› Forums › General Melanoma Community › Too many treatment choices – how to decide?
- This topic has 27 replies, 6 voices, and was last updated 10 years ago by
palmspringswalt.
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- May 8, 2014 at 6:25 pm
Hi all,
I am Stage IV with mets in 1 lung (13mm, 6mm, 3mm). Unknown primary, and no mets anywhere else (yet). BRAF V600E
I have seen several doctors all of whom want to start treatment right away but I am still weighing my options. Here are the treatment paths that have been offered to me:
1) Yervoy followed by Anti – PD1 if Yervoy fails – (Dr. Steven O'Day, Beverly Hills, CA)
2) Clinical Trial # CMEK162B2301 – MEK162 and LGX818 BRAF inhibitor OR Vemurafinib (blind study) – Dr. John Fruehauf, UCI Medical center
3) Stem Cell vaccination trial (don't know number but here's a link to their site describing the trial) http://www.californiastemcell.com/cancer-stem-cell/ – I don't have a doctor for this one yet, just found it, but it looks promising (either 67% or 50% success rate, I'm unclear. Seems way too high). I have been emailing with the trial contacts who have forwarded my information to the head doc. Waiting to hear back.
4) Surgical removal of all mets (lung surgery) – Doctor Shigeru Chino, (he removed my first met in 2012 from my right lung – which was misdiagnosed)
Apart from the surgical excision in 2012, I am a melanoma treatment virgin. Does anyone have experience with any of these treatments? Is there a particular sequence I should try them? From what I've read on their site, option 3 is the "easiest" on the patient (fewest side-effects) and seems to have a reasonable success rate. I just haven't read/heard much about it. Option 1 seems good in that I know Dr. O'Day has loads of experience with these drugs. But I'm concerned about my newly super-charged immune system going rogue (I'm deaf because of autoimmune problems).
I am currently seeing a Holistic practitioner of Naturopathic Oncology (Dr. Kristin Stiles Green, N.M.D., Thousand Oaks, CA) who is working on getting me to optimal overall health prior to starting any drug treatment. She will also work with me during treatment in an effort to minimize any side effects and keep me otherwise healthy.
This is such an important decision and I just don't feel "qualified" to make it. My loved ones just look on helplessly and tell me its my decision. I'd welcome any input/advice/personal relevant experiences. I will make my own decision for ultimately what feels right for me, but I would like more input from others before deciding.
Thanks so much for your help, everyone!
Maggie
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- May 8, 2014 at 6:37 pm
Oops, I just found the study for number 3 and they aren't recruiting patients yet, plus it appears you need to have already tried something else first. Here's the link to their trial http://clinicaltrials.gov/show/NCT01875653 . So option 3 is out (for now).
Maggie
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- May 8, 2014 at 6:37 pm
Oops, I just found the study for number 3 and they aren't recruiting patients yet, plus it appears you need to have already tried something else first. Here's the link to their trial http://clinicaltrials.gov/show/NCT01875653 . So option 3 is out (for now).
Maggie
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- May 8, 2014 at 6:37 pm
Oops, I just found the study for number 3 and they aren't recruiting patients yet, plus it appears you need to have already tried something else first. Here's the link to their trial http://clinicaltrials.gov/show/NCT01875653 . So option 3 is out (for now).
Maggie
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- May 8, 2014 at 7:55 pm
I agree with number 4… with melanoma, cutting it out tends to be the best option when possible. I would hold off on any BRAF inhibitor unless you have a high tumor burden… these tend to work very well and quickly relative to reducing tumor burden but they have limited effectiveness. Keep BRAF inhibitor in your back pocket as an option if needed later.
If they can cut the melanoma out of your lung and put you back into the NED category, you could potentially hold off on any drug treatments until they are needed. Given the autoimmune concern, I would be skeptical of trying Yervoy. Keep in mind that Merck's anti-PD1 drug is likely to be approved by the FDA later in the year.
Kevin
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- May 8, 2014 at 7:55 pm
I agree with number 4… with melanoma, cutting it out tends to be the best option when possible. I would hold off on any BRAF inhibitor unless you have a high tumor burden… these tend to work very well and quickly relative to reducing tumor burden but they have limited effectiveness. Keep BRAF inhibitor in your back pocket as an option if needed later.
If they can cut the melanoma out of your lung and put you back into the NED category, you could potentially hold off on any drug treatments until they are needed. Given the autoimmune concern, I would be skeptical of trying Yervoy. Keep in mind that Merck's anti-PD1 drug is likely to be approved by the FDA later in the year.
Kevin
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- May 8, 2014 at 7:55 pm
I agree with number 4… with melanoma, cutting it out tends to be the best option when possible. I would hold off on any BRAF inhibitor unless you have a high tumor burden… these tend to work very well and quickly relative to reducing tumor burden but they have limited effectiveness. Keep BRAF inhibitor in your back pocket as an option if needed later.
If they can cut the melanoma out of your lung and put you back into the NED category, you could potentially hold off on any drug treatments until they are needed. Given the autoimmune concern, I would be skeptical of trying Yervoy. Keep in mind that Merck's anti-PD1 drug is likely to be approved by the FDA later in the year.
Kevin
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- May 9, 2014 at 2:33 pm
Hi Maggie – I agree with those on here who said surgical resection is best primary course of action – this has been our oncologist's consistent point of view. Good luck in making your decision and your decided-upon treatment. Are you under the care of a melanoma specialist? He or she should be able to explain the pros and cons of each approach and help guide you in your decision-making. Take care, Kimberly
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- May 10, 2014 at 1:59 am
Hi everyone,
Thank you so much for all of your replies. I am surprised at how unanamous you all are! I have seen several Melanoma specialists and they have advised that I leave the mets in place and pursue a systemic treatment. They caution me that if I remove the mets first, we won't know if I've selected the "right" treatment or not as quickly as possible. As they measure my mets after treatment and if they aren't improving, they'll know to switch me to something else. Does that make sense? I confess, I like to have an excuse to avoid more lung surgery. I had my right upper lobe removed in 2012 and it took me a long time to get back to "normal". In the meantime, I stopped exercising which is bad when you're fighting cancer. Can I still breathe enough for an active lifestyle if they remove more of my lungs? Of course, if that's the best way to fight this cancer, then I should do it. Blech, lung surgery. Thanks again for the input everyone.
Maggie
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- May 10, 2014 at 1:59 am
Hi everyone,
Thank you so much for all of your replies. I am surprised at how unanamous you all are! I have seen several Melanoma specialists and they have advised that I leave the mets in place and pursue a systemic treatment. They caution me that if I remove the mets first, we won't know if I've selected the "right" treatment or not as quickly as possible. As they measure my mets after treatment and if they aren't improving, they'll know to switch me to something else. Does that make sense? I confess, I like to have an excuse to avoid more lung surgery. I had my right upper lobe removed in 2012 and it took me a long time to get back to "normal". In the meantime, I stopped exercising which is bad when you're fighting cancer. Can I still breathe enough for an active lifestyle if they remove more of my lungs? Of course, if that's the best way to fight this cancer, then I should do it. Blech, lung surgery. Thanks again for the input everyone.
Maggie
-
- May 10, 2014 at 1:59 am
Hi everyone,
Thank you so much for all of your replies. I am surprised at how unanamous you all are! I have seen several Melanoma specialists and they have advised that I leave the mets in place and pursue a systemic treatment. They caution me that if I remove the mets first, we won't know if I've selected the "right" treatment or not as quickly as possible. As they measure my mets after treatment and if they aren't improving, they'll know to switch me to something else. Does that make sense? I confess, I like to have an excuse to avoid more lung surgery. I had my right upper lobe removed in 2012 and it took me a long time to get back to "normal". In the meantime, I stopped exercising which is bad when you're fighting cancer. Can I still breathe enough for an active lifestyle if they remove more of my lungs? Of course, if that's the best way to fight this cancer, then I should do it. Blech, lung surgery. Thanks again for the input everyone.
Maggie
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- May 10, 2014 at 5:52 pm
Have you ever heard the old adage: "if the only tool you have is a hammer, every problem you see is a nail." I'm sure that your oncologists truly believe that it's a good idea to leave your tumors in place so you can see if your systemic treatment is working. Somehow, I doubt that a surgical oncologist would give you the same advice.
There are 2 main reasons to have your tumors surgically removed whenever possible: 1) surgery is the only treatment that is guaranteed to get rid of the tumors–period– and 2) research in the field of melanoma treatment is proceeding very, very quickly (as these things go). It is often to the patient's advantage to be able to hold off on any systemic treatment for a year or two because something even newer and better may be available then.
None of the options you have listed are "wrong". They are all quite reasonable and any one of them may well be the right one for you. And certainly, if you really don't want to go through another lung surgery or if another lung surgery will adversely impact your quality of life, then surgery is not for you. But I do hope that you talk to a surgical oncologist about your options and about what to expect after surgery before you make your final decision.
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- May 10, 2014 at 5:52 pm
Have you ever heard the old adage: "if the only tool you have is a hammer, every problem you see is a nail." I'm sure that your oncologists truly believe that it's a good idea to leave your tumors in place so you can see if your systemic treatment is working. Somehow, I doubt that a surgical oncologist would give you the same advice.
There are 2 main reasons to have your tumors surgically removed whenever possible: 1) surgery is the only treatment that is guaranteed to get rid of the tumors–period– and 2) research in the field of melanoma treatment is proceeding very, very quickly (as these things go). It is often to the patient's advantage to be able to hold off on any systemic treatment for a year or two because something even newer and better may be available then.
None of the options you have listed are "wrong". They are all quite reasonable and any one of them may well be the right one for you. And certainly, if you really don't want to go through another lung surgery or if another lung surgery will adversely impact your quality of life, then surgery is not for you. But I do hope that you talk to a surgical oncologist about your options and about what to expect after surgery before you make your final decision.
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- May 12, 2014 at 5:28 pm
This is what I find so interesting. It was actually a surgical oncologist that advised me to leave the mets in place and pursue systemic treatment. He noted that as I was already Stage IV, then it is already systemic so I should pursue systemic treatement. But I have also read that the whack-a-mole approach with surgery can be very effective. I just want it all to be gone. I first had one spot in my right lung and we removed the lobe. I now have three spots in the left lung. My thoracic surgeon thought he "probably" could get them all. But then how long before I have another one or three in one or both lungs again? How often can I keep having lung surgery before I can't breathe anymore?
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- May 12, 2014 at 5:28 pm
This is what I find so interesting. It was actually a surgical oncologist that advised me to leave the mets in place and pursue systemic treatment. He noted that as I was already Stage IV, then it is already systemic so I should pursue systemic treatement. But I have also read that the whack-a-mole approach with surgery can be very effective. I just want it all to be gone. I first had one spot in my right lung and we removed the lobe. I now have three spots in the left lung. My thoracic surgeon thought he "probably" could get them all. But then how long before I have another one or three in one or both lungs again? How often can I keep having lung surgery before I can't breathe anymore?
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- May 13, 2014 at 2:44 am
You are asking all the right questions.
Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case. I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.) In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1. I believe in my case that was the correct decision. Again it's an important discussion you need to have with Dr. O'Day.
You also need to discuss your concern about your deafness and immune system with Dr. O'Day. Certainly ipi or PD1 will put your immune system in high gear if you are a responder.
It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi. It could be because that is what he has available right now with PD1. You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi. Ask him if he knows where there are PD1 seats open.
From experience I understand what you are going through right now. You need to continue discussion with your docs until you are comfortable with your treatment decision!
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- May 13, 2014 at 2:44 am
You are asking all the right questions.
Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case. I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.) In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1. I believe in my case that was the correct decision. Again it's an important discussion you need to have with Dr. O'Day.
You also need to discuss your concern about your deafness and immune system with Dr. O'Day. Certainly ipi or PD1 will put your immune system in high gear if you are a responder.
It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi. It could be because that is what he has available right now with PD1. You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi. Ask him if he knows where there are PD1 seats open.
From experience I understand what you are going through right now. You need to continue discussion with your docs until you are comfortable with your treatment decision!
-
- May 13, 2014 at 2:44 am
You are asking all the right questions.
Dr. Steven O'Day has loads of experience so you need to discuss with him the subject of systemic treatment versus surgery for your specific case. I'm not a patient of Dr. O'Day (I go to The Angeles Cliniic and am seeing Dr. Boasberg.) In my case Dr. Boasberg talked with my surgical oncologist and both recommended no surgery but immediately start systemic treatment with PD1. I believe in my case that was the correct decision. Again it's an important discussion you need to have with Dr. O'Day.
You also need to discuss your concern about your deafness and immune system with Dr. O'Day. Certainly ipi or PD1 will put your immune system in high gear if you are a responder.
It's not clear to me why Dr. O'Day wants to start you on ipi and then PD1 if you fail ipi. It could be because that is what he has available right now with PD1. You might want to ask him why not start immediately on PD1 since the side effects are less and the outcomes better (for more people) than with ipi. Ask him if he knows where there are PD1 seats open.
From experience I understand what you are going through right now. You need to continue discussion with your docs until you are comfortable with your treatment decision!
-
- May 12, 2014 at 5:28 pm
This is what I find so interesting. It was actually a surgical oncologist that advised me to leave the mets in place and pursue systemic treatment. He noted that as I was already Stage IV, then it is already systemic so I should pursue systemic treatement. But I have also read that the whack-a-mole approach with surgery can be very effective. I just want it all to be gone. I first had one spot in my right lung and we removed the lobe. I now have three spots in the left lung. My thoracic surgeon thought he "probably" could get them all. But then how long before I have another one or three in one or both lungs again? How often can I keep having lung surgery before I can't breathe anymore?
-
- May 10, 2014 at 5:52 pm
Have you ever heard the old adage: "if the only tool you have is a hammer, every problem you see is a nail." I'm sure that your oncologists truly believe that it's a good idea to leave your tumors in place so you can see if your systemic treatment is working. Somehow, I doubt that a surgical oncologist would give you the same advice.
There are 2 main reasons to have your tumors surgically removed whenever possible: 1) surgery is the only treatment that is guaranteed to get rid of the tumors–period– and 2) research in the field of melanoma treatment is proceeding very, very quickly (as these things go). It is often to the patient's advantage to be able to hold off on any systemic treatment for a year or two because something even newer and better may be available then.
None of the options you have listed are "wrong". They are all quite reasonable and any one of them may well be the right one for you. And certainly, if you really don't want to go through another lung surgery or if another lung surgery will adversely impact your quality of life, then surgery is not for you. But I do hope that you talk to a surgical oncologist about your options and about what to expect after surgery before you make your final decision.
-
- May 9, 2014 at 2:33 pm
Hi Maggie – I agree with those on here who said surgical resection is best primary course of action – this has been our oncologist's consistent point of view. Good luck in making your decision and your decided-upon treatment. Are you under the care of a melanoma specialist? He or she should be able to explain the pros and cons of each approach and help guide you in your decision-making. Take care, Kimberly
-
- May 9, 2014 at 2:33 pm
Hi Maggie – I agree with those on here who said surgical resection is best primary course of action – this has been our oncologist's consistent point of view. Good luck in making your decision and your decided-upon treatment. Are you under the care of a melanoma specialist? He or she should be able to explain the pros and cons of each approach and help guide you in your decision-making. Take care, Kimberly
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