› Forums › General Melanoma Community › Chemo success anyone?
- This topic has 48 replies, 7 voices, and was last updated 11 years, 7 months ago by
MeNDave.
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- September 20, 2012 at 3:59 pm
Hi everyone.
I recently completed 6 weeks of Temodar and am going for PET scan tomorrow. From the looks of things, I've had a partial response (so what's new?)
I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial. You never know, though. since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.
Hi everyone.
I recently completed 6 weeks of Temodar and am going for PET scan tomorrow. From the looks of things, I've had a partial response (so what's new?)
I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial. You never know, though. since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.
Dr. Wolchok has said that we'd talk about adding other chemo drug(s) or switching regimins, so i'd l'm looking for any positive experience with Temodar and other chemo drug combos or other combos that have worked, even temporarily for people.
Thanks!
karen
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- September 20, 2012 at 4:34 pm
Karen,
You are very lucky if you did get a response with chemo.
Based on this article, it explain "why" melanoma cells are resistant to chemo!
http://www.sciencedaily.com/releases/2012/09/120917132351.htm
Good Luck,
Jimmy
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- September 20, 2012 at 4:34 pm
Karen,
You are very lucky if you did get a response with chemo.
Based on this article, it explain "why" melanoma cells are resistant to chemo!
http://www.sciencedaily.com/releases/2012/09/120917132351.htm
Good Luck,
Jimmy
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- September 20, 2012 at 4:34 pm
Karen,
You are very lucky if you did get a response with chemo.
Based on this article, it explain "why" melanoma cells are resistant to chemo!
http://www.sciencedaily.com/releases/2012/09/120917132351.htm
Good Luck,
Jimmy
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- September 20, 2012 at 9:53 pm
Most of us are waiting on and Anti pd 1 trial…. With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable. They added the chemo after he was on Mek by itself for 11 months and progressed just a little. All together over 30 months and except for a few bumps he is still hanging in there.
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- September 20, 2012 at 9:53 pm
Most of us are waiting on and Anti pd 1 trial…. With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable. They added the chemo after he was on Mek by itself for 11 months and progressed just a little. All together over 30 months and except for a few bumps he is still hanging in there.
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- September 20, 2012 at 9:53 pm
Most of us are waiting on and Anti pd 1 trial…. With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable. They added the chemo after he was on Mek by itself for 11 months and progressed just a little. All together over 30 months and except for a few bumps he is still hanging in there.
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- September 21, 2012 at 8:09 am
Moffitt has anti pd 1 trials open…
As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.
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- September 21, 2012 at 8:09 am
Moffitt has anti pd 1 trials open…
As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.
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- September 21, 2012 at 8:09 am
Moffitt has anti pd 1 trials open…
As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.
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- September 20, 2012 at 10:10 pm
My husband is currently being treated with a combination of carboplatin and paclitaxol. He's had an amazing response. He has mucosal melanoma of the nasal cavity, stage 3c. Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May. Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck. The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge. Because it was so agressive something had to be done fast. so they went with chemo. After the first treatment, I watched the tumors shrink as fast as they had grown. The PA was amazed and said they don't usually see that kind of response. After round two, everything we could see externally is gone. We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works. We can only hope and pray. As for side effects, he has done very well. He missed work the second day after the first treatment because of fatigue and half of the third. Since then, he has worked most of the time except for when he is at an appointment somewhere. He had a little joint pain after the second treatment but it wasn't bad and didn't last long. He's had a bit of neuropathy in his hands. But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week. There's not a lot of options for him so I hope this works. He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative. Maybe yervoy if needed. Good luck to you, and everyone.
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- September 20, 2012 at 10:10 pm
My husband is currently being treated with a combination of carboplatin and paclitaxol. He's had an amazing response. He has mucosal melanoma of the nasal cavity, stage 3c. Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May. Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck. The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge. Because it was so agressive something had to be done fast. so they went with chemo. After the first treatment, I watched the tumors shrink as fast as they had grown. The PA was amazed and said they don't usually see that kind of response. After round two, everything we could see externally is gone. We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works. We can only hope and pray. As for side effects, he has done very well. He missed work the second day after the first treatment because of fatigue and half of the third. Since then, he has worked most of the time except for when he is at an appointment somewhere. He had a little joint pain after the second treatment but it wasn't bad and didn't last long. He's had a bit of neuropathy in his hands. But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week. There's not a lot of options for him so I hope this works. He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative. Maybe yervoy if needed. Good luck to you, and everyone.
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- September 20, 2012 at 10:10 pm
My husband is currently being treated with a combination of carboplatin and paclitaxol. He's had an amazing response. He has mucosal melanoma of the nasal cavity, stage 3c. Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May. Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck. The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge. Because it was so agressive something had to be done fast. so they went with chemo. After the first treatment, I watched the tumors shrink as fast as they had grown. The PA was amazed and said they don't usually see that kind of response. After round two, everything we could see externally is gone. We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works. We can only hope and pray. As for side effects, he has done very well. He missed work the second day after the first treatment because of fatigue and half of the third. Since then, he has worked most of the time except for when he is at an appointment somewhere. He had a little joint pain after the second treatment but it wasn't bad and didn't last long. He's had a bit of neuropathy in his hands. But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week. There's not a lot of options for him so I hope this works. He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative. Maybe yervoy if needed. Good luck to you, and everyone.
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- September 24, 2012 at 2:40 am
Dave had a good response to carbo/taxol also. Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice. Dave took the day after treatment off to rest, but worked full time still. Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.
I hope all goes well for you 🙂
Maria
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- September 24, 2012 at 2:40 am
Dave had a good response to carbo/taxol also. Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice. Dave took the day after treatment off to rest, but worked full time still. Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.
I hope all goes well for you 🙂
Maria
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- September 24, 2012 at 2:40 am
Dave had a good response to carbo/taxol also. Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice. Dave took the day after treatment off to rest, but worked full time still. Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.
I hope all goes well for you 🙂
Maria
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- September 21, 2012 at 12:14 am
Karen,
Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months.
Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones.
For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea.
I really hope that whatever you choose helps!
Michelle
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- September 21, 2012 at 12:14 am
Karen,
Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months.
Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones.
For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea.
I really hope that whatever you choose helps!
Michelle
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- September 21, 2012 at 12:14 am
Karen,
Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months.
Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones.
For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea.
I really hope that whatever you choose helps!
Michelle
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- September 21, 2012 at 7:28 pm
Thank you Michelle. I so appreciate your input and good wishes. How are you doing?-
- September 21, 2012 at 11:55 pm
Karen,
All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing.
For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.
We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again.
The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help.
And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing.
I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.
Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! 🙂
Michelle
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- September 21, 2012 at 11:55 pm
Karen,
All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing.
For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.
We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again.
The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help.
And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing.
I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.
Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! 🙂
Michelle
-
- September 21, 2012 at 11:55 pm
Karen,
All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing.
For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.
We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again.
The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help.
And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing.
I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.
Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! 🙂
Michelle
-
- September 23, 2012 at 4:07 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen -
- September 23, 2012 at 4:07 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen -
- September 23, 2012 at 4:07 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen -
- September 23, 2012 at 4:08 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen -
- September 23, 2012 at 4:08 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen -
- September 23, 2012 at 4:08 pm
Dear Michelle,I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.
You are one terrific lady and I thank you for your support.
Take good care,
karen
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