› Forums › Mucosal Melanoma Community › Treatment Options Stage 3
- This topic has 12 replies, 4 voices, and was last updated 12 years, 2 months ago by
NYKaren.
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- September 22, 2012 at 2:57 am
Well, here I am again with more questions. My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil. Plus he feels good. The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him. Some of you have pointed out to me that all too often the response is only temporary. So, what might plan B be? He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday
Well, here I am again with more questions. My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil. Plus he feels good. The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him. Some of you have pointed out to me that all too often the response is only temporary. So, what might plan B be? He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday primary lung cancer. Yervoy was the one they were going to try but because his tumors were so extremely aggressive they went with the chemo to get things under control and then move on to something else. I just checked our insurance company's formulary and Yervoy is not covered. There is absolutely NO WAY that we can pay for it. The expenses are hard enough as it is already. Anyone have any luck getting the insurance to pay somehow? We have PPO Blue – Highmark Blue Cross Blue/Shield. If Yerovy is not an option then what in the world is left for my husband? Initally they were going to do interferon and radiation but that plan went out the window when the tumors popped up overnight and took off like wild fire. The radiologist who is treating the lung cancer mentioned that he may, at some point, radiate the neck area where the tumors popped up. Honestly, I don't know how all of you good people handle this. It's been 5 months and I'm still a basket case. Thankfully, my husband is a "go with the flow" type of guy and is handling this far better than I. I'm scared out of my mind but I try my darndest not to let him know.
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- September 22, 2012 at 1:59 pm
Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.
Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.
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- September 22, 2012 at 1:59 pm
Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.
Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.
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- September 22, 2012 at 1:59 pm
Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.
Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.
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- September 22, 2012 at 5:25 pm
You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug. Your healthcare provider can start the process by going to http://www.destinationaccess.com or by calling 800 861-0048.
If you have problems with this process let me know and I will contact the company to get some internal help.
Hopefully this won't be needed and your huisband will continue to respond to the chemo.
Tim–MRF
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- September 22, 2012 at 5:25 pm
You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug. Your healthcare provider can start the process by going to http://www.destinationaccess.com or by calling 800 861-0048.
If you have problems with this process let me know and I will contact the company to get some internal help.
Hopefully this won't be needed and your huisband will continue to respond to the chemo.
Tim–MRF
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- September 22, 2012 at 5:25 pm
You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug. Your healthcare provider can start the process by going to http://www.destinationaccess.com or by calling 800 861-0048.
If you have problems with this process let me know and I will contact the company to get some internal help.
Hopefully this won't be needed and your huisband will continue to respond to the chemo.
Tim–MRF
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- September 22, 2012 at 9:10 pm
Possibly this could be plan B?
Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online
Best wishes,
Gene
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- September 23, 2012 at 4:50 pm
Hi there,
Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
All the best,
karen. -
- September 23, 2012 at 4:50 pm
Hi there,
Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
All the best,
karen. -
- September 23, 2012 at 4:50 pm
Hi there,
Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
All the best,
karen.
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- September 22, 2012 at 9:10 pm
Possibly this could be plan B?
Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online
Best wishes,
Gene
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- September 22, 2012 at 9:10 pm
Possibly this could be plan B?
Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online
Best wishes,
Gene
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Tagged: mucosal melanoma
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