zelbo, forever? and nutrition?

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.

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.

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.

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

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

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

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

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

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