnLuc
        Participant

          I am on Anti PD 1 and my basic trial is two twelve weeks with anti PD 1 infusion and 6 peptide injections in my thighs every 2 weeks…after that it went to infusions of anti pd 1 once every 3 months with scans.I do these for 2 years.  I have about 2 or 3 of the infusions left in the trial…BUT my onc says if I remain NED he believes I shold consider taking ti basically forever…I know I do not have the energy anymore and I have some joint and knuckle pain now and again…but considering I am stage 4 and being NED for 2 years now I don't  want to stop taking it. If I did and it comes back I don't think I coudl handle it….I think considering all things I am just going to have to push myself and get some energy back…I have been sitting on my butt waiting to die for so long and realize now I am going to live…I think part of my lack of energy has to do with my thyroid be fired and having some depression on and off. Life is now all about changes and I need to adjust.

          LynnLuc
          Participant

            I am on Anti PD 1 and my basic trial is two twelve weeks with anti PD 1 infusion and 6 peptide injections in my thighs every 2 weeks…after that it went to infusions of anti pd 1 once every 3 months with scans.I do these for 2 years.  I have about 2 or 3 of the infusions left in the trial…BUT my onc says if I remain NED he believes I shold consider taking ti basically forever…I know I do not have the energy anymore and I have some joint and knuckle pain now and again…but considering I am stage 4 and being NED for 2 years now I don't  want to stop taking it. If I did and it comes back I don't think I coudl handle it….I think considering all things I am just going to have to push myself and get some energy back…I have been sitting on my butt waiting to die for so long and realize now I am going to live…I think part of my lack of energy has to do with my thyroid be fired and having some depression on and off. Life is now all about changes and I need to adjust.

            LynnLuc
            Participant

              I am on Anti PD 1 and my basic trial is two twelve weeks with anti PD 1 infusion and 6 peptide injections in my thighs every 2 weeks…after that it went to infusions of anti pd 1 once every 3 months with scans.I do these for 2 years.  I have about 2 or 3 of the infusions left in the trial…BUT my onc says if I remain NED he believes I shold consider taking ti basically forever…I know I do not have the energy anymore and I have some joint and knuckle pain now and again…but considering I am stage 4 and being NED for 2 years now I don't  want to stop taking it. If I did and it comes back I don't think I coudl handle it….I think considering all things I am just going to have to push myself and get some energy back…I have been sitting on my butt waiting to die for so long and realize now I am going to live…I think part of my lack of energy has to do with my thyroid be fired and having some depression on and off. Life is now all about changes and I need to adjust.

              Richard_K
              Participant

                Beatrice

                I almost always take my pills shortly after breakfast and dinner and I have made no significant changes to my diet since starting Zelboraf. (I don't have the same desire for sweets as I remember but part of that is helping my wife to diet by keeping them out of the house as much as possible.)

                As to your comment about "quality of life", I have learned to adjust where needed.  I used to love working in the garden but now have to take extra sun precautions that to some degree limit my gardening. Some days my feet hurt more than others and my knees are sore (arthritis?).  But, I can definitely say that I do not feel like I have anything except a high quality of life.

                Dick

                Richard_K
                Participant

                  Beatrice

                  I almost always take my pills shortly after breakfast and dinner and I have made no significant changes to my diet since starting Zelboraf. (I don't have the same desire for sweets as I remember but part of that is helping my wife to diet by keeping them out of the house as much as possible.)

                  As to your comment about "quality of life", I have learned to adjust where needed.  I used to love working in the garden but now have to take extra sun precautions that to some degree limit my gardening. Some days my feet hurt more than others and my knees are sore (arthritis?).  But, I can definitely say that I do not feel like I have anything except a high quality of life.

                  Dick

                  Richard_K
                  Participant

                    Beatrice

                    I almost always take my pills shortly after breakfast and dinner and I have made no significant changes to my diet since starting Zelboraf. (I don't have the same desire for sweets as I remember but part of that is helping my wife to diet by keeping them out of the house as much as possible.)

                    As to your comment about "quality of life", I have learned to adjust where needed.  I used to love working in the garden but now have to take extra sun precautions that to some degree limit my gardening. Some days my feet hurt more than others and my knees are sore (arthritis?).  But, I can definitely say that I do not feel like I have anything except a high quality of life.

                    Dick

                    mbaelaporte
                    Participant

                      Hello Beatrice

                      not so much answer to your question but some more life exposure from someone who has experienced your Zelboraf therapy

                      I began w/ Z in June or so last year w / very impressive, tactile tumors and within 4 days there was dramatic shrinkage and after drug trial scan protocol ( thinking 8 weeks ) my Doc came in & addressed me Mr Remission

                      after 7 months or so disease had surmounted a workaround and after a brief non therapy window I have begun Yervoy ( Ipi ) and am enjoying good results

                      much of what I know is from this very board & I read of those w/ results that mirror mine & those that continue ( maybe in reduced potency ) Zelboraf  w/ success for years onward

                      and with the successes come side effects as you are experiencing

                      hoping w/ Spring comes more juice in your step

                      mbaelaporte
                      Participant

                        Hello Beatrice

                        not so much answer to your question but some more life exposure from someone who has experienced your Zelboraf therapy

                        I began w/ Z in June or so last year w / very impressive, tactile tumors and within 4 days there was dramatic shrinkage and after drug trial scan protocol ( thinking 8 weeks ) my Doc came in & addressed me Mr Remission

                        after 7 months or so disease had surmounted a workaround and after a brief non therapy window I have begun Yervoy ( Ipi ) and am enjoying good results

                        much of what I know is from this very board & I read of those w/ results that mirror mine & those that continue ( maybe in reduced potency ) Zelboraf  w/ success for years onward

                        and with the successes come side effects as you are experiencing

                        hoping w/ Spring comes more juice in your step

                        mbaelaporte
                        Participant

                          Hello Beatrice

                          not so much answer to your question but some more life exposure from someone who has experienced your Zelboraf therapy

                          I began w/ Z in June or so last year w / very impressive, tactile tumors and within 4 days there was dramatic shrinkage and after drug trial scan protocol ( thinking 8 weeks ) my Doc came in & addressed me Mr Remission

                          after 7 months or so disease had surmounted a workaround and after a brief non therapy window I have begun Yervoy ( Ipi ) and am enjoying good results

                          much of what I know is from this very board & I read of those w/ results that mirror mine & those that continue ( maybe in reduced potency ) Zelboraf  w/ success for years onward

                          and with the successes come side effects as you are experiencing

                          hoping w/ Spring comes more juice in your step

                      Viewing 8 reply threads
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