ipilimumab and nivolumab – Trial

Is sinonasal melanoma a type of mucosal melanoma or is it cutaneous melanoma? Has your wide's tumor been tested for teh BRAF, NRAS or c-KIT mutations? 

I have not participated in any clinical trials, but hopefully others here can answer your questions. However, you might be interested in viewing this webinar by Dr. Jeff Wolchok about diferent immunotherapies:

http://melanomainternational.org/webinar/2013/02/strategies-in-immunotherapy/?done=1#.UwI66Cgq8wE

Also, be sure to read this recent post about Yervoy support: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/yervoy-ipilimumab-education

Is sinonasal melanoma a type of mucosal melanoma or is it cutaneous melanoma? Has your wide's tumor been tested for teh BRAF, NRAS or c-KIT mutations? 

I have not participated in any clinical trials, but hopefully others here can answer your questions. However, you might be interested in viewing this webinar by Dr. Jeff Wolchok about diferent immunotherapies:

http://melanomainternational.org/webinar/2013/02/strategies-in-immunotherapy/?done=1#.UwI66Cgq8wE

Also, be sure to read this recent post about Yervoy support: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/yervoy-ipilimumab-education

Is sinonasal melanoma a type of mucosal melanoma or is it cutaneous melanoma? Has your wide's tumor been tested for teh BRAF, NRAS or c-KIT mutations? 

I have not participated in any clinical trials, but hopefully others here can answer your questions. However, you might be interested in viewing this webinar by Dr. Jeff Wolchok about diferent immunotherapies:

http://melanomainternational.org/webinar/2013/02/strategies-in-immunotherapy/?done=1#.UwI66Cgq8wE

Also, be sure to read this recent post about Yervoy support: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/yervoy-ipilimumab-education

Hi Fernando,

My husband was stage IV and was on a clinical trial of 10 mg/kg of Ipi and GM-CSF.  He has been cancer (NED) no evidence of disease for almost 1 1/2 years now.  The other arm of his trial was to just get the 10 mg/kg of Ipi.  The GM-CSF is self administered shots 14 days on and 7 days off.  He just quit the trial in Dec. 2013.  His had a maintenance phase where the Ipi he got every 3 weeks for the first 12 weeks and then once every 12 weeks until he dropped out.  

His side effects were minimal with lots of itching, rash, fatigue, his eye brows turned white and his beard is mostly white (the doctor was thrilled when the eyelashes started turning white as he said was a sign it was working), he lost pigmentation of the skin on the face and down to the collar bone and he has to take 7.5 mg of prednisone a day as his body quit manufacturing its own.  You can read more about him on his profile page if you would like.

I hope all goes well for your wife.

Judy (loving wife of Gene Stage IV and now NED)

Hi Fernando,

My husband was stage IV and was on a clinical trial of 10 mg/kg of Ipi and GM-CSF.  He has been cancer (NED) no evidence of disease for almost 1 1/2 years now.  The other arm of his trial was to just get the 10 mg/kg of Ipi.  The GM-CSF is self administered shots 14 days on and 7 days off.  He just quit the trial in Dec. 2013.  His had a maintenance phase where the Ipi he got every 3 weeks for the first 12 weeks and then once every 12 weeks until he dropped out.  

His side effects were minimal with lots of itching, rash, fatigue, his eye brows turned white and his beard is mostly white (the doctor was thrilled when the eyelashes started turning white as he said was a sign it was working), he lost pigmentation of the skin on the face and down to the collar bone and he has to take 7.5 mg of prednisone a day as his body quit manufacturing its own.  You can read more about him on his profile page if you would like.

I hope all goes well for your wife.

Judy (loving wife of Gene Stage IV and now NED)

Hi Fernando,

My husband was stage IV and was on a clinical trial of 10 mg/kg of Ipi and GM-CSF.  He has been cancer (NED) no evidence of disease for almost 1 1/2 years now.  The other arm of his trial was to just get the 10 mg/kg of Ipi.  The GM-CSF is self administered shots 14 days on and 7 days off.  He just quit the trial in Dec. 2013.  His had a maintenance phase where the Ipi he got every 3 weeks for the first 12 weeks and then once every 12 weeks until he dropped out.  

His side effects were minimal with lots of itching, rash, fatigue, his eye brows turned white and his beard is mostly white (the doctor was thrilled when the eyelashes started turning white as he said was a sign it was working), he lost pigmentation of the skin on the face and down to the collar bone and he has to take 7.5 mg of prednisone a day as his body quit manufacturing its own.  You can read more about him on his profile page if you would like.

I hope all goes well for your wife.

Judy (loving wife of Gene Stage IV and now NED)

Fernando,

Although your doctor was correct in his statement, "everyone is different", that was hardly helpful. I'm curious as to the different arms of your wife's trial. Is it Ipi OR Nivo, or is there an arm with a combination also.

Many folks tolerate both these treatments very well. Most will probably experience at least some fatigue.  Of the two drugs I think it's safe to say the nivo is a little better tolerated than the Ipi but since you probably won't know which drug you are on that may not be helpful info.

The more common side effects for Ipi are diarhea and fatigue.  Your oncologist should advise you on the importance of staying on top of the diarhea.  It can become quit serious if left untreated.  Not uncoommon for folks to experience rashes and itching.  Some experience the whitening patches of the skin and hair like Judy described.  Some like me experience a side effect called hypophysitis.  That is a auto-immune reaction that causes the pituitary gland to swell and inflame.  May start off as mild headaches that slowly progress to more painful headaches over time or may start off painful right off the bat.  Again that one should be treated as soon as possible to prevent permanent problems with the pituitary gland. Another friend of mine experienced some quite severe liver toxicities but that's pretty rare.

I've had very few side effects on Nivo.  I think some of the same side effects listed above are possible but they don't seem to be experienced as often with Nivo. 

The consent forms for these trials listing all the possible side effects you may have are really worrisome.  Just remember many folks have very mild side effects if any.  It is however important to stay alert and in tune with what's going on with your body and definitely read all the possible side effects list on the consent forms so you know what to look for.  You can also do a search on here for ipi and nivo side effects.  There have been several threads started lately from folks just starting the treatment describing their side effects.  Good luck with your wife's treatment.  Where are you being treated?

Brian

Fernando,

Although your doctor was correct in his statement, "everyone is different", that was hardly helpful. I'm curious as to the different arms of your wife's trial. Is it Ipi OR Nivo, or is there an arm with a combination also.

Many folks tolerate both these treatments very well. Most will probably experience at least some fatigue.  Of the two drugs I think it's safe to say the nivo is a little better tolerated than the Ipi but since you probably won't know which drug you are on that may not be helpful info.

The more common side effects for Ipi are diarhea and fatigue.  Your oncologist should advise you on the importance of staying on top of the diarhea.  It can become quit serious if left untreated.  Not uncoommon for folks to experience rashes and itching.  Some experience the whitening patches of the skin and hair like Judy described.  Some like me experience a side effect called hypophysitis.  That is a auto-immune reaction that causes the pituitary gland to swell and inflame.  May start off as mild headaches that slowly progress to more painful headaches over time or may start off painful right off the bat.  Again that one should be treated as soon as possible to prevent permanent problems with the pituitary gland. Another friend of mine experienced some quite severe liver toxicities but that's pretty rare.

I've had very few side effects on Nivo.  I think some of the same side effects listed above are possible but they don't seem to be experienced as often with Nivo. 

The consent forms for these trials listing all the possible side effects you may have are really worrisome.  Just remember many folks have very mild side effects if any.  It is however important to stay alert and in tune with what's going on with your body and definitely read all the possible side effects list on the consent forms so you know what to look for.  You can also do a search on here for ipi and nivo side effects.  There have been several threads started lately from folks just starting the treatment describing their side effects.  Good luck with your wife's treatment.  Where are you being treated?

Brian

Fernando,

Although your doctor was correct in his statement, "everyone is different", that was hardly helpful. I'm curious as to the different arms of your wife's trial. Is it Ipi OR Nivo, or is there an arm with a combination also.

Many folks tolerate both these treatments very well. Most will probably experience at least some fatigue.  Of the two drugs I think it's safe to say the nivo is a little better tolerated than the Ipi but since you probably won't know which drug you are on that may not be helpful info.

The more common side effects for Ipi are diarhea and fatigue.  Your oncologist should advise you on the importance of staying on top of the diarhea.  It can become quit serious if left untreated.  Not uncoommon for folks to experience rashes and itching.  Some experience the whitening patches of the skin and hair like Judy described.  Some like me experience a side effect called hypophysitis.  That is a auto-immune reaction that causes the pituitary gland to swell and inflame.  May start off as mild headaches that slowly progress to more painful headaches over time or may start off painful right off the bat.  Again that one should be treated as soon as possible to prevent permanent problems with the pituitary gland. Another friend of mine experienced some quite severe liver toxicities but that's pretty rare.

I've had very few side effects on Nivo.  I think some of the same side effects listed above are possible but they don't seem to be experienced as often with Nivo. 

The consent forms for these trials listing all the possible side effects you may have are really worrisome.  Just remember many folks have very mild side effects if any.  It is however important to stay alert and in tune with what's going on with your body and definitely read all the possible side effects list on the consent forms so you know what to look for.  You can also do a search on here for ipi and nivo side effects.  There have been several threads started lately from folks just starting the treatment describing their side effects.  Good luck with your wife's treatment.  Where are you being treated?

Brian