FitzChieco

I appreciate the responses that we have received so far.  We feel that we are working with a good team.  Kevin is being treated at Mass General in Boston.  They have melanoma specialists and came highly recommended from others who have had to deal with similar issues.  We travel about 1.5 hours to get there, but obviously that is nothing to get superior care.

The severe side affects are so frightening.  It seems to me that the only reason to give the peg-interfuron a try is so that later you never have to  say:  would have, could have, should have.  We are struggling with the quality of life issues and given Kevin's  inherent special needs, we are not sure how much more we can ask of him.  

Tina, you speak of writing down things to remember them.  This is an everyday task for Kevin.  He lives by his notes.  We are so afraid that if his memory gets any worse that he will lose his independence.  there does not seem to be much research on whether memory can be permanently affected in the long-term by these treatments.  A local radio personality who has been publicly discussing his treatments for his stage III melanoma recently finished his one year of interfuron and is very concerned that his 'fogginess' and 'memory' issures are not returning to normal yet.  

We will be meeting again with the medical onconolgist to discuss the options.  At first he (Dr. Lawrence) was recommending the peg-inf, but after learning more about Kevin and his lifestyle and limitations, he is questioning the long term effects.  

We will continue to research and read, but we are leaning toward a wait and watch decision.  

For those of you have chosen not to do the treatments, was it a good decision for you?

thanks again for all your input.  Any contribution is greatly appreciated.

Deb

I appreciate the responses that we have received so far.  We feel that we are working with a good team.  Kevin is being treated at Mass General in Boston.  They have melanoma specialists and came highly recommended from others who have had to deal with similar issues.  We travel about 1.5 hours to get there, but obviously that is nothing to get superior care.

The severe side affects are so frightening.  It seems to me that the only reason to give the peg-interfuron a try is so that later you never have to  say:  would have, could have, should have.  We are struggling with the quality of life issues and given Kevin's  inherent special needs, we are not sure how much more we can ask of him.  

Tina, you speak of writing down things to remember them.  This is an everyday task for Kevin.  He lives by his notes.  We are so afraid that if his memory gets any worse that he will lose his independence.  there does not seem to be much research on whether memory can be permanently affected in the long-term by these treatments.  A local radio personality who has been publicly discussing his treatments for his stage III melanoma recently finished his one year of interfuron and is very concerned that his 'fogginess' and 'memory' issures are not returning to normal yet.  

We will be meeting again with the medical onconolgist to discuss the options.  At first he (Dr. Lawrence) was recommending the peg-inf, but after learning more about Kevin and his lifestyle and limitations, he is questioning the long term effects.  

We will continue to research and read, but we are leaning toward a wait and watch decision.  

For those of you have chosen not to do the treatments, was it a good decision for you?

thanks again for all your input.  Any contribution is greatly appreciated.

Deb

I appreciate the responses that we have received so far.  We feel that we are working with a good team.  Kevin is being treated at Mass General in Boston.  They have melanoma specialists and came highly recommended from others who have had to deal with similar issues.  We travel about 1.5 hours to get there, but obviously that is nothing to get superior care.

The severe side affects are so frightening.  It seems to me that the only reason to give the peg-interfuron a try is so that later you never have to  say:  would have, could have, should have.  We are struggling with the quality of life issues and given Kevin's  inherent special needs, we are not sure how much more we can ask of him.  

Tina, you speak of writing down things to remember them.  This is an everyday task for Kevin.  He lives by his notes.  We are so afraid that if his memory gets any worse that he will lose his independence.  there does not seem to be much research on whether memory can be permanently affected in the long-term by these treatments.  A local radio personality who has been publicly discussing his treatments for his stage III melanoma recently finished his one year of interfuron and is very concerned that his 'fogginess' and 'memory' issures are not returning to normal yet.  

We will be meeting again with the medical onconolgist to discuss the options.  At first he (Dr. Lawrence) was recommending the peg-inf, but after learning more about Kevin and his lifestyle and limitations, he is questioning the long term effects.  

We will continue to research and read, but we are leaning toward a wait and watch decision.  

For those of you have chosen not to do the treatments, was it a good decision for you?

thanks again for all your input.  Any contribution is greatly appreciated.

Deb