› Forums › General Melanoma Community › Treating a very large tumor
- This topic has 24 replies, 6 voices, and was last updated 9 years, 2 months ago by
Bubbles.
- Post
-
- February 18, 2015 at 6:32 am
Hi all, just looking for some insight. I've had stage 4 melanoma for a few years now but over the last 6 months I've had an extremely large tumor in my groin that will not shrink. The tumor is protruding from my right groin/pubic area and it's about the size of a grapefruit. To say the least, I need to figure out how to rid this tumor. From September -December I had 4 rounds chemotherapy (taxol/carbo) that really helped and shrunk or killed many of my other tumors. I also had direct radiation for 10 days to the tumor. However this particular tumor is stubborn and possibly encapsulated itself. Seems that any of the treatments can't penetrate this area. Recently I switched from chemo to Anti-PD1 Keytruda and have had two rounds (3rd this Tuesday) but no response yet.
I've checked with a few surgeons, radiation onc, and a few oncologists so far, and nobody has an idea. Surgery is not an option because of location. Has anybody seen or heard of anyone having any tumors this large? Or are other alternatives to reduce tumors?
After feeling during some real rough stretches and being on multiple treatments, a brain surgery, clinical trial, chemo, radiation, and now Keytruda, I'm finally feeling a bit better, but this tumor is preventing me from getting back to close to normal. If anybody has any ideas please share.
Thanks,
Shane
- Replies
-
-
- February 18, 2015 at 4:03 pm
Good to hear from you again Shane.
Yes there has been some pretty exciting things done for large solid tumors if they can be reached from the surface. I'm not sure where I put the article but at the angelis clinic the doc there combined a massive dose of electricity with IL12 I think it was. But the location is of massive importance if they can safely do that much electricity. I called them when my spine tumor almost paralyzed me and they were really great over the phone but they couldn't do it that close to spinal cord. Certainly worth a call for yours I would think.
Also there is a phase 2 trial going on in San francisco and a couple other places for IL12. This has had an over 50% response rate in their phase1 trial for the treated tumors and a significant response in distant non treated tumors. Again this has to be a tumor they can reach from the surface.
hope that helps. That's all I know of but maybe someone else knows more.
Artie
-
- February 18, 2015 at 4:03 pm
Good to hear from you again Shane.
Yes there has been some pretty exciting things done for large solid tumors if they can be reached from the surface. I'm not sure where I put the article but at the angelis clinic the doc there combined a massive dose of electricity with IL12 I think it was. But the location is of massive importance if they can safely do that much electricity. I called them when my spine tumor almost paralyzed me and they were really great over the phone but they couldn't do it that close to spinal cord. Certainly worth a call for yours I would think.
Also there is a phase 2 trial going on in San francisco and a couple other places for IL12. This has had an over 50% response rate in their phase1 trial for the treated tumors and a significant response in distant non treated tumors. Again this has to be a tumor they can reach from the surface.
hope that helps. That's all I know of but maybe someone else knows more.
Artie
-
- February 19, 2015 at 10:50 pm
Here's something I saw a while back that is along the lines of what Artie is talking about. I think Dr. Adil Daud is at SCSF.
Brian
http://news.yahoo.com/video/doctors-using-therapy-shock-away-063513629.html
-
- February 19, 2015 at 10:50 pm
Here's something I saw a while back that is along the lines of what Artie is talking about. I think Dr. Adil Daud is at SCSF.
Brian
http://news.yahoo.com/video/doctors-using-therapy-shock-away-063513629.html
-
- February 19, 2015 at 10:50 pm
Here's something I saw a while back that is along the lines of what Artie is talking about. I think Dr. Adil Daud is at SCSF.
Brian
http://news.yahoo.com/video/doctors-using-therapy-shock-away-063513629.html
-
- February 18, 2015 at 4:03 pm
Good to hear from you again Shane.
Yes there has been some pretty exciting things done for large solid tumors if they can be reached from the surface. I'm not sure where I put the article but at the angelis clinic the doc there combined a massive dose of electricity with IL12 I think it was. But the location is of massive importance if they can safely do that much electricity. I called them when my spine tumor almost paralyzed me and they were really great over the phone but they couldn't do it that close to spinal cord. Certainly worth a call for yours I would think.
Also there is a phase 2 trial going on in San francisco and a couple other places for IL12. This has had an over 50% response rate in their phase1 trial for the treated tumors and a significant response in distant non treated tumors. Again this has to be a tumor they can reach from the surface.
hope that helps. That's all I know of but maybe someone else knows more.
Artie
-
- February 18, 2015 at 4:59 pm
Have you considered adding T-vec (Talimogene Laherparepvec)? There is an expanded access program:
https://clinicaltrials.gov/ct2/show/NCT02147951
T-vec has shown very promising results together with Ipi without added side effects, so the combination with Keytruda seems interesting. Here is some information about early results for the combination (half way down the page):
-
- February 18, 2015 at 4:59 pm
Have you considered adding T-vec (Talimogene Laherparepvec)? There is an expanded access program:
https://clinicaltrials.gov/ct2/show/NCT02147951
T-vec has shown very promising results together with Ipi without added side effects, so the combination with Keytruda seems interesting. Here is some information about early results for the combination (half way down the page):
-
- February 18, 2015 at 4:59 pm
Have you considered adding T-vec (Talimogene Laherparepvec)? There is an expanded access program:
https://clinicaltrials.gov/ct2/show/NCT02147951
T-vec has shown very promising results together with Ipi without added side effects, so the combination with Keytruda seems interesting. Here is some information about early results for the combination (half way down the page):
-
- February 18, 2015 at 5:34 pm
Glad you are feeling a bit better. Sorry about the persistence of this tumor. Did you every approach your docs about the possibility of intralesional therapy? I don't know if that is an option or not, but it sounds as though it might be. I think I've given you these before…but just in case….some posts re: a variety of intralesional approaches…
Wishing you my best. Celeste
-
- February 18, 2015 at 5:34 pm
Glad you are feeling a bit better. Sorry about the persistence of this tumor. Did you every approach your docs about the possibility of intralesional therapy? I don't know if that is an option or not, but it sounds as though it might be. I think I've given you these before…but just in case….some posts re: a variety of intralesional approaches…
Wishing you my best. Celeste
-
- February 18, 2015 at 5:34 pm
Glad you are feeling a bit better. Sorry about the persistence of this tumor. Did you every approach your docs about the possibility of intralesional therapy? I don't know if that is an option or not, but it sounds as though it might be. I think I've given you these before…but just in case….some posts re: a variety of intralesional approaches…
Wishing you my best. Celeste
-
- February 19, 2015 at 10:13 pm
I don't know why intratumoral injection isn't used more frequently in such cases. There may be reasons, but everything I have read makes the strategy look promising. The agents used are frequently designed to trigger an immune response rather than being directly cytotoxic. For example, these have been studied in cancer patients and/or in animal models…
– CpG-ODN (CpG oligodeoxynucleotides)
– imiquimod
– IL-2
– bee venom
Survival after intratumoral interleukin-2 treatment of 72 melanoma patients and response upon the first chemotherapy during follow-up
http://link.springer.com/article/10.1007%2Fs00262-010-0957-3
-
- February 19, 2015 at 10:13 pm
I don't know why intratumoral injection isn't used more frequently in such cases. There may be reasons, but everything I have read makes the strategy look promising. The agents used are frequently designed to trigger an immune response rather than being directly cytotoxic. For example, these have been studied in cancer patients and/or in animal models…
– CpG-ODN (CpG oligodeoxynucleotides)
– imiquimod
– IL-2
– bee venom
Survival after intratumoral interleukin-2 treatment of 72 melanoma patients and response upon the first chemotherapy during follow-up
http://link.springer.com/article/10.1007%2Fs00262-010-0957-3
-
- February 19, 2015 at 10:13 pm
I don't know why intratumoral injection isn't used more frequently in such cases. There may be reasons, but everything I have read makes the strategy look promising. The agents used are frequently designed to trigger an immune response rather than being directly cytotoxic. For example, these have been studied in cancer patients and/or in animal models…
– CpG-ODN (CpG oligodeoxynucleotides)
– imiquimod
– IL-2
– bee venom
Survival after intratumoral interleukin-2 treatment of 72 melanoma patients and response upon the first chemotherapy during follow-up
http://link.springer.com/article/10.1007%2Fs00262-010-0957-3
-
- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
-
- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
-
- February 20, 2015 at 3:58 pm
Hey Shane,
You tumor may well be necrotic tissue. An internet friend of mine had a large tumor (actually grew while she was on anti-PD1) that was visible and causing problems in her shoulder. Like yours it had some density changes apart from the growth on scans. Finally…it was surgically removed and though some path is still pending, it was clearly predominently, if not completely, necrotic tissue. That is my hope for you as well. Of course, your obvious problem of a mass in your groin remains either way!!! So sorry!!! Hoping that a solution reveals itself very soon!!!! Hang in there! Celeste
-
- February 20, 2015 at 3:58 pm
Hey Shane,
You tumor may well be necrotic tissue. An internet friend of mine had a large tumor (actually grew while she was on anti-PD1) that was visible and causing problems in her shoulder. Like yours it had some density changes apart from the growth on scans. Finally…it was surgically removed and though some path is still pending, it was clearly predominently, if not completely, necrotic tissue. That is my hope for you as well. Of course, your obvious problem of a mass in your groin remains either way!!! So sorry!!! Hoping that a solution reveals itself very soon!!!! Hang in there! Celeste
-
- February 20, 2015 at 3:58 pm
Hey Shane,
You tumor may well be necrotic tissue. An internet friend of mine had a large tumor (actually grew while she was on anti-PD1) that was visible and causing problems in her shoulder. Like yours it had some density changes apart from the growth on scans. Finally…it was surgically removed and though some path is still pending, it was clearly predominently, if not completely, necrotic tissue. That is my hope for you as well. Of course, your obvious problem of a mass in your groin remains either way!!! So sorry!!! Hoping that a solution reveals itself very soon!!!! Hang in there! Celeste
-
- February 20, 2015 at 9:07 am
Thanks for all the input. I've asked previously about intralesional treatment but it was dismissed. I will ask again next week at my appointment. I like the sound of that shock therapy too. I'm currently on Keytruda so I doubt that I can switch just yet.
I was also curious about filtering these tumors naturally, or in combination with current treatment. The recent scans have shown the density of this tumor has changed and may be necrotic. Problem is I still have the mass in my groin.
Thanks,
Shane
-
- You must be logged in to reply to this topic.