“Free fall” between treatments

Hi Rick it would be helpful to know what kind of Immune therapy your wife is getting. The new PD-1 drugs tend to start working a little faster than Ipi which usuall take up to 3 months to show up on scans. With Pd-1 people are getting responses a lot faster. I had tumor shrinkage by the first set of scans at 12 weeks. In early studies of PD-1 they were able to see reductions by 8 weeks on scans. If you want to do some research on your own there is a really good series on youtube, filmed at the Angeles clinic. Dr. Omid Hamid speaks about new clinical trials that are being looked today. The title to search on youtube is " Future Therapies for Melanoma Education Symposium 2014. Dr. Hamid talks about all the new combination that are being tried today. There are several other videos from different experts in the same series. I hope this was helpful to you and I wish you the best of luck with the treatments. Ed

Hi Rick it would be helpful to know what kind of Immune therapy your wife is getting. The new PD-1 drugs tend to start working a little faster than Ipi which usuall take up to 3 months to show up on scans. With Pd-1 people are getting responses a lot faster. I had tumor shrinkage by the first set of scans at 12 weeks. In early studies of PD-1 they were able to see reductions by 8 weeks on scans. If you want to do some research on your own there is a really good series on youtube, filmed at the Angeles clinic. Dr. Omid Hamid speaks about new clinical trials that are being looked today. The title to search on youtube is " Future Therapies for Melanoma Education Symposium 2014. Dr. Hamid talks about all the new combination that are being tried today. There are several other videos from different experts in the same series. I hope this was helpful to you and I wish you the best of luck with the treatments. Ed

Hi Rick it would be helpful to know what kind of Immune therapy your wife is getting. The new PD-1 drugs tend to start working a little faster than Ipi which usuall take up to 3 months to show up on scans. With Pd-1 people are getting responses a lot faster. I had tumor shrinkage by the first set of scans at 12 weeks. In early studies of PD-1 they were able to see reductions by 8 weeks on scans. If you want to do some research on your own there is a really good series on youtube, filmed at the Angeles clinic. Dr. Omid Hamid speaks about new clinical trials that are being looked today. The title to search on youtube is " Future Therapies for Melanoma Education Symposium 2014. Dr. Hamid talks about all the new combination that are being tried today. There are several other videos from different experts in the same series. I hope this was helpful to you and I wish you the best of luck with the treatments. Ed

Wow. Sorry to hear that. I'm suprised the fevers and sweats are from her disease but like my doc says everyone is different.

Immunotherapy is slow to work. PD-1 tends to work faster than ipi but it is still at least 9 weeks before good things show up on scans. However she might start feeling better in a couple weeks after the first dose or at least I did. I didn't actually realize it until my parents kept saying how much better I looked.

For quick results it is usually the braf meds which you already did the combo. There is a phase 1 trial for ERK which is further up the gene chain that might give good results but I can only imagine what the side affects would be. Probably severe.

For the bone stuff you might want to check out xgeva. It is supposed to strengthen the bones.

When I switched from the combo which didn't shrink anything for me to Merck's extended access program of pd-1 I was scared. I knew in my gut if it didn't work I wouldn't last long enough for another treatment. That was from April 23 to May 21. I think I was going on sheer will power. I know now my parents were very worried because I didn't have much strength and was rather sickly. In my head though I thought I was in great shape just my body hadn't caught up yet. Also right before April 23 we went to Nashville trying to get into that PD1. That trip really messed up my health. When I got back I had 3 days of major fevers, shakes not able to eat much and stuff. My parents said sometimes I was shaking so hard the heavy recliner was shaking and they had to hold me down. That doc would hardly talk about the pd1 just said it was difficult to get into. Ha. I'm still hear 7 months later thanks to keytruda. One of my former co-workers gave me a book called Jesus Today. The lady who wrote it was going through a lot of medical struggles and it really hit home trying to get me into a good mental state every day I read a couple passages. It's kind of like brainwashing myself into having a positive attitude. When a pain or something hits that's the radiation, or pd1 or xgeva working. Who knows what it really is but that's the attitude I have to have or I would go crazy. I just finished reading it a second time today and will start it again tomorrow. So yeah you just gotta keep fighting and get to that one treatment that works for you. No matter how many meds have failed you. You just gotta keep fighting. My dad says it is hell on earth. But others have beat this for years and years so why not me? Why not you too? Never give up. Never surrender.

Artie

 

Wow. Sorry to hear that. I'm suprised the fevers and sweats are from her disease but like my doc says everyone is different.

Immunotherapy is slow to work. PD-1 tends to work faster than ipi but it is still at least 9 weeks before good things show up on scans. However she might start feeling better in a couple weeks after the first dose or at least I did. I didn't actually realize it until my parents kept saying how much better I looked.

For quick results it is usually the braf meds which you already did the combo. There is a phase 1 trial for ERK which is further up the gene chain that might give good results but I can only imagine what the side affects would be. Probably severe.

For the bone stuff you might want to check out xgeva. It is supposed to strengthen the bones.

When I switched from the combo which didn't shrink anything for me to Merck's extended access program of pd-1 I was scared. I knew in my gut if it didn't work I wouldn't last long enough for another treatment. That was from April 23 to May 21. I think I was going on sheer will power. I know now my parents were very worried because I didn't have much strength and was rather sickly. In my head though I thought I was in great shape just my body hadn't caught up yet. Also right before April 23 we went to Nashville trying to get into that PD1. That trip really messed up my health. When I got back I had 3 days of major fevers, shakes not able to eat much and stuff. My parents said sometimes I was shaking so hard the heavy recliner was shaking and they had to hold me down. That doc would hardly talk about the pd1 just said it was difficult to get into. Ha. I'm still hear 7 months later thanks to keytruda. One of my former co-workers gave me a book called Jesus Today. The lady who wrote it was going through a lot of medical struggles and it really hit home trying to get me into a good mental state every day I read a couple passages. It's kind of like brainwashing myself into having a positive attitude. When a pain or something hits that's the radiation, or pd1 or xgeva working. Who knows what it really is but that's the attitude I have to have or I would go crazy. I just finished reading it a second time today and will start it again tomorrow. So yeah you just gotta keep fighting and get to that one treatment that works for you. No matter how many meds have failed you. You just gotta keep fighting. My dad says it is hell on earth. But others have beat this for years and years so why not me? Why not you too? Never give up. Never surrender.

Artie

 

Wow. Sorry to hear that. I'm suprised the fevers and sweats are from her disease but like my doc says everyone is different.

Immunotherapy is slow to work. PD-1 tends to work faster than ipi but it is still at least 9 weeks before good things show up on scans. However she might start feeling better in a couple weeks after the first dose or at least I did. I didn't actually realize it until my parents kept saying how much better I looked.

For quick results it is usually the braf meds which you already did the combo. There is a phase 1 trial for ERK which is further up the gene chain that might give good results but I can only imagine what the side affects would be. Probably severe.

For the bone stuff you might want to check out xgeva. It is supposed to strengthen the bones.

When I switched from the combo which didn't shrink anything for me to Merck's extended access program of pd-1 I was scared. I knew in my gut if it didn't work I wouldn't last long enough for another treatment. That was from April 23 to May 21. I think I was going on sheer will power. I know now my parents were very worried because I didn't have much strength and was rather sickly. In my head though I thought I was in great shape just my body hadn't caught up yet. Also right before April 23 we went to Nashville trying to get into that PD1. That trip really messed up my health. When I got back I had 3 days of major fevers, shakes not able to eat much and stuff. My parents said sometimes I was shaking so hard the heavy recliner was shaking and they had to hold me down. That doc would hardly talk about the pd1 just said it was difficult to get into. Ha. I'm still hear 7 months later thanks to keytruda. One of my former co-workers gave me a book called Jesus Today. The lady who wrote it was going through a lot of medical struggles and it really hit home trying to get me into a good mental state every day I read a couple passages. It's kind of like brainwashing myself into having a positive attitude. When a pain or something hits that's the radiation, or pd1 or xgeva working. Who knows what it really is but that's the attitude I have to have or I would go crazy. I just finished reading it a second time today and will start it again tomorrow. So yeah you just gotta keep fighting and get to that one treatment that works for you. No matter how many meds have failed you. You just gotta keep fighting. My dad says it is hell on earth. But others have beat this for years and years so why not me? Why not you too? Never give up. Never surrender.

Artie

 

I finished Yervoy on Aug 13th and had my first scans Sept 20th and the spots in my lungs are gone and the one in my neck is half it's size..My dr said that things could look worse before getting better with Yervoy, some swelling might happen also..My 2nd scan is on the 15th..Good luck..I'm stage 3 C

I finished Yervoy on Aug 13th and had my first scans Sept 20th and the spots in my lungs are gone and the one in my neck is half it's size..My dr said that things could look worse before getting better with Yervoy, some swelling might happen also..My 2nd scan is on the 15th..Good luck..I'm stage 3 C

I finished Yervoy on Aug 13th and had my first scans Sept 20th and the spots in my lungs are gone and the one in my neck is half it's size..My dr said that things could look worse before getting better with Yervoy, some swelling might happen also..My 2nd scan is on the 15th..Good luck..I'm stage 3 C

My Mom was diagnosed at stage IV last year. We found out later that she had brain mets too. She had gamma knife radiation for the mets on 12/9/13 and Yervoy on the 12th. She had a lot of subcutaneous tumors and they started changing and shrinking 3 or 4 days after her first infusion. At 3 weeks there was a big difference and it was more apparent at 6 weeks. In August the said that her response was far above anything they hoped for. Today they feel she is in the group of responders (92%) from the trials @ 5 years are still NED or stable. -She had 25 brain mets treated with no known cognitive issues. Kinda amazing when I write all this down.

She is the exception to the rule, but the doctors feel that the gamma knife treatment really jump started her immune system, which it has been shown to do. Could your wife be a candidate for this?

I am a firm believer in second opinions all along the way. It really helped her more than once.

Hope any of this helps you.

– I made my Mom tske turmeric and had her take drops of Cibdex CBD drops. Not sure if this helped, but it did not hurt and a recent study showed brain met patients who took CBD’s and had gamma knife radiation did better that thoes who had gamma knife alone.

My Mom was diagnosed at stage IV last year. We found out later that she had brain mets too. She had gamma knife radiation for the mets on 12/9/13 and Yervoy on the 12th. She had a lot of subcutaneous tumors and they started changing and shrinking 3 or 4 days after her first infusion. At 3 weeks there was a big difference and it was more apparent at 6 weeks. In August the said that her response was far above anything they hoped for. Today they feel she is in the group of responders (92%) from the trials @ 5 years are still NED or stable. -She had 25 brain mets treated with no known cognitive issues. Kinda amazing when I write all this down.

She is the exception to the rule, but the doctors feel that the gamma knife treatment really jump started her immune system, which it has been shown to do. Could your wife be a candidate for this?

I am a firm believer in second opinions all along the way. It really helped her more than once.

Hope any of this helps you.

– I made my Mom tske turmeric and had her take drops of Cibdex CBD drops. Not sure if this helped, but it did not hurt and a recent study showed brain met patients who took CBD’s and had gamma knife radiation did better that thoes who had gamma knife alone.

My Mom was diagnosed at stage IV last year. We found out later that she had brain mets too. She had gamma knife radiation for the mets on 12/9/13 and Yervoy on the 12th. She had a lot of subcutaneous tumors and they started changing and shrinking 3 or 4 days after her first infusion. At 3 weeks there was a big difference and it was more apparent at 6 weeks. In August the said that her response was far above anything they hoped for. Today they feel she is in the group of responders (92%) from the trials @ 5 years are still NED or stable. -She had 25 brain mets treated with no known cognitive issues. Kinda amazing when I write all this down.

She is the exception to the rule, but the doctors feel that the gamma knife treatment really jump started her immune system, which it has been shown to do. Could your wife be a candidate for this?

I am a firm believer in second opinions all along the way. It really helped her more than once.

Hope any of this helps you.

– I made my Mom tske turmeric and had her take drops of Cibdex CBD drops. Not sure if this helped, but it did not hurt and a recent study showed brain met patients who took CBD’s and had gamma knife radiation did better that thoes who had gamma knife alone.