› Forums › General Melanoma Community › out of options
- This topic has 60 replies, 10 voices, and was last updated 7 years, 8 months ago by
Casitas1.
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- August 15, 2016 at 4:53 pm
got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.
I need help and any suggestions are welcome
-Eva
- Replies
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- August 15, 2016 at 6:13 pm
have you tried getting second opinion? Are you being followed by a specialist?
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- August 15, 2016 at 6:29 pm
Don't give up! – Keep researching and don't settle for hospice if you really want to fight this thing! My mom's doctors told my mom the same thing and we looked for another doctor. We have appointment tomorrow. If that doesnt work out we will look for something else. I am constantly in the internet researching and looking up stuff. Stay educated. I know that you may be discouraged that drugs are working for other people and why not you but you got to believe hat success is possible – for you TOO!
I'm praying for you!
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- August 15, 2016 at 6:29 pm
Don't give up! – Keep researching and don't settle for hospice if you really want to fight this thing! My mom's doctors told my mom the same thing and we looked for another doctor. We have appointment tomorrow. If that doesnt work out we will look for something else. I am constantly in the internet researching and looking up stuff. Stay educated. I know that you may be discouraged that drugs are working for other people and why not you but you got to believe hat success is possible – for you TOO!
I'm praying for you!
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- August 15, 2016 at 6:29 pm
Don't give up! – Keep researching and don't settle for hospice if you really want to fight this thing! My mom's doctors told my mom the same thing and we looked for another doctor. We have appointment tomorrow. If that doesnt work out we will look for something else. I am constantly in the internet researching and looking up stuff. Stay educated. I know that you may be discouraged that drugs are working for other people and why not you but you got to believe hat success is possible – for you TOO!
I'm praying for you!
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- August 15, 2016 at 6:35 pm
someone posted this video on a previous post – check it out! it was so inspirational for me:
http://melanomainternational.org/events-webinar/patient-experience-video…
Also, worth looking into these:
http://www.theangelesclinic.org/Home/SecondOpinionConsultation/tabid/19292/Default.aspx
http://letsgivethanks.blogspot.com/?m=1
Some of the things that I came across while reseraching. Some are testimonials, some are articles and blogs. Just keep looking and most importantly stay positivie. I don't know if you have a support system but make sure to be around people who love you and make you happy and don't be afraid to tell them what you need!
– Much love
Maria
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- August 15, 2016 at 6:35 pm
someone posted this video on a previous post – check it out! it was so inspirational for me:
http://melanomainternational.org/events-webinar/patient-experience-video…
Also, worth looking into these:
http://www.theangelesclinic.org/Home/SecondOpinionConsultation/tabid/19292/Default.aspx
http://letsgivethanks.blogspot.com/?m=1
Some of the things that I came across while reseraching. Some are testimonials, some are articles and blogs. Just keep looking and most importantly stay positivie. I don't know if you have a support system but make sure to be around people who love you and make you happy and don't be afraid to tell them what you need!
– Much love
Maria
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- August 15, 2016 at 6:35 pm
someone posted this video on a previous post – check it out! it was so inspirational for me:
http://melanomainternational.org/events-webinar/patient-experience-video…
Also, worth looking into these:
http://www.theangelesclinic.org/Home/SecondOpinionConsultation/tabid/19292/Default.aspx
http://letsgivethanks.blogspot.com/?m=1
Some of the things that I came across while reseraching. Some are testimonials, some are articles and blogs. Just keep looking and most importantly stay positivie. I don't know if you have a support system but make sure to be around people who love you and make you happy and don't be afraid to tell them what you need!
– Much love
Maria
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- August 15, 2016 at 6:24 pm
Eva, I had failed both ipi/nivo. But responded to Keytruda and now NED. Maybe worth mentioning to yor doc?
Good luck, Paul
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- August 15, 2016 at 7:55 pm
Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.
Thanks,
Maria
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- August 15, 2016 at 7:55 pm
Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.
Thanks,
Maria
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- August 15, 2016 at 7:55 pm
Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.
Thanks,
Maria
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- August 15, 2016 at 11:06 pm
Hi Maria, As far as the differences between Nivo and Keytruda go they are basically the same both are pd-1. Different manufacturers one Merk and the other Bristol Meyers. My doctor told me they are made with different proteins though. From your post it sounds as if your mom had complete response to one tumor with Radiation and Nivo? I had to go thru 3 different opinions before i found my current doctor a Melanoma specialist. Please ask me any questions or check my bio for all my treatments to date.
Best of luck to your Mom, Paul
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- August 15, 2016 at 11:06 pm
Hi Maria, As far as the differences between Nivo and Keytruda go they are basically the same both are pd-1. Different manufacturers one Merk and the other Bristol Meyers. My doctor told me they are made with different proteins though. From your post it sounds as if your mom had complete response to one tumor with Radiation and Nivo? I had to go thru 3 different opinions before i found my current doctor a Melanoma specialist. Please ask me any questions or check my bio for all my treatments to date.
Best of luck to your Mom, Paul
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- August 15, 2016 at 11:06 pm
Hi Maria, As far as the differences between Nivo and Keytruda go they are basically the same both are pd-1. Different manufacturers one Merk and the other Bristol Meyers. My doctor told me they are made with different proteins though. From your post it sounds as if your mom had complete response to one tumor with Radiation and Nivo? I had to go thru 3 different opinions before i found my current doctor a Melanoma specialist. Please ask me any questions or check my bio for all my treatments to date.
Best of luck to your Mom, Paul
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- August 25, 2016 at 4:07 pm
Hi Mike, I started combo in July 2015 and discontinued in Aug.(two infusions) Started Low dose chemo in Dec. 4 doses Had a scan Jan. 2016 that showed bone met and lymph node tumor gone. However soft tissue tumor in cheek had grown by a third. Started Keytruda Jan. 11th 2016 and have done 11 bags and NED after 10.
Hoping this helps, Paul
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- August 25, 2016 at 4:07 pm
Hi Mike, I started combo in July 2015 and discontinued in Aug.(two infusions) Started Low dose chemo in Dec. 4 doses Had a scan Jan. 2016 that showed bone met and lymph node tumor gone. However soft tissue tumor in cheek had grown by a third. Started Keytruda Jan. 11th 2016 and have done 11 bags and NED after 10.
Hoping this helps, Paul
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- August 25, 2016 at 4:07 pm
Hi Mike, I started combo in July 2015 and discontinued in Aug.(two infusions) Started Low dose chemo in Dec. 4 doses Had a scan Jan. 2016 that showed bone met and lymph node tumor gone. However soft tissue tumor in cheek had grown by a third. Started Keytruda Jan. 11th 2016 and have done 11 bags and NED after 10.
Hoping this helps, Paul
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- August 15, 2016 at 9:50 pm
Eva, please don’t give up! The mention of hospice made me tear up. I have been reading your previous posts all the way back to 2014. Seems you did respond to BRAF/MEK, if only for a few months. I am by no means an expert in this but it seems people can go back on those inhibitors and respond again. This would buy you some time to look for other options. I heard one doctor on OncLive talk about using the inhibitors in this fashion.Praying for you.
Annie
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- August 15, 2016 at 9:50 pm
Eva, please don’t give up! The mention of hospice made me tear up. I have been reading your previous posts all the way back to 2014. Seems you did respond to BRAF/MEK, if only for a few months. I am by no means an expert in this but it seems people can go back on those inhibitors and respond again. This would buy you some time to look for other options. I heard one doctor on OncLive talk about using the inhibitors in this fashion.Praying for you.
Annie
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- August 15, 2016 at 9:50 pm
Eva, please don’t give up! The mention of hospice made me tear up. I have been reading your previous posts all the way back to 2014. Seems you did respond to BRAF/MEK, if only for a few months. I am by no means an expert in this but it seems people can go back on those inhibitors and respond again. This would buy you some time to look for other options. I heard one doctor on OncLive talk about using the inhibitors in this fashion.Praying for you.
Annie
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- August 16, 2016 at 6:10 am
The clinical trial finder service here at MRF is actually surprisingly good at finding trials, including obscure ones. At least it was a few years ago when I tried it. They found stuff I'd never heard of, in a very narrow situation where I thought I qualified for nothing. It takes a little while to fill in the info. I think it's RN's who do the search, and I'm guessing they may have better tools at their disposal than searching clinicaltrials.gov as it is.
https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
I hate that feeling, "no options". I hope you get to a good next step in your plan. -Kyle
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- August 16, 2016 at 6:10 am
The clinical trial finder service here at MRF is actually surprisingly good at finding trials, including obscure ones. At least it was a few years ago when I tried it. They found stuff I'd never heard of, in a very narrow situation where I thought I qualified for nothing. It takes a little while to fill in the info. I think it's RN's who do the search, and I'm guessing they may have better tools at their disposal than searching clinicaltrials.gov as it is.
https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
I hate that feeling, "no options". I hope you get to a good next step in your plan. -Kyle
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- August 16, 2016 at 6:10 am
The clinical trial finder service here at MRF is actually surprisingly good at finding trials, including obscure ones. At least it was a few years ago when I tried it. They found stuff I'd never heard of, in a very narrow situation where I thought I qualified for nothing. It takes a little while to fill in the info. I think it's RN's who do the search, and I'm guessing they may have better tools at their disposal than searching clinicaltrials.gov as it is.
https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
I hate that feeling, "no options". I hope you get to a good next step in your plan. -Kyle
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- August 18, 2016 at 4:59 am
Eva,
If you're off the combo, has your cluster of issues eased off any? The severe back pain, constipation and stomach pain that put you in the hospital and stopped you from eating?
If you've stopped treatment and they've eased off, I guess you might be leery of another immunotherapy. Do you know if it was the IPI, the PD1 or the combo that was giving you those symptoms?
The thing I liked about the clincal trial finder service here is that the woman I talked to on the other end of the line knew medical terminology and exclusion criteria in part because she was a nurse IIRC. I also believe the service is paid for in part by the pharma companies. That would motivate them to provide a good matching service because they're trying to fill trials. It seemed like they filtered out things that sounded good but I couldn't have done for one reason or another. I think everything they gave me looked like I would probably qualify.
Trying to figure out which of the trials is promising is not something I know. Something that sounds innocuous might turn out to be the next blockbuster. Something that sounds great might fizzle. Something tha might fizzle for everyone else might work great for you.
I hope you are getting some relief now. I hope you turn up some possiblities for your next step.
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- August 18, 2016 at 4:59 am
Eva,
If you're off the combo, has your cluster of issues eased off any? The severe back pain, constipation and stomach pain that put you in the hospital and stopped you from eating?
If you've stopped treatment and they've eased off, I guess you might be leery of another immunotherapy. Do you know if it was the IPI, the PD1 or the combo that was giving you those symptoms?
The thing I liked about the clincal trial finder service here is that the woman I talked to on the other end of the line knew medical terminology and exclusion criteria in part because she was a nurse IIRC. I also believe the service is paid for in part by the pharma companies. That would motivate them to provide a good matching service because they're trying to fill trials. It seemed like they filtered out things that sounded good but I couldn't have done for one reason or another. I think everything they gave me looked like I would probably qualify.
Trying to figure out which of the trials is promising is not something I know. Something that sounds innocuous might turn out to be the next blockbuster. Something that sounds great might fizzle. Something tha might fizzle for everyone else might work great for you.
I hope you are getting some relief now. I hope you turn up some possiblities for your next step.
-
- August 18, 2016 at 4:59 am
Eva,
If you're off the combo, has your cluster of issues eased off any? The severe back pain, constipation and stomach pain that put you in the hospital and stopped you from eating?
If you've stopped treatment and they've eased off, I guess you might be leery of another immunotherapy. Do you know if it was the IPI, the PD1 or the combo that was giving you those symptoms?
The thing I liked about the clincal trial finder service here is that the woman I talked to on the other end of the line knew medical terminology and exclusion criteria in part because she was a nurse IIRC. I also believe the service is paid for in part by the pharma companies. That would motivate them to provide a good matching service because they're trying to fill trials. It seemed like they filtered out things that sounded good but I couldn't have done for one reason or another. I think everything they gave me looked like I would probably qualify.
Trying to figure out which of the trials is promising is not something I know. Something that sounds innocuous might turn out to be the next blockbuster. Something that sounds great might fizzle. Something tha might fizzle for everyone else might work great for you.
I hope you are getting some relief now. I hope you turn up some possiblities for your next step.
-
- August 19, 2016 at 1:11 pm
Eva, I don't have any suggestions for you like so many others on this board, who are offering practical treatment, trial, and physician options. I do hope you and/or your support team are exploring all of them. I just wanted to reach out and let you know that you have been in my thoughts and prayers every day since I read your post. So many hearts are joining yours to keep you strong…and strategic. Toward that end, I hope you've had a chance to get a second or third opinion – alternate strategies – to get you back on a healing path…
((((((HUGS))))))
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- August 19, 2016 at 1:11 pm
Eva, I don't have any suggestions for you like so many others on this board, who are offering practical treatment, trial, and physician options. I do hope you and/or your support team are exploring all of them. I just wanted to reach out and let you know that you have been in my thoughts and prayers every day since I read your post. So many hearts are joining yours to keep you strong…and strategic. Toward that end, I hope you've had a chance to get a second or third opinion – alternate strategies – to get you back on a healing path…
((((((HUGS))))))
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- August 19, 2016 at 1:11 pm
Eva, I don't have any suggestions for you like so many others on this board, who are offering practical treatment, trial, and physician options. I do hope you and/or your support team are exploring all of them. I just wanted to reach out and let you know that you have been in my thoughts and prayers every day since I read your post. So many hearts are joining yours to keep you strong…and strategic. Toward that end, I hope you've had a chance to get a second or third opinion – alternate strategies – to get you back on a healing path…
((((((HUGS))))))
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- August 23, 2016 at 1:54 am
Eva,
Have any of your doctors mentioned the NCI Match trial. I don't know much about it but apparently it is a trial where they take patients who have not responded to other treatments and do a complete genetic test of their disease. They then taylor the treatment to the unique genetic traits. Here is the link to the trial. It is being conducted at nearly a 1000 sites.
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
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- August 23, 2016 at 1:54 am
Eva,
Have any of your doctors mentioned the NCI Match trial. I don't know much about it but apparently it is a trial where they take patients who have not responded to other treatments and do a complete genetic test of their disease. They then taylor the treatment to the unique genetic traits. Here is the link to the trial. It is being conducted at nearly a 1000 sites.
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
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- August 23, 2016 at 1:54 am
Eva,
Have any of your doctors mentioned the NCI Match trial. I don't know much about it but apparently it is a trial where they take patients who have not responded to other treatments and do a complete genetic test of their disease. They then taylor the treatment to the unique genetic traits. Here is the link to the trial. It is being conducted at nearly a 1000 sites.
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
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