› Forums › General Melanoma Community › Not Again!
- This topic has 45 replies, 9 voices, and was last updated 10 years, 10 months ago by
JoshF.
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- January 15, 2015 at 5:43 pm
Got the call from my oncologist. Path didn't have all testing done but confirmed nodule in scar tissue is indeed melanoma with size <5mm and possibly lymph tissue;no other details. I've been going crazy so she called to see where they were in testing.
Pet Scan scheduled Wednesday, she wants more healing on cheek. I'm so disappointed… I really thought I was responder to ipi and/or IL2. I did Prometheus Labs trial combo of the two therapies. I know I have tests coming up but what do I do? What if it's just local recurrence? If it spread do I just go to PD-1? I'm sure that's what onc will want to do…I do see melanoma specialist but would seeing one with national reputation be better? Who would you all recommend? Wolchok…Weber etc? I've gotten so much support and advice from this forum…it's just hard when you're stuck in the unknown for 3rd time. Thanks to all….
Josh
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- January 15, 2015 at 7:31 pm
So sorry, Josh. Was really hoping for a different result. Are you BRAF positive? If so, have you done any BRAF inhibitors? C
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- January 15, 2015 at 8:41 pm
Josh, sorry to hear. I saw Wolchok for a consultation on my treatment path/options and he is great (though it does take some time to get an appointment). Now also may be a good time to hit the refresh button on available trials. My recollection is that you are in Chicago–I recall Artie posting about a PD-1/anti-LAG trial in Chicago. You also might consider a trip to the NIH for a consult (for TIL), particularly given that you were able to tolerate IL-2 well. Not sure that I would go for TIL before PD-1, but that's an individual choice.
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- January 15, 2015 at 8:41 pm
Josh, sorry to hear. I saw Wolchok for a consultation on my treatment path/options and he is great (though it does take some time to get an appointment). Now also may be a good time to hit the refresh button on available trials. My recollection is that you are in Chicago–I recall Artie posting about a PD-1/anti-LAG trial in Chicago. You also might consider a trip to the NIH for a consult (for TIL), particularly given that you were able to tolerate IL-2 well. Not sure that I would go for TIL before PD-1, but that's an individual choice.
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- January 15, 2015 at 8:41 pm
Josh, sorry to hear. I saw Wolchok for a consultation on my treatment path/options and he is great (though it does take some time to get an appointment). Now also may be a good time to hit the refresh button on available trials. My recollection is that you are in Chicago–I recall Artie posting about a PD-1/anti-LAG trial in Chicago. You also might consider a trip to the NIH for a consult (for TIL), particularly given that you were able to tolerate IL-2 well. Not sure that I would go for TIL before PD-1, but that's an individual choice.
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- January 16, 2015 at 2:13 pm
Thanks Mat…sound advice and much much appreciated. I've often thought about TIL, very interested in that but guessing most would advise to go PD-1first though I'm going to look into that PD-1/anti-LAG. I'm assuming once you do say a PD-1 you can never go back and do a trial like that….assuming I'm right in saying that. So would I better off going that direction? I'm already trying to schedule another opinion with Tom Gajewski at University of Chicago. He specializes in melanoma and has done research and well respected in field. He's just not easy to get into to see. Hopefully Pet Scan is clear….though I'd want to look inot adjuvant or something….probably not easy to find.
Josh
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- January 16, 2015 at 2:13 pm
Thanks Mat…sound advice and much much appreciated. I've often thought about TIL, very interested in that but guessing most would advise to go PD-1first though I'm going to look into that PD-1/anti-LAG. I'm assuming once you do say a PD-1 you can never go back and do a trial like that….assuming I'm right in saying that. So would I better off going that direction? I'm already trying to schedule another opinion with Tom Gajewski at University of Chicago. He specializes in melanoma and has done research and well respected in field. He's just not easy to get into to see. Hopefully Pet Scan is clear….though I'd want to look inot adjuvant or something….probably not easy to find.
Josh
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- January 16, 2015 at 2:13 pm
Thanks Mat…sound advice and much much appreciated. I've often thought about TIL, very interested in that but guessing most would advise to go PD-1first though I'm going to look into that PD-1/anti-LAG. I'm assuming once you do say a PD-1 you can never go back and do a trial like that….assuming I'm right in saying that. So would I better off going that direction? I'm already trying to schedule another opinion with Tom Gajewski at University of Chicago. He specializes in melanoma and has done research and well respected in field. He's just not easy to get into to see. Hopefully Pet Scan is clear….though I'd want to look inot adjuvant or something….probably not easy to find.
Josh
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- January 15, 2015 at 8:49 pm
Hi Josh,
this has to be very disappointing. Sorry to hear it. I and I believe many on this,board admire you for fighting your own battle, but also for the support you've given many others.
Li don't know where you're being treated and from the different therapies offered, it appears they are aggressive. I am a patient of Dr. Wolchock and I can tell you I couldn't be more pleased with him as a physician, researcher and a decent human being. I fly in from Atlanta twice yearly for my exam. With the recurrence, you might take comfort in getting the opinion of a different specialist in another institution and if you like favor their care plan opt to have further treatment at that facility. Always good to have options!!
All the best Josh!
Stan
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- January 15, 2015 at 8:49 pm
Hi Josh,
this has to be very disappointing. Sorry to hear it. I and I believe many on this,board admire you for fighting your own battle, but also for the support you've given many others.
Li don't know where you're being treated and from the different therapies offered, it appears they are aggressive. I am a patient of Dr. Wolchock and I can tell you I couldn't be more pleased with him as a physician, researcher and a decent human being. I fly in from Atlanta twice yearly for my exam. With the recurrence, you might take comfort in getting the opinion of a different specialist in another institution and if you like favor their care plan opt to have further treatment at that facility. Always good to have options!!
All the best Josh!
Stan
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- January 15, 2015 at 8:49 pm
Hi Josh,
this has to be very disappointing. Sorry to hear it. I and I believe many on this,board admire you for fighting your own battle, but also for the support you've given many others.
Li don't know where you're being treated and from the different therapies offered, it appears they are aggressive. I am a patient of Dr. Wolchock and I can tell you I couldn't be more pleased with him as a physician, researcher and a decent human being. I fly in from Atlanta twice yearly for my exam. With the recurrence, you might take comfort in getting the opinion of a different specialist in another institution and if you like favor their care plan opt to have further treatment at that facility. Always good to have options!!
All the best Josh!
Stan
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- January 15, 2015 at 8:50 pm
Well, Josh if BRAF negative, you would definitely qualify for anti-PD1 right away if you have spread. I think Mat offers some good advice as well. Wolchok is great…and obviously I think a lot of Weber. You have many good options near you. I would not add the additional work of travel to your treatment plan if you could help it. Hang in there. C
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- January 15, 2015 at 8:50 pm
Well, Josh if BRAF negative, you would definitely qualify for anti-PD1 right away if you have spread. I think Mat offers some good advice as well. Wolchok is great…and obviously I think a lot of Weber. You have many good options near you. I would not add the additional work of travel to your treatment plan if you could help it. Hang in there. C
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- January 15, 2015 at 8:50 pm
Well, Josh if BRAF negative, you would definitely qualify for anti-PD1 right away if you have spread. I think Mat offers some good advice as well. Wolchok is great…and obviously I think a lot of Weber. You have many good options near you. I would not add the additional work of travel to your treatment plan if you could help it. Hang in there. C
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- January 15, 2015 at 9:18 pm
So sorry Josh. Try to stay positive. I am glad there are options for you.
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- January 15, 2015 at 9:18 pm
So sorry Josh. Try to stay positive. I am glad there are options for you.
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- January 15, 2015 at 9:18 pm
So sorry Josh. Try to stay positive. I am glad there are options for you.
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- January 17, 2015 at 2:19 pm
Hi Celeste-
Dr Weber was instrumental in PD-1 right? I guess my question would be since I did have ipi and did respond…is there a better PD-1 for people who've had ipi responded but not a durable response? I know there was previous discussion but I can't locate it. I'm just fried.Also guessing I'm not eligible for ipi/pd-1 combo due to being treated with ipi already.
Josh
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- January 17, 2015 at 2:19 pm
Hi Celeste-
Dr Weber was instrumental in PD-1 right? I guess my question would be since I did have ipi and did respond…is there a better PD-1 for people who've had ipi responded but not a durable response? I know there was previous discussion but I can't locate it. I'm just fried.Also guessing I'm not eligible for ipi/pd-1 combo due to being treated with ipi already.
Josh
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- January 17, 2015 at 4:58 pm
Hey Josh,
Neither anti-PD1 product Nivolumab (now Opdivo) nor Pembrolizumab (now Keytruda) have proven to be significantly more effective in folks who have had prior ipi, no matter if they responded or not. Eventually, we may know otherwise, but currently the response rates following ipi are basically the same. Yes, the ipi/anti-PD1 combo trials that I know of do have prior ipi as an exclusion. However, you can always recheck that on the clinicaltrials.gov website. The positive thing that you have, that I did not, is the fact that both anti-PD1 products are currently FDA approved and therefore available to any patient who has failed ipi and BRAFi (if BRAF positive). You can take them without the need of participation in a clinical trial. So, yes…for me, Weber (who is very knowledgeable and whom I would recommend to anyone with no hesitation!) was critical for my access to nivo as he was running the trial in Tampa that I joined. However, you should be able to access either anti-PD1 product nearer to home if you do have spread. If you are NED after this surgery that does put you in a good, but difficult position. There are still no approved treatments for NED patients other than interferon. However, there are NED trials available, though finding them, sorting through them, and then gaining access is a challenge. Hang in there, Celeste
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- January 17, 2015 at 4:58 pm
Hey Josh,
Neither anti-PD1 product Nivolumab (now Opdivo) nor Pembrolizumab (now Keytruda) have proven to be significantly more effective in folks who have had prior ipi, no matter if they responded or not. Eventually, we may know otherwise, but currently the response rates following ipi are basically the same. Yes, the ipi/anti-PD1 combo trials that I know of do have prior ipi as an exclusion. However, you can always recheck that on the clinicaltrials.gov website. The positive thing that you have, that I did not, is the fact that both anti-PD1 products are currently FDA approved and therefore available to any patient who has failed ipi and BRAFi (if BRAF positive). You can take them without the need of participation in a clinical trial. So, yes…for me, Weber (who is very knowledgeable and whom I would recommend to anyone with no hesitation!) was critical for my access to nivo as he was running the trial in Tampa that I joined. However, you should be able to access either anti-PD1 product nearer to home if you do have spread. If you are NED after this surgery that does put you in a good, but difficult position. There are still no approved treatments for NED patients other than interferon. However, there are NED trials available, though finding them, sorting through them, and then gaining access is a challenge. Hang in there, Celeste
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- January 17, 2015 at 6:46 pm
Thanks a ton Celeste…really appreciate it. If things don't go my way Wednesday then I'm guessing PD-1 would be next step. Like many of us I was and still am hoping I can keep that in back pocket. I just hope and pray more things are in pipeline and can be accessible in very near future. Thanks again…appreciate all your insight, support and advice.
Josh
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- January 17, 2015 at 6:46 pm
Thanks a ton Celeste…really appreciate it. If things don't go my way Wednesday then I'm guessing PD-1 would be next step. Like many of us I was and still am hoping I can keep that in back pocket. I just hope and pray more things are in pipeline and can be accessible in very near future. Thanks again…appreciate all your insight, support and advice.
Josh
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- January 17, 2015 at 6:46 pm
Thanks a ton Celeste…really appreciate it. If things don't go my way Wednesday then I'm guessing PD-1 would be next step. Like many of us I was and still am hoping I can keep that in back pocket. I just hope and pray more things are in pipeline and can be accessible in very near future. Thanks again…appreciate all your insight, support and advice.
Josh
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- January 17, 2015 at 4:58 pm
Hey Josh,
Neither anti-PD1 product Nivolumab (now Opdivo) nor Pembrolizumab (now Keytruda) have proven to be significantly more effective in folks who have had prior ipi, no matter if they responded or not. Eventually, we may know otherwise, but currently the response rates following ipi are basically the same. Yes, the ipi/anti-PD1 combo trials that I know of do have prior ipi as an exclusion. However, you can always recheck that on the clinicaltrials.gov website. The positive thing that you have, that I did not, is the fact that both anti-PD1 products are currently FDA approved and therefore available to any patient who has failed ipi and BRAFi (if BRAF positive). You can take them without the need of participation in a clinical trial. So, yes…for me, Weber (who is very knowledgeable and whom I would recommend to anyone with no hesitation!) was critical for my access to nivo as he was running the trial in Tampa that I joined. However, you should be able to access either anti-PD1 product nearer to home if you do have spread. If you are NED after this surgery that does put you in a good, but difficult position. There are still no approved treatments for NED patients other than interferon. However, there are NED trials available, though finding them, sorting through them, and then gaining access is a challenge. Hang in there, Celeste
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- January 17, 2015 at 2:19 pm
Hi Celeste-
Dr Weber was instrumental in PD-1 right? I guess my question would be since I did have ipi and did respond…is there a better PD-1 for people who've had ipi responded but not a durable response? I know there was previous discussion but I can't locate it. I'm just fried.Also guessing I'm not eligible for ipi/pd-1 combo due to being treated with ipi already.
Josh
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- January 16, 2015 at 6:02 pm
Hi Josh. Sorry about the latest news. Just wanted to add that the U of C has a new melanoma specialist that worked under Dr Steve Hodi at Dana Farber. His name is Dr Jason Luke. Once Dr Kaufman left Rush, we knew we would eventually have to find someone in our area. We saw him in November and we really like him. Let me know if you need any further info.
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- January 16, 2015 at 6:08 pm
That's great because I'm in process of getting an appt at least for 2nd opinion in the event cancer spread again. I like Richards and Hallmeyer at Lutheran General but just like options. I too saw Kaufman at Rush…he and Richards worked well on my case. Though at time I was NED for awhile. Hope to be there again…I think chances get worse every time it comes back.
Josh
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- January 16, 2015 at 6:08 pm
That's great because I'm in process of getting an appt at least for 2nd opinion in the event cancer spread again. I like Richards and Hallmeyer at Lutheran General but just like options. I too saw Kaufman at Rush…he and Richards worked well on my case. Though at time I was NED for awhile. Hope to be there again…I think chances get worse every time it comes back.
Josh
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- January 16, 2015 at 6:08 pm
That's great because I'm in process of getting an appt at least for 2nd opinion in the event cancer spread again. I like Richards and Hallmeyer at Lutheran General but just like options. I too saw Kaufman at Rush…he and Richards worked well on my case. Though at time I was NED for awhile. Hope to be there again…I think chances get worse every time it comes back.
Josh
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- January 16, 2015 at 7:03 pm
Dr. Luke was one of the presenters at the conference I went to in Chicago in October. I was very impressed with his knowledge. You can see presentation here:
http://curemelanoma.org/about-melanoma/patient-eng/patient-forum-videos/
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- January 17, 2015 at 2:37 am
I'm sorry Matt too. I think anti-pd1 or TIL are great options. Wishing you the best!!
Maureen
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- January 17, 2015 at 2:37 am
I'm sorry Matt too. I think anti-pd1 or TIL are great options. Wishing you the best!!
Maureen
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- January 17, 2015 at 2:37 am
I'm sorry Matt too. I think anti-pd1 or TIL are great options. Wishing you the best!!
Maureen
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- January 16, 2015 at 7:03 pm
Dr. Luke was one of the presenters at the conference I went to in Chicago in October. I was very impressed with his knowledge. You can see presentation here:
http://curemelanoma.org/about-melanoma/patient-eng/patient-forum-videos/
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- January 16, 2015 at 7:03 pm
Dr. Luke was one of the presenters at the conference I went to in Chicago in October. I was very impressed with his knowledge. You can see presentation here:
http://curemelanoma.org/about-melanoma/patient-eng/patient-forum-videos/
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- January 16, 2015 at 6:02 pm
Hi Josh. Sorry about the latest news. Just wanted to add that the U of C has a new melanoma specialist that worked under Dr Steve Hodi at Dana Farber. His name is Dr Jason Luke. Once Dr Kaufman left Rush, we knew we would eventually have to find someone in our area. We saw him in November and we really like him. Let me know if you need any further info.
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- January 16, 2015 at 6:02 pm
Hi Josh. Sorry about the latest news. Just wanted to add that the U of C has a new melanoma specialist that worked under Dr Steve Hodi at Dana Farber. His name is Dr Jason Luke. Once Dr Kaufman left Rush, we knew we would eventually have to find someone in our area. We saw him in November and we really like him. Let me know if you need any further info.
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