jkall

Thank you so much for this feedback.  He will be on the Yervoy-Opdivo combination.  I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either.  But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.

The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months.  So I believe we are still in the stage of watching things.  I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression.  I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.

He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy.  I think we are in the territory of the unknown here with the extent of his disease last August.  Perhaps it would be good to get a second opinion.

Thank you again for this discussion.  I  am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated. 

Jill

Thank you so much for this feedback.  He will be on the Yervoy-Opdivo combination.  I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either.  But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.

The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months.  So I believe we are still in the stage of watching things.  I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression.  I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.

He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy.  I think we are in the territory of the unknown here with the extent of his disease last August.  Perhaps it would be good to get a second opinion.

Thank you again for this discussion.  I  am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated. 

Jill

Thank you so much for this feedback.  He will be on the Yervoy-Opdivo combination.  I have read that a small number have a complete response to the Tafinlar/mekinist for 1-2 years, and I don't want to waste any of this period either.  But the studies seem to indicate the longest survivors did not even have brain metastasis, let alone the leptomeningeal involvement my son had.

The Dr. says he personally has not had people respond to the Taf/Mek combination for over 6-9 months–my son has been on them so far for 4 months.  So I believe we are still in the stage of watching things.  I agree if he goes on to have a complete response, I would want him to have more time and watch for even minimal progression.  I think one factor is that my son actually came back from being so sick, there is concern that when/if he starts progressing there may not be enough time to get the Yervoy Opdivo started and having an effect.

He is just now able to finally wean off steroids (due to brain swelling) to be able to use the immunotherapy.  I think we are in the territory of the unknown here with the extent of his disease last August.  Perhaps it would be good to get a second opinion.

Thank you again for this discussion.  I  am the person doing the reading/researching and this forum is helpful to hear others' experiences. Thank you also for your prayers–they are most appreciated. 

Jill