› Forums › General Melanoma Community › Feeling a little helpless
- This topic has 33 replies, 5 voices, and was last updated 8 years, 3 months ago by
Nanners10.
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- January 7, 2016 at 9:44 pm
Hi all,
Just writing to see if anyone has any thoughts on the following:
Original diagnosis May 2002, WLE removed 2.24mm mole and no further treatment was deemed required.
Recurrence in regional (groin) lymph node basin November 2014. Groin dissection performed only one malignant node of four taken. Completed ipi/interferon trial in June 2015 (received ipi at 3mg dose).
One enlarged groin and one enlarged pelvic lymph node found on CT scan November 2015. Groin node was biopsied and determined to be melanoma. Surgery performed Dec 2015 to remove both lymph nodes. Three nodes were taken in total, the two enlarged ones were positive for melanoma, the other one was clear.
Now, options that have been given are radiation and interferon. No trials are available for me as adjuvant therapy at stage 3b because I already had ipi.
My dr. says that he doesn't think interferon will do anything for me because the ipi failed and it already has such low stats to start with. He says it will only make me sick for a year but nothing good will come of it. How does he know this? Is there anything to link interferon and ipi? Or is this just on the fact that ipi has a better track record than interferon and if that didn't work than chances are interferon won't either. I was considering interferon as a last resort if only for the fact that it would delay recurrence and who knows what drugs will come along in that time.
Radiation is probably a possibility (waiting on my consult) but there aren't any studies that show increased overall survival (to my knowledge).
My dr. says that there are lots of treatments for me "down the road" because of my BRAF mutation. Problem is that down the road means stage iV and that's not very comforting.
I feel like I am just waiting on another recurrence.
I would love to hear from anyone in a similar situation to get your thoughts on what you have done or been offered.
Nancy
- Replies
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- January 7, 2016 at 10:41 pm
Hey Nancy,
So sorry for your situation. The lack of treatment for Stage III, and adjuvant treatment for melanoma generally, makes me crazy. Multiple cohorts of NED ratties (myself included) participated in an adjuvant arm of a Nivo/Opdivo trial…my time ran from Dec 2010 to June 2013…I remain NED after dealing with melanoma since 2003 and with brain and lung mets in 2010! In fact, we have more than proven that it is worth doing!!!! The limited help interferon provides melanoma patients and the frequently significant side effects it causes is very clear in the published data. A quick look at the clinicaltrials.gov site using the search term "adjuvant and melanoma and recruiting" does sadly confirm that your doc is right that your prior ipi treatment is often an exclusion. However, I did find this for which you seem elgible: https://clinicaltrials.gov/ct2/show/NCT01729663?term=adjuvant+for+melanoma&rank=49
This trial puts a vaccine with BCG and GMCSF against interferon. Not necessarily promoting it…but you might want to talk to your doc about it. Apart from my cohort's experience with anti-PD1…studies have used BRAF inhibitors in the adjuvant setting and folks have done well with that too!!! There are several articles noting that on my blog…the BRIM 8 study is just one example.
I don't know how much this post will help you…but it was written for someone also seeking adjuvant treatment:
Perhaps the info on GMSF generally may be helpful. Sorry I have so little to offer. Perhaps other are aware of better options. Hang in there!!! yours, celeste
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- January 8, 2016 at 3:10 am
Thank you so much for taking the time to reply Celeste. I have been on this board more and more lately and you are always so willing to share your knowledge and journey. It is very much appreciated.
I will look into those links you provided and make the best decisions I can given the options and information available.
Nancy
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- January 8, 2016 at 3:10 am
Thank you so much for taking the time to reply Celeste. I have been on this board more and more lately and you are always so willing to share your knowledge and journey. It is very much appreciated.
I will look into those links you provided and make the best decisions I can given the options and information available.
Nancy
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- January 8, 2016 at 3:10 am
Thank you so much for taking the time to reply Celeste. I have been on this board more and more lately and you are always so willing to share your knowledge and journey. It is very much appreciated.
I will look into those links you provided and make the best decisions I can given the options and information available.
Nancy
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- January 8, 2016 at 5:49 pm
Hi Nancy, and Celeste-
I was the one for whom celeste posted the above link. I am in the same boat…
Stage 3B, with 2 reccurrences…some calling intrtansits some calling local but both in same spot in or near excision…on neck!
Oncologists do want want to give me IPI as adjuvant based on my having developed colitis (though minor case) in april after compleling a vaccine trial. One ONC reccommending 1 year course of Leukine….which from everythig i've read seems almost worthless, yet she feels there is some benefit to my doing it…
MSK Onc agrees, and also wouldnt reccommend IPI. I have been in touch and may go see U PENN, Lynn Schucter who is more of an IPI fan, and believe she would give me IPI at 3mg, but really there is no data for 3mg since adjuvant treatment dose was approved at 10mg….
I have just completed treatment # 4 today of 5 radiation treatments…..this was reccommened for local control since both reccurrences (thankfully) have been in the same place.
In the next few weeks I have to makse some decisions, and am ABSOLUTELY TORN on what to do.
Stage 3B, is not an easy place to be, but of course none of us wants to progress to stage 4.
Let us know what you do!
best,
jenny
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- January 8, 2016 at 5:49 pm
Hi Nancy, and Celeste-
I was the one for whom celeste posted the above link. I am in the same boat…
Stage 3B, with 2 reccurrences…some calling intrtansits some calling local but both in same spot in or near excision…on neck!
Oncologists do want want to give me IPI as adjuvant based on my having developed colitis (though minor case) in april after compleling a vaccine trial. One ONC reccommending 1 year course of Leukine….which from everythig i've read seems almost worthless, yet she feels there is some benefit to my doing it…
MSK Onc agrees, and also wouldnt reccommend IPI. I have been in touch and may go see U PENN, Lynn Schucter who is more of an IPI fan, and believe she would give me IPI at 3mg, but really there is no data for 3mg since adjuvant treatment dose was approved at 10mg….
I have just completed treatment # 4 today of 5 radiation treatments…..this was reccommened for local control since both reccurrences (thankfully) have been in the same place.
In the next few weeks I have to makse some decisions, and am ABSOLUTELY TORN on what to do.
Stage 3B, is not an easy place to be, but of course none of us wants to progress to stage 4.
Let us know what you do!
best,
jenny
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- January 8, 2016 at 11:47 pm
Hi Jenny,
You have posted for me before and I thank you for taking the time to do so. Mainly because it's nice to feel like there are others in this limbo land of stage 3.
I spoke again with my onc today and he spoke with another melanoma specialist and they both agree that interferon would be pretty much useless for me and would only make me feel awful for a year. I asked him again about delay of recurrence and he said that there are so many better drugs out there for melanoma and with my BRAF status there are a lot of options. I told him that those are only in stage 4 though and he concurred and didn't really have much to say after that.
It is so counterintuitive that there is so much excitement about the drugs for stage 4 (which, don't get me wrong is absolutely fantastic news) but I would think that preventing people from getting there is so important as well.
Although the ipi didn't seem to do anything for me it was a pretty easy go with minimal side effects in my case so I feel fortunate to have been able to participate in that trial.
I have my radiation appt next week and will know more then. I will have to officially decide whether I'm doing the interferon or the watch and wait. At this point I feel like it may be silly to do the interferon and feel so crappy for no benefit and may look into other natural alternatives to boost my immune system while we watch and wait.
I will let you know for sure once I decide.
Good luck to you with your upcoming appointments as well!
Nancy
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- January 8, 2016 at 11:47 pm
Hi Jenny,
You have posted for me before and I thank you for taking the time to do so. Mainly because it's nice to feel like there are others in this limbo land of stage 3.
I spoke again with my onc today and he spoke with another melanoma specialist and they both agree that interferon would be pretty much useless for me and would only make me feel awful for a year. I asked him again about delay of recurrence and he said that there are so many better drugs out there for melanoma and with my BRAF status there are a lot of options. I told him that those are only in stage 4 though and he concurred and didn't really have much to say after that.
It is so counterintuitive that there is so much excitement about the drugs for stage 4 (which, don't get me wrong is absolutely fantastic news) but I would think that preventing people from getting there is so important as well.
Although the ipi didn't seem to do anything for me it was a pretty easy go with minimal side effects in my case so I feel fortunate to have been able to participate in that trial.
I have my radiation appt next week and will know more then. I will have to officially decide whether I'm doing the interferon or the watch and wait. At this point I feel like it may be silly to do the interferon and feel so crappy for no benefit and may look into other natural alternatives to boost my immune system while we watch and wait.
I will let you know for sure once I decide.
Good luck to you with your upcoming appointments as well!
Nancy
-
- January 8, 2016 at 11:47 pm
Hi Jenny,
You have posted for me before and I thank you for taking the time to do so. Mainly because it's nice to feel like there are others in this limbo land of stage 3.
I spoke again with my onc today and he spoke with another melanoma specialist and they both agree that interferon would be pretty much useless for me and would only make me feel awful for a year. I asked him again about delay of recurrence and he said that there are so many better drugs out there for melanoma and with my BRAF status there are a lot of options. I told him that those are only in stage 4 though and he concurred and didn't really have much to say after that.
It is so counterintuitive that there is so much excitement about the drugs for stage 4 (which, don't get me wrong is absolutely fantastic news) but I would think that preventing people from getting there is so important as well.
Although the ipi didn't seem to do anything for me it was a pretty easy go with minimal side effects in my case so I feel fortunate to have been able to participate in that trial.
I have my radiation appt next week and will know more then. I will have to officially decide whether I'm doing the interferon or the watch and wait. At this point I feel like it may be silly to do the interferon and feel so crappy for no benefit and may look into other natural alternatives to boost my immune system while we watch and wait.
I will let you know for sure once I decide.
Good luck to you with your upcoming appointments as well!
Nancy
-
- January 8, 2016 at 5:49 pm
Hi Nancy, and Celeste-
I was the one for whom celeste posted the above link. I am in the same boat…
Stage 3B, with 2 reccurrences…some calling intrtansits some calling local but both in same spot in or near excision…on neck!
Oncologists do want want to give me IPI as adjuvant based on my having developed colitis (though minor case) in april after compleling a vaccine trial. One ONC reccommending 1 year course of Leukine….which from everythig i've read seems almost worthless, yet she feels there is some benefit to my doing it…
MSK Onc agrees, and also wouldnt reccommend IPI. I have been in touch and may go see U PENN, Lynn Schucter who is more of an IPI fan, and believe she would give me IPI at 3mg, but really there is no data for 3mg since adjuvant treatment dose was approved at 10mg….
I have just completed treatment # 4 today of 5 radiation treatments…..this was reccommened for local control since both reccurrences (thankfully) have been in the same place.
In the next few weeks I have to makse some decisions, and am ABSOLUTELY TORN on what to do.
Stage 3B, is not an easy place to be, but of course none of us wants to progress to stage 4.
Let us know what you do!
best,
jenny
-
- January 7, 2016 at 10:41 pm
Hey Nancy,
So sorry for your situation. The lack of treatment for Stage III, and adjuvant treatment for melanoma generally, makes me crazy. Multiple cohorts of NED ratties (myself included) participated in an adjuvant arm of a Nivo/Opdivo trial…my time ran from Dec 2010 to June 2013…I remain NED after dealing with melanoma since 2003 and with brain and lung mets in 2010! In fact, we have more than proven that it is worth doing!!!! The limited help interferon provides melanoma patients and the frequently significant side effects it causes is very clear in the published data. A quick look at the clinicaltrials.gov site using the search term "adjuvant and melanoma and recruiting" does sadly confirm that your doc is right that your prior ipi treatment is often an exclusion. However, I did find this for which you seem elgible: https://clinicaltrials.gov/ct2/show/NCT01729663?term=adjuvant+for+melanoma&rank=49
This trial puts a vaccine with BCG and GMCSF against interferon. Not necessarily promoting it…but you might want to talk to your doc about it. Apart from my cohort's experience with anti-PD1…studies have used BRAF inhibitors in the adjuvant setting and folks have done well with that too!!! There are several articles noting that on my blog…the BRIM 8 study is just one example.
I don't know how much this post will help you…but it was written for someone also seeking adjuvant treatment:
Perhaps the info on GMSF generally may be helpful. Sorry I have so little to offer. Perhaps other are aware of better options. Hang in there!!! yours, celeste
-
- January 7, 2016 at 10:41 pm
Hey Nancy,
So sorry for your situation. The lack of treatment for Stage III, and adjuvant treatment for melanoma generally, makes me crazy. Multiple cohorts of NED ratties (myself included) participated in an adjuvant arm of a Nivo/Opdivo trial…my time ran from Dec 2010 to June 2013…I remain NED after dealing with melanoma since 2003 and with brain and lung mets in 2010! In fact, we have more than proven that it is worth doing!!!! The limited help interferon provides melanoma patients and the frequently significant side effects it causes is very clear in the published data. A quick look at the clinicaltrials.gov site using the search term "adjuvant and melanoma and recruiting" does sadly confirm that your doc is right that your prior ipi treatment is often an exclusion. However, I did find this for which you seem elgible: https://clinicaltrials.gov/ct2/show/NCT01729663?term=adjuvant+for+melanoma&rank=49
This trial puts a vaccine with BCG and GMCSF against interferon. Not necessarily promoting it…but you might want to talk to your doc about it. Apart from my cohort's experience with anti-PD1…studies have used BRAF inhibitors in the adjuvant setting and folks have done well with that too!!! There are several articles noting that on my blog…the BRIM 8 study is just one example.
I don't know how much this post will help you…but it was written for someone also seeking adjuvant treatment:
Perhaps the info on GMSF generally may be helpful. Sorry I have so little to offer. Perhaps other are aware of better options. Hang in there!!! yours, celeste
-
- January 7, 2016 at 11:03 pm
Hi Nancy – I'm sorry you're dealing with this. Celeste is pretty on point and she provides tons of information as well.
Stage III is still very frustrating, although just having ipi available is positive as it wasn't a couple years ago. When I was stage III, i declined interferon because of the pretty rough side effects compared to limited benefits. Although, you bring up a valid point about delayed recurrence and certainly right now, new stuff is coming at an impressive rate.
I would also note that radiation has been suggested to have positive connection with ipi treatments (several months earlier) and while I don't think that has been tested specifically, many researchers are positing the theory that radiation causes the release of antigens which engages your t-cells to attack more and at specific spots where your tumors are. (http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/)
Your doctor is also correct about treatments "down the road." In fact, there seems to be a subset of people who think that stage 4, right now, is almost (almost!) preferable because of the treatment options. To that end, take some solace in knowing that if they didn't get it all, you've got a pretty good arsenal of new weapons. Weapons you definitely didn't have in 2002.
Good luck – Justin
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- January 8, 2016 at 3:35 pm
No problem. Hang in there. Also, you hit upon a totally important, yet cliched point that was passed to me. When I was first diagnosed as stage IV, I serendipitously met a former (retired) researcher for a cancer specific biomedical research foundation. He and I hit it off one day and were exchanging emails – he knew a ton about cancer and some about my cancer (he was not melanoma specific, but understood immunotherapy pretty well).
We talked about long odds, difficulty of treatment, etc., but the one thing he emphasized to me, in an admittedly cliched manner, was that the research subjects he knew personally truly did better when they thought positively. He admitted he had no research to back that up and otherwise based his understanding on his opinions of those folks, but truly believed this. A guy with a number of educational degrees and was probably a leader in his field and the number one piece of advice he gave was "stay positive, it works."
Take from that what you will.
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- January 8, 2016 at 3:35 pm
No problem. Hang in there. Also, you hit upon a totally important, yet cliched point that was passed to me. When I was first diagnosed as stage IV, I serendipitously met a former (retired) researcher for a cancer specific biomedical research foundation. He and I hit it off one day and were exchanging emails – he knew a ton about cancer and some about my cancer (he was not melanoma specific, but understood immunotherapy pretty well).
We talked about long odds, difficulty of treatment, etc., but the one thing he emphasized to me, in an admittedly cliched manner, was that the research subjects he knew personally truly did better when they thought positively. He admitted he had no research to back that up and otherwise based his understanding on his opinions of those folks, but truly believed this. A guy with a number of educational degrees and was probably a leader in his field and the number one piece of advice he gave was "stay positive, it works."
Take from that what you will.
-
- January 8, 2016 at 3:35 pm
No problem. Hang in there. Also, you hit upon a totally important, yet cliched point that was passed to me. When I was first diagnosed as stage IV, I serendipitously met a former (retired) researcher for a cancer specific biomedical research foundation. He and I hit it off one day and were exchanging emails – he knew a ton about cancer and some about my cancer (he was not melanoma specific, but understood immunotherapy pretty well).
We talked about long odds, difficulty of treatment, etc., but the one thing he emphasized to me, in an admittedly cliched manner, was that the research subjects he knew personally truly did better when they thought positively. He admitted he had no research to back that up and otherwise based his understanding on his opinions of those folks, but truly believed this. A guy with a number of educational degrees and was probably a leader in his field and the number one piece of advice he gave was "stay positive, it works."
Take from that what you will.
-
- January 7, 2016 at 11:03 pm
Hi Nancy – I'm sorry you're dealing with this. Celeste is pretty on point and she provides tons of information as well.
Stage III is still very frustrating, although just having ipi available is positive as it wasn't a couple years ago. When I was stage III, i declined interferon because of the pretty rough side effects compared to limited benefits. Although, you bring up a valid point about delayed recurrence and certainly right now, new stuff is coming at an impressive rate.
I would also note that radiation has been suggested to have positive connection with ipi treatments (several months earlier) and while I don't think that has been tested specifically, many researchers are positing the theory that radiation causes the release of antigens which engages your t-cells to attack more and at specific spots where your tumors are. (http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/)
Your doctor is also correct about treatments "down the road." In fact, there seems to be a subset of people who think that stage 4, right now, is almost (almost!) preferable because of the treatment options. To that end, take some solace in knowing that if they didn't get it all, you've got a pretty good arsenal of new weapons. Weapons you definitely didn't have in 2002.
Good luck – Justin
-
- January 7, 2016 at 11:03 pm
Hi Nancy – I'm sorry you're dealing with this. Celeste is pretty on point and she provides tons of information as well.
Stage III is still very frustrating, although just having ipi available is positive as it wasn't a couple years ago. When I was stage III, i declined interferon because of the pretty rough side effects compared to limited benefits. Although, you bring up a valid point about delayed recurrence and certainly right now, new stuff is coming at an impressive rate.
I would also note that radiation has been suggested to have positive connection with ipi treatments (several months earlier) and while I don't think that has been tested specifically, many researchers are positing the theory that radiation causes the release of antigens which engages your t-cells to attack more and at specific spots where your tumors are. (http://www.uphs.upenn.edu/news/News_Releases/2015/03/minn/)
Your doctor is also correct about treatments "down the road." In fact, there seems to be a subset of people who think that stage 4, right now, is almost (almost!) preferable because of the treatment options. To that end, take some solace in knowing that if they didn't get it all, you've got a pretty good arsenal of new weapons. Weapons you definitely didn't have in 2002.
Good luck – Justin
-
- January 8, 2016 at 1:06 pm
Justin makes a good point, Nancy..in that radiation combined with or sequential to immunotherapy is becoming more recognized as a beneficial combo. In fact, it has been studied a great deal. Here is a post that addresses that with a couple of articles contained within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html
Using the search bubble in the blog you can find many more articles relative to radiation. Hope that helps. Perhaps your prior ipi treatment will prove beneficial to you in the long run!!! c
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- January 8, 2016 at 1:06 pm
Justin makes a good point, Nancy..in that radiation combined with or sequential to immunotherapy is becoming more recognized as a beneficial combo. In fact, it has been studied a great deal. Here is a post that addresses that with a couple of articles contained within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html
Using the search bubble in the blog you can find many more articles relative to radiation. Hope that helps. Perhaps your prior ipi treatment will prove beneficial to you in the long run!!! c
-
- January 8, 2016 at 1:06 pm
Justin makes a good point, Nancy..in that radiation combined with or sequential to immunotherapy is becoming more recognized as a beneficial combo. In fact, it has been studied a great deal. Here is a post that addresses that with a couple of articles contained within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/why-immunotherapy-is-good-for-lots-of.html
Using the search bubble in the blog you can find many more articles relative to radiation. Hope that helps. Perhaps your prior ipi treatment will prove beneficial to you in the long run!!! c
-
- January 8, 2016 at 5:18 pm
Hi Nancy, I looked up a video from Onclive peer exchange about treating Melanoma. In episode 5 the panel talks about "Role of adjuvant radiation therapy in Melanoma. The panel is excellent with some of the best in the Melanoma field. When I try to post the link it doesn't work. So here is the typed version of how to get to onclive ( http://www.onclive.coom/peer-exchange/metastatic-melanoma.) Click on Melanoma on the topic list(left side of page) then look down the page and choose " Practical considerations in Metastatic Melanoma. Then pick episode # 5, there are 14 different short video which were made in 2014. Wishing you the best!!!! Ed
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- January 8, 2016 at 5:18 pm
Hi Nancy, I looked up a video from Onclive peer exchange about treating Melanoma. In episode 5 the panel talks about "Role of adjuvant radiation therapy in Melanoma. The panel is excellent with some of the best in the Melanoma field. When I try to post the link it doesn't work. So here is the typed version of how to get to onclive ( http://www.onclive.coom/peer-exchange/metastatic-melanoma.) Click on Melanoma on the topic list(left side of page) then look down the page and choose " Practical considerations in Metastatic Melanoma. Then pick episode # 5, there are 14 different short video which were made in 2014. Wishing you the best!!!! Ed
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- January 8, 2016 at 5:18 pm
Hi Nancy, I looked up a video from Onclive peer exchange about treating Melanoma. In episode 5 the panel talks about "Role of adjuvant radiation therapy in Melanoma. The panel is excellent with some of the best in the Melanoma field. When I try to post the link it doesn't work. So here is the typed version of how to get to onclive ( http://www.onclive.coom/peer-exchange/metastatic-melanoma.) Click on Melanoma on the topic list(left side of page) then look down the page and choose " Practical considerations in Metastatic Melanoma. Then pick episode # 5, there are 14 different short video which were made in 2014. Wishing you the best!!!! Ed
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