› Forums › General Melanoma Community › New to Stage IV – advise please
- This topic has 57 replies, 10 voices, and was last updated 7 years, 7 months ago by
stotesbery.
- Post
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- August 27, 2016 at 3:10 pm
Just wanted to reach out and hope to hear from others dealing with Stage IV as I am devastated and heartbroken. First diagnosed as Stage 1A on L thigh in Feb 2008 and had wide excision wih no other treatment. Almost exactly eight years later found a lump in L groin and found to be metastatic melanoma. Had all superficial inguinal nodes removed and three were positive for melanoma and extranodal extension. Had radiation to that area and started Yervoy at 3 mg dose in adjuvant setting (Stage lllC). After first dose of Yervoy found a lump on right upper back but negative for melanoma. Had two more doses of Yervoy and the lump grew back and is now testing positive for melanoma. Awaiting PET scan on Monday. I am BRAF negative. I am completely devastated by how quickly I progressed from Stage lllC to Stage lV while on Yervoy. I live in South Dakota and have been fighting insurance to get a second opinion but have been denied. I don't have access to top melanoma specialists and feel desperate for some advice about what to do next. I just feel like I have had the worst case scenario at every turn this year and I am terrified to find out what the upcoming PET will show. Any advise will be appreciated – thank you!
- Replies
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- August 27, 2016 at 4:16 pm
Sorry for all your challenges Stotes. Stinks insurance is not being cooperative. If you are indeed diagnosed as stage IV now and you have unresectable disease you would most definitely be elligible for a anti-PD1 drug (either Opdivo or Keytruda). I don't think even your insurance could deny that. The Anti PD1 drugs have a much higher success rate than Yervoy and usually less side effects. I would definitely discuss that option with your doctor. You also might consider a trial. This one looks like a good one in Sioux City on clinicaltrials.org.
https://clinicaltrials.gov/ct2/show/NCT02327078?term=melanoma&recr=Open&state1=NA%3AUS%3ASD&rank=7
The good thing about trials is you are with doctors who are usually on the leading edge of treatment. I think with obamacare all insurance has to cover trials so I think your insurance would have to support that treatment.
Good luck.
Brian
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- August 27, 2016 at 4:16 pm
Sorry for all your challenges Stotes. Stinks insurance is not being cooperative. If you are indeed diagnosed as stage IV now and you have unresectable disease you would most definitely be elligible for a anti-PD1 drug (either Opdivo or Keytruda). I don't think even your insurance could deny that. The Anti PD1 drugs have a much higher success rate than Yervoy and usually less side effects. I would definitely discuss that option with your doctor. You also might consider a trial. This one looks like a good one in Sioux City on clinicaltrials.org.
https://clinicaltrials.gov/ct2/show/NCT02327078?term=melanoma&recr=Open&state1=NA%3AUS%3ASD&rank=7
The good thing about trials is you are with doctors who are usually on the leading edge of treatment. I think with obamacare all insurance has to cover trials so I think your insurance would have to support that treatment.
Good luck.
Brian
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- August 27, 2016 at 10:55 pm
Brian – Thank you for your reply and advise. I appreciate it so much. It is comforting to be able to talk with people who can understand and relate to all of this. Sometimes I just feel so alone and like no one can understand. I am familiar with the PD-1 inhibitors and had wished I could have been on them from the beginning but they are not approved for stage lllC yet. I am also aware of the Ipi/Nivo combo. Thank you also for the clinical trial link. I am very interested in that trial and has read some promising info about with less likelihood of sever side effects. I noticed there is a place in Fargo, ND which is only here hours from here. I will not give up with the insurance and did successfully appeal to go to an out of network MD (that they pay for) but was denied a second opinion at Mauo clinic and MD Anderson. I have already initiated a second appeal and will enlist the help of my Oncologist who has been great. Thank you again!
Christal
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- August 27, 2016 at 10:55 pm
Brian – Thank you for your reply and advise. I appreciate it so much. It is comforting to be able to talk with people who can understand and relate to all of this. Sometimes I just feel so alone and like no one can understand. I am familiar with the PD-1 inhibitors and had wished I could have been on them from the beginning but they are not approved for stage lllC yet. I am also aware of the Ipi/Nivo combo. Thank you also for the clinical trial link. I am very interested in that trial and has read some promising info about with less likelihood of sever side effects. I noticed there is a place in Fargo, ND which is only here hours from here. I will not give up with the insurance and did successfully appeal to go to an out of network MD (that they pay for) but was denied a second opinion at Mauo clinic and MD Anderson. I have already initiated a second appeal and will enlist the help of my Oncologist who has been great. Thank you again!
Christal
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- August 27, 2016 at 10:55 pm
Brian – Thank you for your reply and advise. I appreciate it so much. It is comforting to be able to talk with people who can understand and relate to all of this. Sometimes I just feel so alone and like no one can understand. I am familiar with the PD-1 inhibitors and had wished I could have been on them from the beginning but they are not approved for stage lllC yet. I am also aware of the Ipi/Nivo combo. Thank you also for the clinical trial link. I am very interested in that trial and has read some promising info about with less likelihood of sever side effects. I noticed there is a place in Fargo, ND which is only here hours from here. I will not give up with the insurance and did successfully appeal to go to an out of network MD (that they pay for) but was denied a second opinion at Mauo clinic and MD Anderson. I have already initiated a second appeal and will enlist the help of my Oncologist who has been great. Thank you again!
Christal
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- August 27, 2016 at 4:16 pm
Sorry for all your challenges Stotes. Stinks insurance is not being cooperative. If you are indeed diagnosed as stage IV now and you have unresectable disease you would most definitely be elligible for a anti-PD1 drug (either Opdivo or Keytruda). I don't think even your insurance could deny that. The Anti PD1 drugs have a much higher success rate than Yervoy and usually less side effects. I would definitely discuss that option with your doctor. You also might consider a trial. This one looks like a good one in Sioux City on clinicaltrials.org.
https://clinicaltrials.gov/ct2/show/NCT02327078?term=melanoma&recr=Open&state1=NA%3AUS%3ASD&rank=7
The good thing about trials is you are with doctors who are usually on the leading edge of treatment. I think with obamacare all insurance has to cover trials so I think your insurance would have to support that treatment.
Good luck.
Brian
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- August 27, 2016 at 4:16 pm
Hi Stotes,
So sorry for what you are going through and don't blame you for feeling devastated. However, you are in good company here…but no matter how much melanoma sucks….and it does….great big green hairy wizard balls!!!…we keep on trucking and you can too!!! Still sucks though!
I was first diagnosed at Stage IIIb in 2003. No treatment options back then though. Progressed to Stage IV in 2010. Had nivolumab (that's Opdivo, one of the two anti-PD1 products available now…the other is Keytruda) for 2 1/2 years after lung surgery and SRS (that's stereotactic radiation) to a brain met. Just had scans this week and currently I am still NED (no evidence of disease) 13 years after my diagnosis. I know I am lucky. Others here have been and are currently going through much more…but they are still here….fighting and helping.
Get your scan results so that you can see what you are dealing with. You DESERVE a second opinion if you want one….and your doc….if they have any integretity and are worth their salt….should HELP you APPEAL the insurance decision refusing one. A melanoma specialist is crucial when dealing with melanoma. However, sounds like your current doc did well in getting you radiation and ipi initially…even though it didn't turn out as you had hoped. You are certainly a candidate for anti-PD1 (both products work about the same with the same response rates) now. Hang in there. Ask questions. Yell and scream as needed. There are lots of sweet and smart peeps here. Hang in there. Celeste
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- August 27, 2016 at 11:18 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
-
- August 27, 2016 at 11:18 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
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- August 28, 2016 at 12:30 am
Hey Christal,
Glad you could laugh. Sometimes you just have to!!! To the docs you listed – all awesome!!! I have to admit a bit of partiality to Weber because he has been my doc since 2010 but also because I know for a fact that when asked what is best when folks seek his help as a second opinion, he has recommended treatment plans at institutions other than his own, if that is what he thinks best for the patient. However, Ribas and Wolchok have great reps as well.
As far as epacadostat, an IDO inhibitor: Here's what I've got –
Here's a link to a post I put up earlier this year from a webinar Weber gave: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
On the third topic down he addressed epacadostat and pembro where melanoma patients (albeit in small numbers) had a 63% ORR and those pre-treated still exhibited a 56% ORR and the combo did not produce side effects worse than with pembro alone.
Here's the tricky part – getting into a trial. The trial Brian mentioned above is with epacadostat and nivo. So that sounds like it should be as good as the one noted by Weber. At one place it says ipi is an exclusion, at another it looks like if that was your first and only treatment it is ok. It also notes that melanoma patients require "documentation of V600E activating BRAF mutation status, or consent to…testing during screening". So….I don't know it that means you have to be BRAF positive or they just want to document your status whatever it may be. I can't see why you would need to be BRAF positive for this trial. Sites include Sioux City and Fargo, as you noted.
There is also this trial: https://clinicaltrials.gov/ct2/show/NCT02752074
Here you get pembro with epadadostat or pembro alone. It seems to be still recruiting. There are 112 sites…including Montana, Iowa, Nevada. It looks like you meet the criteria. You may have had ipi as adjuvant. No mention of BRAF status. Brain tumors are not excluded….just say'n.
Bottom line. See what you're dealing with after your PET. See one of the guys you listed. CALL ANY trial you are interested in!!! All they can say is no. Plus there are other promising things in the post from Weber's webinar. Hang in there. Hope this helps. Celeste
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- August 28, 2016 at 12:30 am
Hey Christal,
Glad you could laugh. Sometimes you just have to!!! To the docs you listed – all awesome!!! I have to admit a bit of partiality to Weber because he has been my doc since 2010 but also because I know for a fact that when asked what is best when folks seek his help as a second opinion, he has recommended treatment plans at institutions other than his own, if that is what he thinks best for the patient. However, Ribas and Wolchok have great reps as well.
As far as epacadostat, an IDO inhibitor: Here's what I've got –
Here's a link to a post I put up earlier this year from a webinar Weber gave: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
On the third topic down he addressed epacadostat and pembro where melanoma patients (albeit in small numbers) had a 63% ORR and those pre-treated still exhibited a 56% ORR and the combo did not produce side effects worse than with pembro alone.
Here's the tricky part – getting into a trial. The trial Brian mentioned above is with epacadostat and nivo. So that sounds like it should be as good as the one noted by Weber. At one place it says ipi is an exclusion, at another it looks like if that was your first and only treatment it is ok. It also notes that melanoma patients require "documentation of V600E activating BRAF mutation status, or consent to…testing during screening". So….I don't know it that means you have to be BRAF positive or they just want to document your status whatever it may be. I can't see why you would need to be BRAF positive for this trial. Sites include Sioux City and Fargo, as you noted.
There is also this trial: https://clinicaltrials.gov/ct2/show/NCT02752074
Here you get pembro with epadadostat or pembro alone. It seems to be still recruiting. There are 112 sites…including Montana, Iowa, Nevada. It looks like you meet the criteria. You may have had ipi as adjuvant. No mention of BRAF status. Brain tumors are not excluded….just say'n.
Bottom line. See what you're dealing with after your PET. See one of the guys you listed. CALL ANY trial you are interested in!!! All they can say is no. Plus there are other promising things in the post from Weber's webinar. Hang in there. Hope this helps. Celeste
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- August 28, 2016 at 4:51 pm
Hi Stotes, just to add a name that is not to far away, Dr. Jason Luke in Chicago. I have a video link for you with him talking about decision making. Hope it helps!!!Ed http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V8MWBM6cHIV
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- August 28, 2016 at 4:51 pm
Hi Stotes, just to add a name that is not to far away, Dr. Jason Luke in Chicago. I have a video link for you with him talking about decision making. Hope it helps!!!Ed http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V8MWBM6cHIV
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- August 28, 2016 at 4:51 pm
Hi Stotes, just to add a name that is not to far away, Dr. Jason Luke in Chicago. I have a video link for you with him talking about decision making. Hope it helps!!!Ed http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V8MWBM6cHIV
-
- August 28, 2016 at 12:30 am
Hey Christal,
Glad you could laugh. Sometimes you just have to!!! To the docs you listed – all awesome!!! I have to admit a bit of partiality to Weber because he has been my doc since 2010 but also because I know for a fact that when asked what is best when folks seek his help as a second opinion, he has recommended treatment plans at institutions other than his own, if that is what he thinks best for the patient. However, Ribas and Wolchok have great reps as well.
As far as epacadostat, an IDO inhibitor: Here's what I've got –
Here's a link to a post I put up earlier this year from a webinar Weber gave: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
On the third topic down he addressed epacadostat and pembro where melanoma patients (albeit in small numbers) had a 63% ORR and those pre-treated still exhibited a 56% ORR and the combo did not produce side effects worse than with pembro alone.
Here's the tricky part – getting into a trial. The trial Brian mentioned above is with epacadostat and nivo. So that sounds like it should be as good as the one noted by Weber. At one place it says ipi is an exclusion, at another it looks like if that was your first and only treatment it is ok. It also notes that melanoma patients require "documentation of V600E activating BRAF mutation status, or consent to…testing during screening". So….I don't know it that means you have to be BRAF positive or they just want to document your status whatever it may be. I can't see why you would need to be BRAF positive for this trial. Sites include Sioux City and Fargo, as you noted.
There is also this trial: https://clinicaltrials.gov/ct2/show/NCT02752074
Here you get pembro with epadadostat or pembro alone. It seems to be still recruiting. There are 112 sites…including Montana, Iowa, Nevada. It looks like you meet the criteria. You may have had ipi as adjuvant. No mention of BRAF status. Brain tumors are not excluded….just say'n.
Bottom line. See what you're dealing with after your PET. See one of the guys you listed. CALL ANY trial you are interested in!!! All they can say is no. Plus there are other promising things in the post from Weber's webinar. Hang in there. Hope this helps. Celeste
-
- August 27, 2016 at 11:18 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
-
- August 27, 2016 at 11:53 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
-
- August 28, 2016 at 11:53 pm
Christal,
My reply earlier was for a complete newbie out of the blocks. You definitely aren't a newbie. You got your head in the right place and doing all the right things. I've seen both Wolchok and Weber. They are both great. I would have to give Wochok the upper hand for being at an instituion with more clinical trials and for thinking out side the box. I would give Weber the upper hand for being more of a straight shooter. If you are looking just for straight advice rather than treatment you might want Weber. I remember the first time I saw him I had a handful of trials I was considering and as we were going through them he would hold his nose if he thought the trial stuck or he would chuckle and say, "I can't believe they are still trying that." If you are thinking you want a place where you might need to go one day if these treatments closer to home don't work then Wolchok would be a good choice.
Probably just made your choice harder but that's just some thoughts I had on the subject.
Brian
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- August 28, 2016 at 11:53 pm
Christal,
My reply earlier was for a complete newbie out of the blocks. You definitely aren't a newbie. You got your head in the right place and doing all the right things. I've seen both Wolchok and Weber. They are both great. I would have to give Wochok the upper hand for being at an instituion with more clinical trials and for thinking out side the box. I would give Weber the upper hand for being more of a straight shooter. If you are looking just for straight advice rather than treatment you might want Weber. I remember the first time I saw him I had a handful of trials I was considering and as we were going through them he would hold his nose if he thought the trial stuck or he would chuckle and say, "I can't believe they are still trying that." If you are thinking you want a place where you might need to go one day if these treatments closer to home don't work then Wolchok would be a good choice.
Probably just made your choice harder but that's just some thoughts I had on the subject.
Brian
-
- August 28, 2016 at 11:53 pm
Christal,
My reply earlier was for a complete newbie out of the blocks. You definitely aren't a newbie. You got your head in the right place and doing all the right things. I've seen both Wolchok and Weber. They are both great. I would have to give Wochok the upper hand for being at an instituion with more clinical trials and for thinking out side the box. I would give Weber the upper hand for being more of a straight shooter. If you are looking just for straight advice rather than treatment you might want Weber. I remember the first time I saw him I had a handful of trials I was considering and as we were going through them he would hold his nose if he thought the trial stuck or he would chuckle and say, "I can't believe they are still trying that." If you are thinking you want a place where you might need to go one day if these treatments closer to home don't work then Wolchok would be a good choice.
Probably just made your choice harder but that's just some thoughts I had on the subject.
Brian
-
- August 27, 2016 at 11:53 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
-
- August 27, 2016 at 11:53 pm
Celeste,
Thank you for your response. I have been reading this forum since my Stage lllC diagnosis but have not posted until now. I have read many of your posts and am amazed by your depth of knowledge and your willingness to share that knowledge and support others. Plus, you made me laugh (I believe the quote was "great big green hairy wizard balls") which I truly appreciate right now! Your story is amazing!
I live in South Dakota but did successfully appeal the insurance company and am seeing an Oncologist at the University of Minnesota. My insurance did deny my request for a second opinion at Mayo and MD Anderson. But… with my change in status I have already initiated another appeal for a second opinion. I will have a PET scan on Monday and see my Oncologist where I will discuss and request his assistance in getting a second opinion. He has been very open minded and agreed to treat me with Yervoy at 3 mg spaced out at every 6 weeks. He was at Mayo during the clinical trials for Yervoy so does have some experience wih melanoma patients.
These are the names I have been given for the "top melanoma specialists" in the country. Dr. Tony Ribas at UCLA, Dr. Jeffrey Weber at NYU and Dr. Jedd Wolchok at MSKCC. I plan to see one of them for a second opinion no matter if insurance pays for it or not. Do you any of these three would be a good choice?
Any thoughts on the clinical trials combining Nivo and epacadostat? I've read some promising results with less potential for severe side effects. Of course, I am aware of the Ipi/Nivo combo but am a bit leary due to the high risk for severe side effects. I feel if I do the Ipi/Nivo combo first and it didn't work I would be excluded from the Nivo/epacadostat trial. There are a lot of exclusions for clinical trials. Of course, all of this depends on my PET scan/MRI results too.
Sorry this got to be so long. I appreciate you taking time to read and respond to my posts. Thank you! Christal
-
- August 27, 2016 at 4:16 pm
Hi Stotes,
So sorry for what you are going through and don't blame you for feeling devastated. However, you are in good company here…but no matter how much melanoma sucks….and it does….great big green hairy wizard balls!!!…we keep on trucking and you can too!!! Still sucks though!
I was first diagnosed at Stage IIIb in 2003. No treatment options back then though. Progressed to Stage IV in 2010. Had nivolumab (that's Opdivo, one of the two anti-PD1 products available now…the other is Keytruda) for 2 1/2 years after lung surgery and SRS (that's stereotactic radiation) to a brain met. Just had scans this week and currently I am still NED (no evidence of disease) 13 years after my diagnosis. I know I am lucky. Others here have been and are currently going through much more…but they are still here….fighting and helping.
Get your scan results so that you can see what you are dealing with. You DESERVE a second opinion if you want one….and your doc….if they have any integretity and are worth their salt….should HELP you APPEAL the insurance decision refusing one. A melanoma specialist is crucial when dealing with melanoma. However, sounds like your current doc did well in getting you radiation and ipi initially…even though it didn't turn out as you had hoped. You are certainly a candidate for anti-PD1 (both products work about the same with the same response rates) now. Hang in there. Ask questions. Yell and scream as needed. There are lots of sweet and smart peeps here. Hang in there. Celeste
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- August 27, 2016 at 4:16 pm
Hi Stotes,
So sorry for what you are going through and don't blame you for feeling devastated. However, you are in good company here…but no matter how much melanoma sucks….and it does….great big green hairy wizard balls!!!…we keep on trucking and you can too!!! Still sucks though!
I was first diagnosed at Stage IIIb in 2003. No treatment options back then though. Progressed to Stage IV in 2010. Had nivolumab (that's Opdivo, one of the two anti-PD1 products available now…the other is Keytruda) for 2 1/2 years after lung surgery and SRS (that's stereotactic radiation) to a brain met. Just had scans this week and currently I am still NED (no evidence of disease) 13 years after my diagnosis. I know I am lucky. Others here have been and are currently going through much more…but they are still here….fighting and helping.
Get your scan results so that you can see what you are dealing with. You DESERVE a second opinion if you want one….and your doc….if they have any integretity and are worth their salt….should HELP you APPEAL the insurance decision refusing one. A melanoma specialist is crucial when dealing with melanoma. However, sounds like your current doc did well in getting you radiation and ipi initially…even though it didn't turn out as you had hoped. You are certainly a candidate for anti-PD1 (both products work about the same with the same response rates) now. Hang in there. Ask questions. Yell and scream as needed. There are lots of sweet and smart peeps here. Hang in there. Celeste
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- August 27, 2016 at 5:00 pm
another 1A story from years ago that came back and spread. i've read enough of these where i don't think they are the exception anymore. to me this indicates that once you have melanoma, it's never really gone. It's always somewhere in the body, dormant, and at some point many years later can "wake up" for whatever reason. i'm sure all the 1A's were told "don't worry, you'll probably never deal with this again, etc.."
i'm sorry you're going through this, i wish you the best
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- August 27, 2016 at 5:00 pm
another 1A story from years ago that came back and spread. i've read enough of these where i don't think they are the exception anymore. to me this indicates that once you have melanoma, it's never really gone. It's always somewhere in the body, dormant, and at some point many years later can "wake up" for whatever reason. i'm sure all the 1A's were told "don't worry, you'll probably never deal with this again, etc.."
i'm sorry you're going through this, i wish you the best
-
- August 27, 2016 at 5:00 pm
another 1A story from years ago that came back and spread. i've read enough of these where i don't think they are the exception anymore. to me this indicates that once you have melanoma, it's never really gone. It's always somewhere in the body, dormant, and at some point many years later can "wake up" for whatever reason. i'm sure all the 1A's were told "don't worry, you'll probably never deal with this again, etc.."
i'm sorry you're going through this, i wish you the best
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- August 27, 2016 at 11:30 pm
I too have read too many stories of Stage 1A returning and progressing years later. It makes me sad every time. I was told that I had a 4-7% chance of this ever progressing. I got married after my diagnosis. Waited a year after my diagnosis (as my MD recommend) and had two kids never once believing I would see this return. They are young and do not understand but know Mommy is sick. It is devastating to me that they may grow up without a mother – it just seems so incredibly unfair. Thank you for your post!
Christal
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- August 27, 2016 at 11:30 pm
I too have read too many stories of Stage 1A returning and progressing years later. It makes me sad every time. I was told that I had a 4-7% chance of this ever progressing. I got married after my diagnosis. Waited a year after my diagnosis (as my MD recommend) and had two kids never once believing I would see this return. They are young and do not understand but know Mommy is sick. It is devastating to me that they may grow up without a mother – it just seems so incredibly unfair. Thank you for your post!
Christal
-
- August 27, 2016 at 11:30 pm
I too have read too many stories of Stage 1A returning and progressing years later. It makes me sad every time. I was told that I had a 4-7% chance of this ever progressing. I got married after my diagnosis. Waited a year after my diagnosis (as my MD recommend) and had two kids never once believing I would see this return. They are young and do not understand but know Mommy is sick. It is devastating to me that they may grow up without a mother – it just seems so incredibly unfair. Thank you for your post!
Christal
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- September 14, 2016 at 3:38 am
My father just got diagnosed with in situ melanoma, what stage is he in??? Does that mean he can get the melanoma back? He had his wide surgery but im very scared cáncer will make its way back to him -
- September 14, 2016 at 3:38 am
My father just got diagnosed with in situ melanoma, what stage is he in??? Does that mean he can get the melanoma back? He had his wide surgery but im very scared cáncer will make its way back to him -
- September 20, 2016 at 4:41 am
In situ is Stage 0 – sometimes called precancerous – very low risk if any at all
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- September 20, 2016 at 4:41 am
In situ is Stage 0 – sometimes called precancerous – very low risk if any at all
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- September 20, 2016 at 4:41 am
In situ is Stage 0 – sometimes called precancerous – very low risk if any at all
-
- September 14, 2016 at 3:38 am
My father just got diagnosed with in situ melanoma, what stage is he in??? Does that mean he can get the melanoma back? He had his wide surgery but im very scared cáncer will make its way back to him
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- August 27, 2016 at 6:36 pm
Hi Stotes,
Sorry you are here but as Celeste noted, this place has an amazing group of caring, supportive, and very knowledgeable people. Stage IV diagnosis falls on all of us like a ton of bricks. What's most important now is you get proper care, and that is defined by a melanoma specialist, an oncologist who ONLY treats melanoma patients. If you have to travel, and even spend money you are sure you don't have, no matter. Just make it happen. I know this all too well but my financial sacrifice is the only reason I'm still here, stable, after years of non-stop progression. Next is the counter-intuitive advice of "the fight". Everyone here says you have to fight, but it's important that the fight not be within you. The stress, worry, and "scanxiety" has absolutely no benefit in your road to survival. Do all you can to stay distracted, and not dwell on the disease. Keep living, and you will appreciate what you have, and those you love with a deeper meaning than ever before. With quality care you can beat this.
Gary
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- August 27, 2016 at 11:41 pm
Gary,
Thank you for your response and kind words. You have some really good advise. Do you mind me asking where you went for your treatment (melanoma specialist)? My husband and I are definitely willing to spend whatever we have and to sacrifice so I can go to a melanoma specialist. It is hard to know where to go and then figuring out how to get there and get in for an appointment as quickly as possible. Your advise is spot on. If there is anything I have learned from this so far that "fighting" within myself will get me nowhere and it only hurts me. That has been the hardest thing I have ever had to do as I was born a "worrier". It is exhausting and not worth my time or the toll it takes. I have two kiddos who are great distractions and the biggest motivators ever to beat this (can't forgot a great hubby too). Thank you for the insightful advise – it really spoke to me. Take Care! Christal
-
- August 28, 2016 at 6:45 pm
Hi Christal,
Others here have and will chime in with fantastic info on treatments, and specifics while I like to think I can offer advice in beating the internal battle we all face. Glad my comments resonated. The key is to get treatment that can at the minimum keep you stable. I'm a poster child of doing that, with several huge immunotherapies FDA approved during my treatment. Just staying alive for the next big thing is key. You have a better chance of beating this than any group before you. As for my dilemma, I have a significant problem with geographic isolation. I live in Hawaii, and believe it or not, there is not a Mel specialist (as I defined) in the entire state. With a population of just about a million on Oahu, other diseases like lung cancer, heart disease, diabetes, etc. have adequate specialists, but for me, it requires a 2500+ mile plane ride to West Coast and hotel stays in arguably the most expensive city in the US, San Francisco. Yet, its worth it being treated at UCSF, and their dedicated Melanoma specific department. They saved my life. Period. While my battle continues, I remain positive, and the flowers have never smelled so good. My goal since diagnosis in late 2012 was to survive to see my daughter graduate High School. I've got another year and a half to go and have every intention on fulfilling that goal, and setting new ones beyond. Best to you in the battle.
Gary
-
- August 28, 2016 at 6:45 pm
Hi Christal,
Others here have and will chime in with fantastic info on treatments, and specifics while I like to think I can offer advice in beating the internal battle we all face. Glad my comments resonated. The key is to get treatment that can at the minimum keep you stable. I'm a poster child of doing that, with several huge immunotherapies FDA approved during my treatment. Just staying alive for the next big thing is key. You have a better chance of beating this than any group before you. As for my dilemma, I have a significant problem with geographic isolation. I live in Hawaii, and believe it or not, there is not a Mel specialist (as I defined) in the entire state. With a population of just about a million on Oahu, other diseases like lung cancer, heart disease, diabetes, etc. have adequate specialists, but for me, it requires a 2500+ mile plane ride to West Coast and hotel stays in arguably the most expensive city in the US, San Francisco. Yet, its worth it being treated at UCSF, and their dedicated Melanoma specific department. They saved my life. Period. While my battle continues, I remain positive, and the flowers have never smelled so good. My goal since diagnosis in late 2012 was to survive to see my daughter graduate High School. I've got another year and a half to go and have every intention on fulfilling that goal, and setting new ones beyond. Best to you in the battle.
Gary
-
- August 28, 2016 at 6:45 pm
Hi Christal,
Others here have and will chime in with fantastic info on treatments, and specifics while I like to think I can offer advice in beating the internal battle we all face. Glad my comments resonated. The key is to get treatment that can at the minimum keep you stable. I'm a poster child of doing that, with several huge immunotherapies FDA approved during my treatment. Just staying alive for the next big thing is key. You have a better chance of beating this than any group before you. As for my dilemma, I have a significant problem with geographic isolation. I live in Hawaii, and believe it or not, there is not a Mel specialist (as I defined) in the entire state. With a population of just about a million on Oahu, other diseases like lung cancer, heart disease, diabetes, etc. have adequate specialists, but for me, it requires a 2500+ mile plane ride to West Coast and hotel stays in arguably the most expensive city in the US, San Francisco. Yet, its worth it being treated at UCSF, and their dedicated Melanoma specific department. They saved my life. Period. While my battle continues, I remain positive, and the flowers have never smelled so good. My goal since diagnosis in late 2012 was to survive to see my daughter graduate High School. I've got another year and a half to go and have every intention on fulfilling that goal, and setting new ones beyond. Best to you in the battle.
Gary
-
- August 27, 2016 at 11:41 pm
Gary,
Thank you for your response and kind words. You have some really good advise. Do you mind me asking where you went for your treatment (melanoma specialist)? My husband and I are definitely willing to spend whatever we have and to sacrifice so I can go to a melanoma specialist. It is hard to know where to go and then figuring out how to get there and get in for an appointment as quickly as possible. Your advise is spot on. If there is anything I have learned from this so far that "fighting" within myself will get me nowhere and it only hurts me. That has been the hardest thing I have ever had to do as I was born a "worrier". It is exhausting and not worth my time or the toll it takes. I have two kiddos who are great distractions and the biggest motivators ever to beat this (can't forgot a great hubby too). Thank you for the insightful advise – it really spoke to me. Take Care! Christal
-
- August 27, 2016 at 11:41 pm
Gary,
Thank you for your response and kind words. You have some really good advise. Do you mind me asking where you went for your treatment (melanoma specialist)? My husband and I are definitely willing to spend whatever we have and to sacrifice so I can go to a melanoma specialist. It is hard to know where to go and then figuring out how to get there and get in for an appointment as quickly as possible. Your advise is spot on. If there is anything I have learned from this so far that "fighting" within myself will get me nowhere and it only hurts me. That has been the hardest thing I have ever had to do as I was born a "worrier". It is exhausting and not worth my time or the toll it takes. I have two kiddos who are great distractions and the biggest motivators ever to beat this (can't forgot a great hubby too). Thank you for the insightful advise – it really spoke to me. Take Care! Christal
-
- August 27, 2016 at 6:36 pm
Hi Stotes,
Sorry you are here but as Celeste noted, this place has an amazing group of caring, supportive, and very knowledgeable people. Stage IV diagnosis falls on all of us like a ton of bricks. What's most important now is you get proper care, and that is defined by a melanoma specialist, an oncologist who ONLY treats melanoma patients. If you have to travel, and even spend money you are sure you don't have, no matter. Just make it happen. I know this all too well but my financial sacrifice is the only reason I'm still here, stable, after years of non-stop progression. Next is the counter-intuitive advice of "the fight". Everyone here says you have to fight, but it's important that the fight not be within you. The stress, worry, and "scanxiety" has absolutely no benefit in your road to survival. Do all you can to stay distracted, and not dwell on the disease. Keep living, and you will appreciate what you have, and those you love with a deeper meaning than ever before. With quality care you can beat this.
Gary
-
- August 27, 2016 at 6:36 pm
Hi Stotes,
Sorry you are here but as Celeste noted, this place has an amazing group of caring, supportive, and very knowledgeable people. Stage IV diagnosis falls on all of us like a ton of bricks. What's most important now is you get proper care, and that is defined by a melanoma specialist, an oncologist who ONLY treats melanoma patients. If you have to travel, and even spend money you are sure you don't have, no matter. Just make it happen. I know this all too well but my financial sacrifice is the only reason I'm still here, stable, after years of non-stop progression. Next is the counter-intuitive advice of "the fight". Everyone here says you have to fight, but it's important that the fight not be within you. The stress, worry, and "scanxiety" has absolutely no benefit in your road to survival. Do all you can to stay distracted, and not dwell on the disease. Keep living, and you will appreciate what you have, and those you love with a deeper meaning than ever before. With quality care you can beat this.
Gary
-
- August 28, 2016 at 12:41 am
Hi stotes. You will find great support with this group. Have a question? Ask it. Just need to vent? Go for it.With Stage IV there is the option of targeted therapy too. They took my husband’s lung nodule biopsy and ran it through a genomics bank looking for actionable mutations (mutations that have a drug to target it). His lung specimen came back with the NRAS mutation, no BRAF. Mekinist ws the drug match. This doesn’t necessarily represent a cure but it’s another option to buy some time. Mekinist bought him 9 months of holding. The anti PD-1’s are great too. Keytruda held his melanoma for one year. Keep hopeful. Technology is fascinating. He tells me all he has to do is stay one step behind technology. Stay strong and good luck!!
-
- August 28, 2016 at 12:41 am
Hi stotes. You will find great support with this group. Have a question? Ask it. Just need to vent? Go for it.With Stage IV there is the option of targeted therapy too. They took my husband’s lung nodule biopsy and ran it through a genomics bank looking for actionable mutations (mutations that have a drug to target it). His lung specimen came back with the NRAS mutation, no BRAF. Mekinist ws the drug match. This doesn’t necessarily represent a cure but it’s another option to buy some time. Mekinist bought him 9 months of holding. The anti PD-1’s are great too. Keytruda held his melanoma for one year. Keep hopeful. Technology is fascinating. He tells me all he has to do is stay one step behind technology. Stay strong and good luck!!
-
- August 28, 2016 at 12:41 am
Hi stotes. You will find great support with this group. Have a question? Ask it. Just need to vent? Go for it.With Stage IV there is the option of targeted therapy too. They took my husband’s lung nodule biopsy and ran it through a genomics bank looking for actionable mutations (mutations that have a drug to target it). His lung specimen came back with the NRAS mutation, no BRAF. Mekinist ws the drug match. This doesn’t necessarily represent a cure but it’s another option to buy some time. Mekinist bought him 9 months of holding. The anti PD-1’s are great too. Keytruda held his melanoma for one year. Keep hopeful. Technology is fascinating. He tells me all he has to do is stay one step behind technology. Stay strong and good luck!!
-
- August 29, 2016 at 8:16 pm
Hi Stotes,
I'm sorry to "meet" you this way. I was a 1b person who eventually advanced to stage IV. I live in northern North Dakota but (after lots of learning) go to MD Anderson in Houston, TX. I still have a local doctor but MDA is in charge of my care. I also receive all my scans there. I have BCBS and all they require is a referral from my local doc.
My advice…don't go to Mayo (I know it's relatively close to SD). You'd be better off at Sanford in Fargo.
Ashley
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- August 29, 2016 at 8:16 pm
Hi Stotes,
I'm sorry to "meet" you this way. I was a 1b person who eventually advanced to stage IV. I live in northern North Dakota but (after lots of learning) go to MD Anderson in Houston, TX. I still have a local doctor but MDA is in charge of my care. I also receive all my scans there. I have BCBS and all they require is a referral from my local doc.
My advice…don't go to Mayo (I know it's relatively close to SD). You'd be better off at Sanford in Fargo.
Ashley
-
- August 31, 2016 at 11:29 pm
Ashley,
Thank you for your reply. I once read one of your posts and remember it because you said you were from North Dakota. I am confused why you would get traditional chemo (I read that in your bio). I tried to go to MDA even for a second opinion and my insurance would not cover it; a consult alone (no labs,testing or scans) was quoted at $2500. I have been going to the University of Minnesota (five hours away). My Oncologist is recommending the Ipi/Nivo combo essentially with continues Nivo alone – that is how I understand it. How did you tolerate the combo as far as side effects?
Christal
-
- August 31, 2016 at 11:29 pm
Ashley,
Thank you for your reply. I once read one of your posts and remember it because you said you were from North Dakota. I am confused why you would get traditional chemo (I read that in your bio). I tried to go to MDA even for a second opinion and my insurance would not cover it; a consult alone (no labs,testing or scans) was quoted at $2500. I have been going to the University of Minnesota (five hours away). My Oncologist is recommending the Ipi/Nivo combo essentially with continues Nivo alone – that is how I understand it. How did you tolerate the combo as far as side effects?
Christal
-
- September 17, 2016 at 9:51 pm
Sorry Christol,
I just saw this. How's it going? I only made it through 3/4 combo infusions. I was taking off due to extreme diarrhea. I lost 24 pounds in four days. However, luckily it was not colitis. Best of luck to you! I've heard a lot of people have really good luck with the U of M.
Ash
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- September 17, 2016 at 9:51 pm
Sorry Christol,
I just saw this. How's it going? I only made it through 3/4 combo infusions. I was taking off due to extreme diarrhea. I lost 24 pounds in four days. However, luckily it was not colitis. Best of luck to you! I've heard a lot of people have really good luck with the U of M.
Ash
-
- September 17, 2016 at 9:51 pm
Sorry Christol,
I just saw this. How's it going? I only made it through 3/4 combo infusions. I was taking off due to extreme diarrhea. I lost 24 pounds in four days. However, luckily it was not colitis. Best of luck to you! I've heard a lot of people have really good luck with the U of M.
Ash
-
- August 31, 2016 at 11:29 pm
Ashley,
Thank you for your reply. I once read one of your posts and remember it because you said you were from North Dakota. I am confused why you would get traditional chemo (I read that in your bio). I tried to go to MDA even for a second opinion and my insurance would not cover it; a consult alone (no labs,testing or scans) was quoted at $2500. I have been going to the University of Minnesota (five hours away). My Oncologist is recommending the Ipi/Nivo combo essentially with continues Nivo alone – that is how I understand it. How did you tolerate the combo as far as side effects?
Christal
-
- August 29, 2016 at 8:16 pm
Hi Stotes,
I'm sorry to "meet" you this way. I was a 1b person who eventually advanced to stage IV. I live in northern North Dakota but (after lots of learning) go to MD Anderson in Houston, TX. I still have a local doctor but MDA is in charge of my care. I also receive all my scans there. I have BCBS and all they require is a referral from my local doc.
My advice…don't go to Mayo (I know it's relatively close to SD). You'd be better off at Sanford in Fargo.
Ashley
-
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