Latest Scan

I get my 4th single dose of nivo friday and then go back to the combo for the maintanance period. I also have vitiligo on the arms. The 2 scans I have had were both very promising and I guess the best thing was there were no new spots anywhere. The vitiligo started after the first single dose of nivo and I have had dry mouth issues for about 9 weeks now. I take both of these side effects with happiness, I know, wierd but I see it as my body is still reacting to the drugs and a good thing. I guess I have tolerated it better than some as I still go to work everyday. So many people ask me why I am not on disability but I have no problem working. I really cant wait to get both drugs again as I know it will only help.

I get my 4th single dose of nivo friday and then go back to the combo for the maintanance period. I also have vitiligo on the arms. The 2 scans I have had were both very promising and I guess the best thing was there were no new spots anywhere. The vitiligo started after the first single dose of nivo and I have had dry mouth issues for about 9 weeks now. I take both of these side effects with happiness, I know, wierd but I see it as my body is still reacting to the drugs and a good thing. I guess I have tolerated it better than some as I still go to work everyday. So many people ask me why I am not on disability but I have no problem working. I really cant wait to get both drugs again as I know it will only help.

I get my 4th single dose of nivo friday and then go back to the combo for the maintanance period. I also have vitiligo on the arms. The 2 scans I have had were both very promising and I guess the best thing was there were no new spots anywhere. The vitiligo started after the first single dose of nivo and I have had dry mouth issues for about 9 weeks now. I take both of these side effects with happiness, I know, wierd but I see it as my body is still reacting to the drugs and a good thing. I guess I have tolerated it better than some as I still go to work everyday. So many people ask me why I am not on disability but I have no problem working. I really cant wait to get both drugs again as I know it will only help.

Hello Aaron,

Yes it is possible to get a really large shrinkage and then slow down a little.  It took my husband over a year to reach the NED status but he has been NED for almost 4.5 years now.

On another note, my husbands eyebrows started turning white (he has very dark hair and eyebrows) and his oncologist said this is good news.  Then he got vitiligo on his face and neck down to the collar bone and the doctor saw some white spots on his arms and he said this is good news as well.  He said some with a response to Ipi get the white eyebrows and sometimes even a white streak down the top of the head (which he never got).  But he still has the white eyebrows.  He says he will accept it as it was a small price to pay for NED.

Don't give up and get down when you have a slow period as maybe it is vamping to attack more melanoma.  Good luck.

Judy (loving wife of Gene Stage IV and now NED for almost 4.5 years)

Hello Aaron,

Yes it is possible to get a really large shrinkage and then slow down a little.  It took my husband over a year to reach the NED status but he has been NED for almost 4.5 years now.

On another note, my husbands eyebrows started turning white (he has very dark hair and eyebrows) and his oncologist said this is good news.  Then he got vitiligo on his face and neck down to the collar bone and the doctor saw some white spots on his arms and he said this is good news as well.  He said some with a response to Ipi get the white eyebrows and sometimes even a white streak down the top of the head (which he never got).  But he still has the white eyebrows.  He says he will accept it as it was a small price to pay for NED.

Don't give up and get down when you have a slow period as maybe it is vamping to attack more melanoma.  Good luck.

Judy (loving wife of Gene Stage IV and now NED for almost 4.5 years)

Hello Aaron,

Yes it is possible to get a really large shrinkage and then slow down a little.  It took my husband over a year to reach the NED status but he has been NED for almost 4.5 years now.

On another note, my husbands eyebrows started turning white (he has very dark hair and eyebrows) and his oncologist said this is good news.  Then he got vitiligo on his face and neck down to the collar bone and the doctor saw some white spots on his arms and he said this is good news as well.  He said some with a response to Ipi get the white eyebrows and sometimes even a white streak down the top of the head (which he never got).  But he still has the white eyebrows.  He says he will accept it as it was a small price to pay for NED.

Don't give up and get down when you have a slow period as maybe it is vamping to attack more melanoma.  Good luck.

Judy (loving wife of Gene Stage IV and now NED for almost 4.5 years)

Aaron-

I'm happy to get there was regression, that is a good thing! Also nothing new has showed up which is another positive. That being said I can understand your disappointment and you're totally justified in feeling that. Early on in my fight I had quick results but the last 7-8 months haave beeen difficult with setbacks. I just finished an adoptive cell therapy at MD Anderson and was hoping to see great results in a hurry…not happening so I'm frustrated, disappointed….all of the above. I've done IL-2, ipi and PD-1…developed some vitiligo yet had progression. Though my oncologist at MD Anderson as well as my local oncologist have said that response times are different and some people don't  respond until months later. The key is your immune system building memory. If that's happening then you'll eventually be rendered NED. We'll pray for that! Wishing you continued successs.

Josh

Aaron-

I'm happy to get there was regression, that is a good thing! Also nothing new has showed up which is another positive. That being said I can understand your disappointment and you're totally justified in feeling that. Early on in my fight I had quick results but the last 7-8 months haave beeen difficult with setbacks. I just finished an adoptive cell therapy at MD Anderson and was hoping to see great results in a hurry…not happening so I'm frustrated, disappointed….all of the above. I've done IL-2, ipi and PD-1…developed some vitiligo yet had progression. Though my oncologist at MD Anderson as well as my local oncologist have said that response times are different and some people don't  respond until months later. The key is your immune system building memory. If that's happening then you'll eventually be rendered NED. We'll pray for that! Wishing you continued successs.

Josh

Aaron-

I'm happy to get there was regression, that is a good thing! Also nothing new has showed up which is another positive. That being said I can understand your disappointment and you're totally justified in feeling that. Early on in my fight I had quick results but the last 7-8 months haave beeen difficult with setbacks. I just finished an adoptive cell therapy at MD Anderson and was hoping to see great results in a hurry…not happening so I'm frustrated, disappointed….all of the above. I've done IL-2, ipi and PD-1…developed some vitiligo yet had progression. Though my oncologist at MD Anderson as well as my local oncologist have said that response times are different and some people don't  respond until months later. The key is your immune system building memory. If that's happening then you'll eventually be rendered NED. We'll pray for that! Wishing you continued successs.

Josh

Aaron, certainly natural to hope for NED, but until you get there, stable disease is the place to be. 

Aaron, certainly natural to hope for NED, but until you get there, stable disease is the place to be. 

Aaron, certainly natural to hope for NED, but until you get there, stable disease is the place to be.