pet scan results

HI……..so sorry you are at these crossroads, you are not alone, so many of us on this board are all searching for answers and treatments and confirmation in the choices we make ………. we all share the same fears.  We all have to deal with the cards we are dealt!  Please understand there are no right or wrong choices here, only our best options and what we know…that is all!  We do the best we can, we hope for the best and we keep our eyes focused on the future and what we invision for ourselves.  With that being said……..I've seen so many patient history's of the multiple treatments they have undergone and see their latest entries of  the "coveted" NED!!!      So please don't stop believn'n, this  could be you…..make it happen……or at least enjoy the journey that you so wanted for your  loved one, no one knows how this is going to end……be positive and hope for the best!!   All we have is today for everyone……we could all perish tomorrow with circumstances we did not forsee…..LIVE!     I love the saying and I do believe 🙂  What God has led you to …. he will see you through…….he will be there!!     Beieve!   …….   Swanee

HI……..so sorry you are at these crossroads, you are not alone, so many of us on this board are all searching for answers and treatments and confirmation in the choices we make ………. we all share the same fears.  We all have to deal with the cards we are dealt!  Please understand there are no right or wrong choices here, only our best options and what we know…that is all!  We do the best we can, we hope for the best and we keep our eyes focused on the future and what we invision for ourselves.  With that being said……..I've seen so many patient history's of the multiple treatments they have undergone and see their latest entries of  the "coveted" NED!!!      So please don't stop believn'n, this  could be you…..make it happen……or at least enjoy the journey that you so wanted for your  loved one, no one knows how this is going to end……be positive and hope for the best!!   All we have is today for everyone……we could all perish tomorrow with circumstances we did not forsee…..LIVE!     I love the saying and I do believe 🙂  What God has led you to …. he will see you through…….he will be there!!     Beieve!   …….   Swanee

HI……..so sorry you are at these crossroads, you are not alone, so many of us on this board are all searching for answers and treatments and confirmation in the choices we make ………. we all share the same fears.  We all have to deal with the cards we are dealt!  Please understand there are no right or wrong choices here, only our best options and what we know…that is all!  We do the best we can, we hope for the best and we keep our eyes focused on the future and what we invision for ourselves.  With that being said……..I've seen so many patient history's of the multiple treatments they have undergone and see their latest entries of  the "coveted" NED!!!      So please don't stop believn'n, this  could be you…..make it happen……or at least enjoy the journey that you so wanted for your  loved one, no one knows how this is going to end……be positive and hope for the best!!   All we have is today for everyone……we could all perish tomorrow with circumstances we did not forsee…..LIVE!     I love the saying and I do believe 🙂  What God has led you to …. he will see you through…….he will be there!!     Beieve!   …….   Swanee

Perhaps the conference was ASCO 2012 and the trial is one of the anti pd-1 trials. It's the most promising I think and its been in the news alot. I have been on it for 90 weeks and have been NED for over 2 years!  Sometimes melanoma grows initially with Yervoy and then it will shrink and go away. Don't give up on it yet!!

Perhaps the conference was ASCO 2012 and the trial is one of the anti pd-1 trials. It's the most promising I think and its been in the news alot. I have been on it for 90 weeks and have been NED for over 2 years!  Sometimes melanoma grows initially with Yervoy and then it will shrink and go away. Don't give up on it yet!!

Perhaps the conference was ASCO 2012 and the trial is one of the anti pd-1 trials. It's the most promising I think and its been in the news alot. I have been on it for 90 weeks and have been NED for over 2 years!  Sometimes melanoma grows initially with Yervoy and then it will shrink and go away. Don't give up on it yet!!

The side effects of Z are different for everyone.I am on it for almost 10 months and definitely can live with them.For me I have had some minor joint pain rarely now.Also had a lng period lost taste to many foods.That is comming back slowly now.Did loose a lot of hair ( wish it would grow back).The worst has been the runs I get for 1or 2 days every 3 or so weeks.I know you have to be out of the sun and wear snscreen when outside.i find I am not as sensitive as most people are.No fatigue which is common or feet pain.I will keep Lynn in my prayers .All the best .  Al

The side effects of Z are different for everyone.I am on it for almost 10 months and definitely can live with them.For me I have had some minor joint pain rarely now.Also had a lng period lost taste to many foods.That is comming back slowly now.Did loose a lot of hair ( wish it would grow back).The worst has been the runs I get for 1or 2 days every 3 or so weeks.I know you have to be out of the sun and wear snscreen when outside.i find I am not as sensitive as most people are.No fatigue which is common or feet pain.I will keep Lynn in my prayers .All the best .  Al

The side effects of Z are different for everyone.I am on it for almost 10 months and definitely can live with them.For me I have had some minor joint pain rarely now.Also had a lng period lost taste to many foods.That is comming back slowly now.Did loose a lot of hair ( wish it would grow back).The worst has been the runs I get for 1or 2 days every 3 or so weeks.I know you have to be out of the sun and wear snscreen when outside.i find I am not as sensitive as most people are.No fatigue which is common or feet pain.I will keep Lynn in my prayers .All the best .  Al

A lot of good advice here, if I could add a couple of comments.

First, there is not a lot of accumulated evidence concerning Zelboraf durability yet, don't forget FDA approval was less than one year ago.  I for one (of many) have been on for quite some time now, 28 months.

Second, as Al mentioned, side effects are different for everyone.  I have had plenty (see my profile) but today I basically have just two – photosensitivity and foot pain.  For the sun, I am sure to cover up with appropriate clothing, use sunscreen, and try to stay out of mid-day sun as much as possible.  As to the foot pain, some days they really hurt, but most days it's just an annoyance.  I joke with my wife that they hurt most on the days I do the floors in the house.

Anyway, those are a couple of my thoughts, good luck to you both

Dick

A lot of good advice here, if I could add a couple of comments.

First, there is not a lot of accumulated evidence concerning Zelboraf durability yet, don't forget FDA approval was less than one year ago.  I for one (of many) have been on for quite some time now, 28 months.

Second, as Al mentioned, side effects are different for everyone.  I have had plenty (see my profile) but today I basically have just two – photosensitivity and foot pain.  For the sun, I am sure to cover up with appropriate clothing, use sunscreen, and try to stay out of mid-day sun as much as possible.  As to the foot pain, some days they really hurt, but most days it's just an annoyance.  I joke with my wife that they hurt most on the days I do the floors in the house.

Anyway, those are a couple of my thoughts, good luck to you both

Dick

A lot of good advice here, if I could add a couple of comments.

First, there is not a lot of accumulated evidence concerning Zelboraf durability yet, don't forget FDA approval was less than one year ago.  I for one (of many) have been on for quite some time now, 28 months.

Second, as Al mentioned, side effects are different for everyone.  I have had plenty (see my profile) but today I basically have just two – photosensitivity and foot pain.  For the sun, I am sure to cover up with appropriate clothing, use sunscreen, and try to stay out of mid-day sun as much as possible.  As to the foot pain, some days they really hurt, but most days it's just an annoyance.  I joke with my wife that they hurt most on the days I do the floors in the house.

Anyway, those are a couple of my thoughts, good luck to you both

Dick

Just wondering if your Dr offered another round of IPI since he did have some response? Also, is there something they could irradiate? This can increase the efficacy of IPI.

I’m asking because I have had a similar response with one tumor in the liver that grew and that is what my Oncologist is recommending. Don’t forget about ant PD1 as well.

Good luck and keep fighting.

Julie in Las Vegas

Just wondering if your Dr offered another round of IPI since he did have some response? Also, is there something they could irradiate? This can increase the efficacy of IPI.

I’m asking because I have had a similar response with one tumor in the liver that grew and that is what my Oncologist is recommending. Don’t forget about ant PD1 as well.

Good luck and keep fighting.

Julie in Las Vegas

Just wondering if your Dr offered another round of IPI since he did have some response? Also, is there something they could irradiate? This can increase the efficacy of IPI.

I’m asking because I have had a similar response with one tumor in the liver that grew and that is what my Oncologist is recommending. Don’t forget about ant PD1 as well.

Good luck and keep fighting.

Julie in Las Vegas

I hear you.  This whole journey is pretty scary.  How lucky hyour husband is to have you by his side. Together you will work through your decisions.  You obviously look also to your faith for support.  You guys can do this. Sending hugs your way.

Hope

I hear you.  This whole journey is pretty scary.  How lucky hyour husband is to have you by his side. Together you will work through your decisions.  You obviously look also to your faith for support.  You guys can do this. Sending hugs your way.

Hope

I hear you.  This whole journey is pretty scary.  How lucky hyour husband is to have you by his side. Together you will work through your decisions.  You obviously look also to your faith for support.  You guys can do this. Sending hugs your way.

Hope