› Forums › General Melanoma Community › Treatment update- some may find interesting, but more questions than answers
- This topic has 33 replies, 7 voices, and was last updated 8 years, 5 months ago by
jenny22.
- Post
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- November 30, 2015 at 2:02 pm
Hi all- I wanted to share and get some thoughts on my recent oncology consults for next steps in treatment…stage 3B, recurrent……
Quick recap-
Diagnosed Sept. 2013- 1.3mm, right neck…..WLE, but no SNB (long story…but couldn't be done)…..thought to be node negative, staged 1B…followed with ultrasounds of neck, all ok until 14 months out….Nov. 2014- 2 tiny pea size bumps- intransit mets….move to stage 3B. Had surgically removed….margins "iffy", had 2nd surgery…all clear….
Saw 4 melanoma "experts"….MSK, NYU, UPENN, Rutgers, and Mt. Sinai- after which I participated in a vaccine trial…..CDX1401 & Poly-ICLC with or without CDX301.
Now, just shy of 1 year after first recurrence, found new "little bump", confirmed to be melanoma…..so recurrence # 2, SCAN confirmed no further spread, so continues to be local recurrence. Again, surgically removed.
Radiation is now recommended to "sterilize the neck area"- Some of you have written that radiation is not beneficial for melanoma …..having now seen NYU & MSK, and they both agree that it is good for local control in this case…Cleary reminding me it is only for local recurrence, with no systemic benefit. Since it keeps coming back in the same place they agree this makes sense….There were varying opinions on how to deliver the radiation, which was interesting. As of now I will start the week after XMAS.
The real question though is on the systemic treatment. I know this can be an interesting topic here…..
Stage 3b, node negative, 2 recurrences- Seems pretty high risk to me-
so what to do?
Neither MSK nor NYU wants to give me IPI (at the newly approved10mg/kg). Point of interest- 2 days after the LAST vaccine injection i developed diarrhrea which lasted for several months, ending with a colonoscopy, confiming "microscopic colitis"….based on this my Doc (PAVLICK) is REALLY against giving me ipi now.
MSK doesn't have anything to offer than IPI. which he said he would give me if I REALLY wanted it, (but is "disinclined" to offer that)…
NYU- Dr. Pavlick is suggesting i do one year of Leukine- I have of course done tons of reading and cant find anything particulary positive about the use of leukine in this setting.
We always tell newbies on this board to make sure they are seeing a Melanoma specialist, who only sees melanoma ALL DAY LONG…..that is exactly waht Dr. Pavlick is…many on this board know and love her…as I do.
So not sure what to do…..looking for PDI trial but haven't see much, and not even any data yet to suggest PDI given alone in the adjuvant setting has any merit…
For all of you out there making similar decisions, in the hopes of not progressing to Stage IV……I'd welcome some opinions…..
Thanks and best,
jenny
- Replies
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- November 30, 2015 at 2:41 pm
I've heard that although the approved dose for stage 3 ipi is 10mg since it is FDA approved they can give a lower dose. Never higher of course but lower. Also the frequency is every 3 weeks and they can increase that to 4 weeks or more but never lower than 3 weeks. Seems from what I've heard anyway and experienced that is pretty standard for FDA approved meds.
As far as experience the zometa I think was every 3 weeks but they offered to lower the dose if I wanted to continue. With xgeva it's supposed to be every 4 weeks but I get it every 6 and they can't do it every 3. With abraxane I get it every 3 weeks but they said if I want I can have it every week. Also my dose is like the highest but they could lower it if needed. Same for the braf pills they can lower the number you are supposed to take a day.
So anyway they could lower the dose of ipi to 3 or whatever from what I've heard.
Granted someone may come on and correct me but that's been my experience and what I've heard about FDA approved meds.
Artie
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- November 30, 2015 at 2:41 pm
I've heard that although the approved dose for stage 3 ipi is 10mg since it is FDA approved they can give a lower dose. Never higher of course but lower. Also the frequency is every 3 weeks and they can increase that to 4 weeks or more but never lower than 3 weeks. Seems from what I've heard anyway and experienced that is pretty standard for FDA approved meds.
As far as experience the zometa I think was every 3 weeks but they offered to lower the dose if I wanted to continue. With xgeva it's supposed to be every 4 weeks but I get it every 6 and they can't do it every 3. With abraxane I get it every 3 weeks but they said if I want I can have it every week. Also my dose is like the highest but they could lower it if needed. Same for the braf pills they can lower the number you are supposed to take a day.
So anyway they could lower the dose of ipi to 3 or whatever from what I've heard.
Granted someone may come on and correct me but that's been my experience and what I've heard about FDA approved meds.
Artie
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- November 30, 2015 at 2:41 pm
I've heard that although the approved dose for stage 3 ipi is 10mg since it is FDA approved they can give a lower dose. Never higher of course but lower. Also the frequency is every 3 weeks and they can increase that to 4 weeks or more but never lower than 3 weeks. Seems from what I've heard anyway and experienced that is pretty standard for FDA approved meds.
As far as experience the zometa I think was every 3 weeks but they offered to lower the dose if I wanted to continue. With xgeva it's supposed to be every 4 weeks but I get it every 6 and they can't do it every 3. With abraxane I get it every 3 weeks but they said if I want I can have it every week. Also my dose is like the highest but they could lower it if needed. Same for the braf pills they can lower the number you are supposed to take a day.
So anyway they could lower the dose of ipi to 3 or whatever from what I've heard.
Granted someone may come on and correct me but that's been my experience and what I've heard about FDA approved meds.
Artie
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- November 30, 2015 at 7:44 pm
Jenny,
You may want to look into this trial first. You have a 50/50 chance of getting a placebo or Keytruda. You may not qualify if you did not have your lymph nodes removed, but it does not hurt to look into it.
"Study titled 'Study of Pembrolizumab (MK-3475) versus Placebo after Complete Resection of High-Risk Stage III Melanoma (MK-3475-054/KEYNOTE-054)'":
The reason they will not give you IPI is because you will have colitus side effects from it. You do not want that.
Tom
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- November 30, 2015 at 8:45 pm
Hi Tom, and thanks for your reply…..
Regarding IPI, yes, I knew that my past collitis would be a probem, but wondered if at the 3mg/kg someone may consider it.
Regarding the trial you mentioned…i had read about it……its only being done in Europe and two places in the USA, Park ridge, Illinois , and Iowa city , Iowa…..
I would travel if i thought it my best option but not sure, based on 50% chance of getting placebo….
SO I then have to wonder if Leukine is my only other option is better than placebo……OR NOT?
I have a 3rd appt tomorrow at Rutgers with their Melanoma expert and will see what she has to say.
I also have another interesting contact…..there is a company called NEON Therapeutics…I have very close friends there….and have sent them my "story" …..the guy who is my contact is going to see what their thoughts are for me…..will be very interested to hear what they have to say.
Will keep searrching until something makes sense…
Am currently scheduled to start Radiation on 12/29, and just want to be sure of everything before i start.
Thanks again Tom.
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- November 30, 2015 at 8:45 pm
Hi Tom, and thanks for your reply…..
Regarding IPI, yes, I knew that my past collitis would be a probem, but wondered if at the 3mg/kg someone may consider it.
Regarding the trial you mentioned…i had read about it……its only being done in Europe and two places in the USA, Park ridge, Illinois , and Iowa city , Iowa…..
I would travel if i thought it my best option but not sure, based on 50% chance of getting placebo….
SO I then have to wonder if Leukine is my only other option is better than placebo……OR NOT?
I have a 3rd appt tomorrow at Rutgers with their Melanoma expert and will see what she has to say.
I also have another interesting contact…..there is a company called NEON Therapeutics…I have very close friends there….and have sent them my "story" …..the guy who is my contact is going to see what their thoughts are for me…..will be very interested to hear what they have to say.
Will keep searrching until something makes sense…
Am currently scheduled to start Radiation on 12/29, and just want to be sure of everything before i start.
Thanks again Tom.
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- November 30, 2015 at 8:45 pm
Hi Tom, and thanks for your reply…..
Regarding IPI, yes, I knew that my past collitis would be a probem, but wondered if at the 3mg/kg someone may consider it.
Regarding the trial you mentioned…i had read about it……its only being done in Europe and two places in the USA, Park ridge, Illinois , and Iowa city , Iowa…..
I would travel if i thought it my best option but not sure, based on 50% chance of getting placebo….
SO I then have to wonder if Leukine is my only other option is better than placebo……OR NOT?
I have a 3rd appt tomorrow at Rutgers with their Melanoma expert and will see what she has to say.
I also have another interesting contact…..there is a company called NEON Therapeutics…I have very close friends there….and have sent them my "story" …..the guy who is my contact is going to see what their thoughts are for me…..will be very interested to hear what they have to say.
Will keep searrching until something makes sense…
Am currently scheduled to start Radiation on 12/29, and just want to be sure of everything before i start.
Thanks again Tom.
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- November 30, 2015 at 10:44 pm
Hi Jenny,
We have similar stories. For me rather than cherry picking the intransit mets and doing radiation, my dr and I left them in so I would not be NED (so as to qualify for IPI/PEMBRO), and to see if the systematic treatment is working.
I know it took a bit of insurance company wrangling for me to get PEMBRO at 3C, but I'm glad I did it as it's working and I'm watching the suckers melt away. No regrets at all.
Peace,
Julie
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- November 30, 2015 at 10:44 pm
Hi Jenny,
We have similar stories. For me rather than cherry picking the intransit mets and doing radiation, my dr and I left them in so I would not be NED (so as to qualify for IPI/PEMBRO), and to see if the systematic treatment is working.
I know it took a bit of insurance company wrangling for me to get PEMBRO at 3C, but I'm glad I did it as it's working and I'm watching the suckers melt away. No regrets at all.
Peace,
Julie
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- November 30, 2015 at 11:42 pm
Hi Julie-
I am happy for you that you are watching things "melt away"….
That was never even a discussion for me…not sure why…it was never suggested…..
So now, in the limbo land…..There is a PEMBRO trial being done now, but only in Chicago or IOWA…and 50/50 shot at getting Placebo…..
Travel far to take a shot at geting placebo???…..try leukine……see if anyone would give me IPI at 3mg/kg??????
Scheduled to start radiation on 12/29…want to be sure it doesnt exclude me from other next stpes….
just dont want to make the wrong choice….
REally scared right now….2 local recurrences but who knows wehre this is going next……
Have to make some decsions, but not sure how i am going to get there…
Thanks for writing!
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- November 30, 2015 at 11:42 pm
Hi Julie-
I am happy for you that you are watching things "melt away"….
That was never even a discussion for me…not sure why…it was never suggested…..
So now, in the limbo land…..There is a PEMBRO trial being done now, but only in Chicago or IOWA…and 50/50 shot at getting Placebo…..
Travel far to take a shot at geting placebo???…..try leukine……see if anyone would give me IPI at 3mg/kg??????
Scheduled to start radiation on 12/29…want to be sure it doesnt exclude me from other next stpes….
just dont want to make the wrong choice….
REally scared right now….2 local recurrences but who knows wehre this is going next……
Have to make some decsions, but not sure how i am going to get there…
Thanks for writing!
-
- November 30, 2015 at 11:42 pm
Hi Julie-
I am happy for you that you are watching things "melt away"….
That was never even a discussion for me…not sure why…it was never suggested…..
So now, in the limbo land…..There is a PEMBRO trial being done now, but only in Chicago or IOWA…and 50/50 shot at getting Placebo…..
Travel far to take a shot at geting placebo???…..try leukine……see if anyone would give me IPI at 3mg/kg??????
Scheduled to start radiation on 12/29…want to be sure it doesnt exclude me from other next stpes….
just dont want to make the wrong choice….
REally scared right now….2 local recurrences but who knows wehre this is going next……
Have to make some decsions, but not sure how i am going to get there…
Thanks for writing!
-
- November 30, 2015 at 10:44 pm
Hi Jenny,
We have similar stories. For me rather than cherry picking the intransit mets and doing radiation, my dr and I left them in so I would not be NED (so as to qualify for IPI/PEMBRO), and to see if the systematic treatment is working.
I know it took a bit of insurance company wrangling for me to get PEMBRO at 3C, but I'm glad I did it as it's working and I'm watching the suckers melt away. No regrets at all.
Peace,
Julie
-
- November 30, 2015 at 7:44 pm
Jenny,
You may want to look into this trial first. You have a 50/50 chance of getting a placebo or Keytruda. You may not qualify if you did not have your lymph nodes removed, but it does not hurt to look into it.
"Study titled 'Study of Pembrolizumab (MK-3475) versus Placebo after Complete Resection of High-Risk Stage III Melanoma (MK-3475-054/KEYNOTE-054)'":
The reason they will not give you IPI is because you will have colitus side effects from it. You do not want that.
Tom
-
- November 30, 2015 at 7:44 pm
Jenny,
You may want to look into this trial first. You have a 50/50 chance of getting a placebo or Keytruda. You may not qualify if you did not have your lymph nodes removed, but it does not hurt to look into it.
"Study titled 'Study of Pembrolizumab (MK-3475) versus Placebo after Complete Resection of High-Risk Stage III Melanoma (MK-3475-054/KEYNOTE-054)'":
The reason they will not give you IPI is because you will have colitus side effects from it. You do not want that.
Tom
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- December 1, 2015 at 12:32 am
Hey Jenny,
Tried to post response to your concerns, but was blocked my Mollom. So…reposted that response to my blog. You can read it here if you like: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/response-to-jenny-regarding-adjuvant.html
I wish you my best. Celeste
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- December 1, 2015 at 12:32 am
Hey Jenny,
Tried to post response to your concerns, but was blocked my Mollom. So…reposted that response to my blog. You can read it here if you like: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/response-to-jenny-regarding-adjuvant.html
I wish you my best. Celeste
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- December 1, 2015 at 12:32 am
Hey Jenny,
Tried to post response to your concerns, but was blocked my Mollom. So…reposted that response to my blog. You can read it here if you like: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/response-to-jenny-regarding-adjuvant.html
I wish you my best. Celeste
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- December 1, 2015 at 4:47 pm
Hi Celeste-
I continue to be amazed at the time you give to this group and thoughtful responses you provide.
I will certainly discuss all of this again with Dr. Pavlick…..in reading everything in your post, and the subsequent links, i dont see much written on the use of Leukine alone…..some comments about its helping the side effects of IPI whcen used in combination, or T-Vec when combined with virus…..(though i have nothing into which i can inject anything) So I remain perplexed about her thoughts on a year of leukine alone.
Again, I have to ask about the use of IPi at 3mg/kg…and/or the possibity of a PD1 trial….(one i see is with placebo, and so far no where near me, so not sure about traveling to take a chacne of getting placebo……vs doing leukine…
I have never had any LN removed so not sure if that has any imapct on possible trials….
Just had one last RAD CONSULT this morning…..have to decide if I will do the 600 greys over 5 treaments….or 240 over 20 treatments…both of which are NCCN apprved treament plans for locally recurrent disease.
ugh, stil tough decisons….
Thank you again for taking the time to write!
All the best,
jenny
-
- December 1, 2015 at 4:47 pm
Hi Celeste-
I continue to be amazed at the time you give to this group and thoughtful responses you provide.
I will certainly discuss all of this again with Dr. Pavlick…..in reading everything in your post, and the subsequent links, i dont see much written on the use of Leukine alone…..some comments about its helping the side effects of IPI whcen used in combination, or T-Vec when combined with virus…..(though i have nothing into which i can inject anything) So I remain perplexed about her thoughts on a year of leukine alone.
Again, I have to ask about the use of IPi at 3mg/kg…and/or the possibity of a PD1 trial….(one i see is with placebo, and so far no where near me, so not sure about traveling to take a chacne of getting placebo……vs doing leukine…
I have never had any LN removed so not sure if that has any imapct on possible trials….
Just had one last RAD CONSULT this morning…..have to decide if I will do the 600 greys over 5 treaments….or 240 over 20 treatments…both of which are NCCN apprved treament plans for locally recurrent disease.
ugh, stil tough decisons….
Thank you again for taking the time to write!
All the best,
jenny
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- December 2, 2015 at 3:56 am
Jenny,
I had raditation to my neck following a parotidectomy for stage 3c melanoma. I had a total of 48 gray (4,800 rads) in 20 fractions of IMRT, 5 days per week for 4 weeks. This was in 2013, no other adjuvant therapy besides interferon was available and I felt the benefit of interferon was not well demonstrated, so declined it.
I don't know where on your neck the lesions were, nor the details of your proposed radiation treatment, but head & neck radiation therapy is not without significant side effects and possible complications.
Treatment prrotocols differ, and reactions vary, but I ended up losing 30 pounds over the month of radiation, lost my sensation of taste for about 6 months, had severe pharyngitis making it difficult to swallow and felt pretty wiped out. It took a long time to recover and now, over 2 years out, I still have some residual problems from radiation therapy.
Was it worth it? Well, I'm still here, although I had widespread, aggressive recurrences within 6 months of finishing radiation. I was advanced stage 4 by December, 2013 and started the ipi/nivo trial January, 2014. Long story short – I was, luckily, a complete responder and have been NED since 3 months into the trial.
I am not advising you, one way or the other, regarding radiation therapy. Just get as much information as possible, and go into it with your eyes wide open. Good luck.
dvd
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- December 2, 2015 at 3:56 am
Jenny,
I had raditation to my neck following a parotidectomy for stage 3c melanoma. I had a total of 48 gray (4,800 rads) in 20 fractions of IMRT, 5 days per week for 4 weeks. This was in 2013, no other adjuvant therapy besides interferon was available and I felt the benefit of interferon was not well demonstrated, so declined it.
I don't know where on your neck the lesions were, nor the details of your proposed radiation treatment, but head & neck radiation therapy is not without significant side effects and possible complications.
Treatment prrotocols differ, and reactions vary, but I ended up losing 30 pounds over the month of radiation, lost my sensation of taste for about 6 months, had severe pharyngitis making it difficult to swallow and felt pretty wiped out. It took a long time to recover and now, over 2 years out, I still have some residual problems from radiation therapy.
Was it worth it? Well, I'm still here, although I had widespread, aggressive recurrences within 6 months of finishing radiation. I was advanced stage 4 by December, 2013 and started the ipi/nivo trial January, 2014. Long story short – I was, luckily, a complete responder and have been NED since 3 months into the trial.
I am not advising you, one way or the other, regarding radiation therapy. Just get as much information as possible, and go into it with your eyes wide open. Good luck.
dvd
-
- December 2, 2015 at 3:56 am
Jenny,
I had raditation to my neck following a parotidectomy for stage 3c melanoma. I had a total of 48 gray (4,800 rads) in 20 fractions of IMRT, 5 days per week for 4 weeks. This was in 2013, no other adjuvant therapy besides interferon was available and I felt the benefit of interferon was not well demonstrated, so declined it.
I don't know where on your neck the lesions were, nor the details of your proposed radiation treatment, but head & neck radiation therapy is not without significant side effects and possible complications.
Treatment prrotocols differ, and reactions vary, but I ended up losing 30 pounds over the month of radiation, lost my sensation of taste for about 6 months, had severe pharyngitis making it difficult to swallow and felt pretty wiped out. It took a long time to recover and now, over 2 years out, I still have some residual problems from radiation therapy.
Was it worth it? Well, I'm still here, although I had widespread, aggressive recurrences within 6 months of finishing radiation. I was advanced stage 4 by December, 2013 and started the ipi/nivo trial January, 2014. Long story short – I was, luckily, a complete responder and have been NED since 3 months into the trial.
I am not advising you, one way or the other, regarding radiation therapy. Just get as much information as possible, and go into it with your eyes wide open. Good luck.
dvd
-
- December 1, 2015 at 4:47 pm
Hi Celeste-
I continue to be amazed at the time you give to this group and thoughtful responses you provide.
I will certainly discuss all of this again with Dr. Pavlick…..in reading everything in your post, and the subsequent links, i dont see much written on the use of Leukine alone…..some comments about its helping the side effects of IPI whcen used in combination, or T-Vec when combined with virus…..(though i have nothing into which i can inject anything) So I remain perplexed about her thoughts on a year of leukine alone.
Again, I have to ask about the use of IPi at 3mg/kg…and/or the possibity of a PD1 trial….(one i see is with placebo, and so far no where near me, so not sure about traveling to take a chacne of getting placebo……vs doing leukine…
I have never had any LN removed so not sure if that has any imapct on possible trials….
Just had one last RAD CONSULT this morning…..have to decide if I will do the 600 greys over 5 treaments….or 240 over 20 treatments…both of which are NCCN apprved treament plans for locally recurrent disease.
ugh, stil tough decisons….
Thank you again for taking the time to write!
All the best,
jenny
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- December 1, 2015 at 12:56 am
Hi jenny22,
Not sure where you are but i know the pembro vs placebo is happening or going to at Moffitt in Florida. They contacted me a month or 2 ago about it and said it was available there.
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