› Forums › General Melanoma Community › Chemo / Radiation
- This topic has 57 replies, 7 voices, and was last updated 9 years, 6 months ago by
arthurjedi007.
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- October 22, 2014 at 9:24 pm
Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain.
I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great.
Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor – about I'm just afraid of what happens next.
Thanks,
Shane
- Replies
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- October 22, 2014 at 11:37 pm
I'm assuming a surgeon can't cut it out?
everyone is different, but if it was me, with just what you have said to go by, if it is grapefruit size and definitely melanoma, I would be more worried about getting the tumor out than anything else
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- October 23, 2014 at 2:07 am
Yes I really woukd like that out, but the location is too dangerous to remove it. Many doctors have mirrored the same thing: too dangerous or inoperable. The tumor is in my groin and wrapped around nerves and blood vessels.
I'm just at a point where I need this shrinking.
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- October 23, 2014 at 2:07 am
Yes I really woukd like that out, but the location is too dangerous to remove it. Many doctors have mirrored the same thing: too dangerous or inoperable. The tumor is in my groin and wrapped around nerves and blood vessels.
I'm just at a point where I need this shrinking.
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- October 23, 2014 at 2:07 am
Yes I really woukd like that out, but the location is too dangerous to remove it. Many doctors have mirrored the same thing: too dangerous or inoperable. The tumor is in my groin and wrapped around nerves and blood vessels.
I'm just at a point where I need this shrinking.
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- October 23, 2014 at 3:30 pm
Hey Shane,
I have not undergone radiation other than SRS to a brain met…so not at all what you are thinking of. However, there are many who have used radiation to shrink various extra-cranial tumors in order to have the opportunity to more safely remove them surgically, to diminish pain and other problems the size of tumor was causing, as well as the hope that with diminished size or possibly the inflammatory response to radiation itself would allow systemic therapies to be more effective. Most recently I can think of Artie, Jonathan, and Alisa. They all had varying degrees of success. But perhaps they will respond or you can search for their posts. You are correct in having some concern about collateral damage, though in recent years the accuracy and mechanics of radiation is much improved. Some facilities can utilize SRS to the body, which is something I would talk to my docs about. Probably haven't helped you much. But I wish you well. Celeste
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- October 23, 2014 at 3:40 pm
A big PS!!! Have you talked to your docs about intralesional therapy???? Given that your tumor certainly sounds accessible….it might be helpful and at least get you to the point that you could proceed with other things or perhaps….even take care of it!!! Here is some data re: intralesional theapy for melanoma that I have posted:
Here is a post in which Ribas and Weber dicussed a lot of melanoma therapies. The paragraph below the link is most of what they had to say about intralesional therapy:
"Injectable therapies
Ribas: …a randomized trial of an injectable virus called T-VEC compared with granulocyte-macrophage colony stimulating factor (GM-CSF).Weber: …the responses were 16% vs 2%. Obviously you don't expect any responses with GM-CSF, so 2% would be essentially zero. A 16% response rate overall in a patient with injectable local-regional disease plus systemic disease is pretty modest….that is close to being able to show the satisfaction of the oncologic community that there are benefits to giving this injectable therapy….Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis…..now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going. [see abstract and history of intralesional therapy in February 2, 2014 post"
Info from 2014 ASCO re intralesional therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
PV-10 or Rose Bengal as an intralesional therapy….with two other posts regarding same linked within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
For what it's worth. C
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- October 23, 2014 at 3:40 pm
A big PS!!! Have you talked to your docs about intralesional therapy???? Given that your tumor certainly sounds accessible….it might be helpful and at least get you to the point that you could proceed with other things or perhaps….even take care of it!!! Here is some data re: intralesional theapy for melanoma that I have posted:
Here is a post in which Ribas and Weber dicussed a lot of melanoma therapies. The paragraph below the link is most of what they had to say about intralesional therapy:
"Injectable therapies
Ribas: …a randomized trial of an injectable virus called T-VEC compared with granulocyte-macrophage colony stimulating factor (GM-CSF).Weber: …the responses were 16% vs 2%. Obviously you don't expect any responses with GM-CSF, so 2% would be essentially zero. A 16% response rate overall in a patient with injectable local-regional disease plus systemic disease is pretty modest….that is close to being able to show the satisfaction of the oncologic community that there are benefits to giving this injectable therapy….Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis…..now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going. [see abstract and history of intralesional therapy in February 2, 2014 post"
Info from 2014 ASCO re intralesional therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
PV-10 or Rose Bengal as an intralesional therapy….with two other posts regarding same linked within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
For what it's worth. C
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- October 23, 2014 at 4:27 pm
My Dad's melanoma specialist said he was having good success with BCG injections. That treatment was used ages ago and I thought out of date, but he said actually working as an injectable now. My Dad had in-transit lesions and he said if any of them became uncomfortable or problematic, he would try injecting BCG first. Certainly worth checking those type of therapies out.
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- October 23, 2014 at 4:27 pm
My Dad's melanoma specialist said he was having good success with BCG injections. That treatment was used ages ago and I thought out of date, but he said actually working as an injectable now. My Dad had in-transit lesions and he said if any of them became uncomfortable or problematic, he would try injecting BCG first. Certainly worth checking those type of therapies out.
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- October 23, 2014 at 4:27 pm
My Dad's melanoma specialist said he was having good success with BCG injections. That treatment was used ages ago and I thought out of date, but he said actually working as an injectable now. My Dad had in-transit lesions and he said if any of them became uncomfortable or problematic, he would try injecting BCG first. Certainly worth checking those type of therapies out.
-
- October 23, 2014 at 3:40 pm
A big PS!!! Have you talked to your docs about intralesional therapy???? Given that your tumor certainly sounds accessible….it might be helpful and at least get you to the point that you could proceed with other things or perhaps….even take care of it!!! Here is some data re: intralesional theapy for melanoma that I have posted:
Here is a post in which Ribas and Weber dicussed a lot of melanoma therapies. The paragraph below the link is most of what they had to say about intralesional therapy:
"Injectable therapies
Ribas: …a randomized trial of an injectable virus called T-VEC compared with granulocyte-macrophage colony stimulating factor (GM-CSF).Weber: …the responses were 16% vs 2%. Obviously you don't expect any responses with GM-CSF, so 2% would be essentially zero. A 16% response rate overall in a patient with injectable local-regional disease plus systemic disease is pretty modest….that is close to being able to show the satisfaction of the oncologic community that there are benefits to giving this injectable therapy….Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis…..now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going. [see abstract and history of intralesional therapy in February 2, 2014 post"
Info from 2014 ASCO re intralesional therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
PV-10 or Rose Bengal as an intralesional therapy….with two other posts regarding same linked within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/more-intralesional-therapies-for.html
For what it's worth. C
-
- October 23, 2014 at 3:30 pm
Hey Shane,
I have not undergone radiation other than SRS to a brain met…so not at all what you are thinking of. However, there are many who have used radiation to shrink various extra-cranial tumors in order to have the opportunity to more safely remove them surgically, to diminish pain and other problems the size of tumor was causing, as well as the hope that with diminished size or possibly the inflammatory response to radiation itself would allow systemic therapies to be more effective. Most recently I can think of Artie, Jonathan, and Alisa. They all had varying degrees of success. But perhaps they will respond or you can search for their posts. You are correct in having some concern about collateral damage, though in recent years the accuracy and mechanics of radiation is much improved. Some facilities can utilize SRS to the body, which is something I would talk to my docs about. Probably haven't helped you much. But I wish you well. Celeste
-
- October 23, 2014 at 3:30 pm
Hey Shane,
I have not undergone radiation other than SRS to a brain met…so not at all what you are thinking of. However, there are many who have used radiation to shrink various extra-cranial tumors in order to have the opportunity to more safely remove them surgically, to diminish pain and other problems the size of tumor was causing, as well as the hope that with diminished size or possibly the inflammatory response to radiation itself would allow systemic therapies to be more effective. Most recently I can think of Artie, Jonathan, and Alisa. They all had varying degrees of success. But perhaps they will respond or you can search for their posts. You are correct in having some concern about collateral damage, though in recent years the accuracy and mechanics of radiation is much improved. Some facilities can utilize SRS to the body, which is something I would talk to my docs about. Probably haven't helped you much. But I wish you well. Celeste
-
- October 23, 2014 at 4:13 pm
Hi Shane,
I posted this in response to you over on MIF, but wanted to make sure you saw it… it might sound a little disjointed because you and others asked some other questions over there that didn't come up here, but I don't have a chance to rewrite it right now. Anyway, I included some stuff about NIH and delaying because of a tumor (my experience), some of the injectable options that are up and coming, as well as my experience with melanoma to non-brain lesions/tumors using stereotactic body radiotherapy (SBRT), essentially SRS but not to the brain.
A handful of thoughts… when I did TIL at NIH, I ended up having to delay between cell harvest and infusion because of a similar issue. I had a bone met in my proximal humerus that as we got closer to being ready to infuse had grown to the point where there was concern that it wouldn't take much for it to fracture in a fall or even perhaps rolling on it awkwardly in my sleep. The danger was that when they administer the non-myeloablative chemotherapy regimen prior to cell infusion to wipe out the immune system, a fracture would be so much more complicated given the risk for infection (they don't even let you shave with an electric razor for two weeks for fear of a small cut). So while the large nodal tumor doesn't necessarily pose a direct fracture risk, perhaps the compromised walk is of concern to them? Still, I would think they could work with it. During the IL-2 phase of treatment post cell infusion, they administer Lasix to take off the water retention (I gained and lost 25 pounds of fluid in 6 days), so was out of the bed to the bathroom frequently, but that could be handled with a bedside urinal or catheter. And come to think of it, during the first two days of chemotherapy (the cyclophosphamide), they give Lasix and insist on a certain volume of urine output every two hours for 48 hours straight, because the cyclophosphamide can damage the bladder. And in that part, I had to use a urinal to measure output.Have you asked NIH directly why they won't give the cells with the groin tumor present, or at its current size? And is that tumor unresectable? Could they remove it, allow you to heal, and then move on to the cell infusion phase? (Out of curiosity, who is your attending physician on rotation there now?)I don't know if MDA and NIH would transfer harvested and grown cells, again worth the question. Another approach might be for MDA to use the tumor in question right now for a separate harvest for their own use. They are offering some patients in a trial the opportunity to harvest a tumor now and "bank" it for potential future use, even if they're in the middle of another treatment currently.In addition to intralesional IL-2, there are some similar injectable and intralesional approaches. There is an "electroporation" technique that uses electrical pulses to open up cell membranes allowing the IL-2 to more readily penetrate tumor cells… search for "OncoSec ImmunoPulse". There are other injectable agents, too. Provectus PV-10 is one. I've read about it and am not sure what to think, because it seems like they've been reporting on the same Phase Ii trial results for several years without starting a new Phase III trial. They reported some results in Europe recently, but I'm not sure how new they are. Regardless, they say a Phase III trial will be opening soon. And there is Amgen's "T-Vec" or "talimogene laherparepvec", which is an injectable virus that is showing success with melanoma. What these all have in common is that they're injectable into specific tumors.Finally, as you describe it, I don't think this is an option for something in the groin, because it's too high up, but there is isolated limb perfusion (ILP), where they can deliver higher doses of chemotherapy to a specific limb by essentially putting it on a temporary bypass while the chemotherapy is infused. Again, the groin may be to high up and ILP may be for lesions slightly further down an arm or leg, but worth asking about to be sure.I've had radiation to brain (SRS CyberKnife) and non-brain with mixed success. Four different times to three of the four "long bones" of my leg. Two of the four responded and are essentially dead, one progressed soon after finishing radiation and required surgery to excise (and fill with bone cement) about three months later, and another was stable for almost three years before starting to progress and also needing a similar surgery (although 90% of the excised tumor turned out to be dead). I also had a comparatively (to your groin tumor) small lung met radiated in February that very quickly responded and doesn't show up on scans anymore. In my experience, radiation can play a role, but full disclosure, I haven't had a tumor as large as the one you describe.I hope that helps in some way. Will be keeping my eye out for updates from you and wishing you the best in the meantime.Joe -
- October 23, 2014 at 4:13 pm
Hi Shane,
I posted this in response to you over on MIF, but wanted to make sure you saw it… it might sound a little disjointed because you and others asked some other questions over there that didn't come up here, but I don't have a chance to rewrite it right now. Anyway, I included some stuff about NIH and delaying because of a tumor (my experience), some of the injectable options that are up and coming, as well as my experience with melanoma to non-brain lesions/tumors using stereotactic body radiotherapy (SBRT), essentially SRS but not to the brain.
A handful of thoughts… when I did TIL at NIH, I ended up having to delay between cell harvest and infusion because of a similar issue. I had a bone met in my proximal humerus that as we got closer to being ready to infuse had grown to the point where there was concern that it wouldn't take much for it to fracture in a fall or even perhaps rolling on it awkwardly in my sleep. The danger was that when they administer the non-myeloablative chemotherapy regimen prior to cell infusion to wipe out the immune system, a fracture would be so much more complicated given the risk for infection (they don't even let you shave with an electric razor for two weeks for fear of a small cut). So while the large nodal tumor doesn't necessarily pose a direct fracture risk, perhaps the compromised walk is of concern to them? Still, I would think they could work with it. During the IL-2 phase of treatment post cell infusion, they administer Lasix to take off the water retention (I gained and lost 25 pounds of fluid in 6 days), so was out of the bed to the bathroom frequently, but that could be handled with a bedside urinal or catheter. And come to think of it, during the first two days of chemotherapy (the cyclophosphamide), they give Lasix and insist on a certain volume of urine output every two hours for 48 hours straight, because the cyclophosphamide can damage the bladder. And in that part, I had to use a urinal to measure output.Have you asked NIH directly why they won't give the cells with the groin tumor present, or at its current size? And is that tumor unresectable? Could they remove it, allow you to heal, and then move on to the cell infusion phase? (Out of curiosity, who is your attending physician on rotation there now?)I don't know if MDA and NIH would transfer harvested and grown cells, again worth the question. Another approach might be for MDA to use the tumor in question right now for a separate harvest for their own use. They are offering some patients in a trial the opportunity to harvest a tumor now and "bank" it for potential future use, even if they're in the middle of another treatment currently.In addition to intralesional IL-2, there are some similar injectable and intralesional approaches. There is an "electroporation" technique that uses electrical pulses to open up cell membranes allowing the IL-2 to more readily penetrate tumor cells… search for "OncoSec ImmunoPulse". There are other injectable agents, too. Provectus PV-10 is one. I've read about it and am not sure what to think, because it seems like they've been reporting on the same Phase Ii trial results for several years without starting a new Phase III trial. They reported some results in Europe recently, but I'm not sure how new they are. Regardless, they say a Phase III trial will be opening soon. And there is Amgen's "T-Vec" or "talimogene laherparepvec", which is an injectable virus that is showing success with melanoma. What these all have in common is that they're injectable into specific tumors.Finally, as you describe it, I don't think this is an option for something in the groin, because it's too high up, but there is isolated limb perfusion (ILP), where they can deliver higher doses of chemotherapy to a specific limb by essentially putting it on a temporary bypass while the chemotherapy is infused. Again, the groin may be to high up and ILP may be for lesions slightly further down an arm or leg, but worth asking about to be sure.I've had radiation to brain (SRS CyberKnife) and non-brain with mixed success. Four different times to three of the four "long bones" of my leg. Two of the four responded and are essentially dead, one progressed soon after finishing radiation and required surgery to excise (and fill with bone cement) about three months later, and another was stable for almost three years before starting to progress and also needing a similar surgery (although 90% of the excised tumor turned out to be dead). I also had a comparatively (to your groin tumor) small lung met radiated in February that very quickly responded and doesn't show up on scans anymore. In my experience, radiation can play a role, but full disclosure, I haven't had a tumor as large as the one you describe.I hope that helps in some way. Will be keeping my eye out for updates from you and wishing you the best in the meantime.Joe -
- October 23, 2014 at 4:13 pm
Hi Shane,
I posted this in response to you over on MIF, but wanted to make sure you saw it… it might sound a little disjointed because you and others asked some other questions over there that didn't come up here, but I don't have a chance to rewrite it right now. Anyway, I included some stuff about NIH and delaying because of a tumor (my experience), some of the injectable options that are up and coming, as well as my experience with melanoma to non-brain lesions/tumors using stereotactic body radiotherapy (SBRT), essentially SRS but not to the brain.
A handful of thoughts… when I did TIL at NIH, I ended up having to delay between cell harvest and infusion because of a similar issue. I had a bone met in my proximal humerus that as we got closer to being ready to infuse had grown to the point where there was concern that it wouldn't take much for it to fracture in a fall or even perhaps rolling on it awkwardly in my sleep. The danger was that when they administer the non-myeloablative chemotherapy regimen prior to cell infusion to wipe out the immune system, a fracture would be so much more complicated given the risk for infection (they don't even let you shave with an electric razor for two weeks for fear of a small cut). So while the large nodal tumor doesn't necessarily pose a direct fracture risk, perhaps the compromised walk is of concern to them? Still, I would think they could work with it. During the IL-2 phase of treatment post cell infusion, they administer Lasix to take off the water retention (I gained and lost 25 pounds of fluid in 6 days), so was out of the bed to the bathroom frequently, but that could be handled with a bedside urinal or catheter. And come to think of it, during the first two days of chemotherapy (the cyclophosphamide), they give Lasix and insist on a certain volume of urine output every two hours for 48 hours straight, because the cyclophosphamide can damage the bladder. And in that part, I had to use a urinal to measure output.Have you asked NIH directly why they won't give the cells with the groin tumor present, or at its current size? And is that tumor unresectable? Could they remove it, allow you to heal, and then move on to the cell infusion phase? (Out of curiosity, who is your attending physician on rotation there now?)I don't know if MDA and NIH would transfer harvested and grown cells, again worth the question. Another approach might be for MDA to use the tumor in question right now for a separate harvest for their own use. They are offering some patients in a trial the opportunity to harvest a tumor now and "bank" it for potential future use, even if they're in the middle of another treatment currently.In addition to intralesional IL-2, there are some similar injectable and intralesional approaches. There is an "electroporation" technique that uses electrical pulses to open up cell membranes allowing the IL-2 to more readily penetrate tumor cells… search for "OncoSec ImmunoPulse". There are other injectable agents, too. Provectus PV-10 is one. I've read about it and am not sure what to think, because it seems like they've been reporting on the same Phase Ii trial results for several years without starting a new Phase III trial. They reported some results in Europe recently, but I'm not sure how new they are. Regardless, they say a Phase III trial will be opening soon. And there is Amgen's "T-Vec" or "talimogene laherparepvec", which is an injectable virus that is showing success with melanoma. What these all have in common is that they're injectable into specific tumors.Finally, as you describe it, I don't think this is an option for something in the groin, because it's too high up, but there is isolated limb perfusion (ILP), where they can deliver higher doses of chemotherapy to a specific limb by essentially putting it on a temporary bypass while the chemotherapy is infused. Again, the groin may be to high up and ILP may be for lesions slightly further down an arm or leg, but worth asking about to be sure.I've had radiation to brain (SRS CyberKnife) and non-brain with mixed success. Four different times to three of the four "long bones" of my leg. Two of the four responded and are essentially dead, one progressed soon after finishing radiation and required surgery to excise (and fill with bone cement) about three months later, and another was stable for almost three years before starting to progress and also needing a similar surgery (although 90% of the excised tumor turned out to be dead). I also had a comparatively (to your groin tumor) small lung met radiated in February that very quickly responded and doesn't show up on scans anymore. In my experience, radiation can play a role, but full disclosure, I haven't had a tumor as large as the one you describe.I hope that helps in some way. Will be keeping my eye out for updates from you and wishing you the best in the meantime.Joe -
- October 23, 2014 at 4:16 pm
I haven't had chemo but I've had radiation. If you have a good radiation doc they can radiate pretty much what they want. I've had 30 gray to my t8, t9, t10, t11 in 10 fractions. That was actually by a different doc and was wrong for melanoma. Fractions are basically the number of treatments so that comes out to only 3 gray per treatment. With melanoma you really need a minimum of 6 gray per treatment. Athough it was wrong and actually shrank nothing it did keep it dormant for a few months. Thus my next doc kept me from being paralyzed so far at 30 gray to my t10 in 5 fractions. That was like MWF then MW. So a day off between plus weekends. That did physically shrink it by about half. I also recently had 30 gray in 5 fractions to a spot in my skull, t12 and l2. Each of those received that amount. My hair where they radiated came out about a week after the last zap. But like my parents said it's like a precise line of where the hair came out and where it's still there. So they certainly zapped exactly what they wanted.
What happens with radiation though is each zap keeps traveling. So a good doc tries to come up with several different angles to get at the tumor. Like this latest treatment for me was about 6 zaps per area. They do that so they can get at the tumor while minimizing the healthy tissue.
There are also more expensive and newer machines like the proton that can radiate to a certain length then the radiation rapidly disipates so it doesn't continue. Most insurance though won't cover it because it is rather expensive.
Here's a link to that proton beam I mentioned with links to other types of radiation. This link is for Siteman in Saint Louis. I go there for my medicine but I don't go there for radiation because I didn't like the doc although they have other docs I didn't bother. I go to Missouri Baptist in Saint Louis for radiation. But this should give you an idea of what is available.
http://www.siteman.wustl.edu/ContentPage.aspx?id=7775
I also know what it is like to have a huge tumor that they can't operate on. Mine in my left shoulder is about 4 inches by 4 inches. It started in the left scapula bone and grew out to the soft tissue from there. Maybe not quite grapefruit size but I kindof got the hunchback look going. It of course hurts all the time but mostly around the edges. The docs told me in my first pd1 scan there was evidence the center was dead tissue like the med was destroying it from the inside out. So yeah I finally got lucky with a medicine for a change. Before pd1 no medicine ever got past the first scan. So far we are holding off radiating it.
Since you've done the ipi, pd1 and brafs and now doing chemo and thinking of radiation I thought I should mention Dr. Rosenberg's TIL (Tumor Infiltrating Lymphocytes) treatment. I dunno if you have heard of it but I thought I should mention it. There are some good posts on here about it.
Good luck to you.
Artie
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- October 23, 2014 at 4:16 pm
I haven't had chemo but I've had radiation. If you have a good radiation doc they can radiate pretty much what they want. I've had 30 gray to my t8, t9, t10, t11 in 10 fractions. That was actually by a different doc and was wrong for melanoma. Fractions are basically the number of treatments so that comes out to only 3 gray per treatment. With melanoma you really need a minimum of 6 gray per treatment. Athough it was wrong and actually shrank nothing it did keep it dormant for a few months. Thus my next doc kept me from being paralyzed so far at 30 gray to my t10 in 5 fractions. That was like MWF then MW. So a day off between plus weekends. That did physically shrink it by about half. I also recently had 30 gray in 5 fractions to a spot in my skull, t12 and l2. Each of those received that amount. My hair where they radiated came out about a week after the last zap. But like my parents said it's like a precise line of where the hair came out and where it's still there. So they certainly zapped exactly what they wanted.
What happens with radiation though is each zap keeps traveling. So a good doc tries to come up with several different angles to get at the tumor. Like this latest treatment for me was about 6 zaps per area. They do that so they can get at the tumor while minimizing the healthy tissue.
There are also more expensive and newer machines like the proton that can radiate to a certain length then the radiation rapidly disipates so it doesn't continue. Most insurance though won't cover it because it is rather expensive.
Here's a link to that proton beam I mentioned with links to other types of radiation. This link is for Siteman in Saint Louis. I go there for my medicine but I don't go there for radiation because I didn't like the doc although they have other docs I didn't bother. I go to Missouri Baptist in Saint Louis for radiation. But this should give you an idea of what is available.
http://www.siteman.wustl.edu/ContentPage.aspx?id=7775
I also know what it is like to have a huge tumor that they can't operate on. Mine in my left shoulder is about 4 inches by 4 inches. It started in the left scapula bone and grew out to the soft tissue from there. Maybe not quite grapefruit size but I kindof got the hunchback look going. It of course hurts all the time but mostly around the edges. The docs told me in my first pd1 scan there was evidence the center was dead tissue like the med was destroying it from the inside out. So yeah I finally got lucky with a medicine for a change. Before pd1 no medicine ever got past the first scan. So far we are holding off radiating it.
Since you've done the ipi, pd1 and brafs and now doing chemo and thinking of radiation I thought I should mention Dr. Rosenberg's TIL (Tumor Infiltrating Lymphocytes) treatment. I dunno if you have heard of it but I thought I should mention it. There are some good posts on here about it.
Good luck to you.
Artie
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- October 23, 2014 at 8:55 pm
The intralesional therapies are for stage III mostly, TVEC is anyway and rose bengal is for those mets that appear on the skin or just under. Some docs have suggested I try perfusional therapy but I haven't heard of great results. I think returning to braf/mek might help, you've been off it a while, it could work again!
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- October 23, 2014 at 9:05 pm
Perhaps the intralesional/injectable therapies are being geared more towards Stage III, but in reading Shane's other posts elsewhere here recently, he is in a special circumstance insofar as he has a specific tumor that is preventing him from beginning a trial. Since it sounds like excision isn't possible, if he is able to at least reduce the size of that tumor, it could get him back on track for the trial. So if any of these techniques might possible induce a response in that one tumor, then it is at least worth inquiring.
Joe
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- October 23, 2014 at 9:05 pm
Perhaps the intralesional/injectable therapies are being geared more towards Stage III, but in reading Shane's other posts elsewhere here recently, he is in a special circumstance insofar as he has a specific tumor that is preventing him from beginning a trial. Since it sounds like excision isn't possible, if he is able to at least reduce the size of that tumor, it could get him back on track for the trial. So if any of these techniques might possible induce a response in that one tumor, then it is at least worth inquiring.
Joe
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- October 23, 2014 at 9:37 pm
Exactly right, Joe. Additionally, anon, if you read the reports out of ASCO 2014 as well as the comments by Ribas and Weber (links above) intralesional therapy is being used in a variety of patients and specifically in Stage IV patients with metastatic disease…to quote Weber:
"Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis….now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going."
These drugs may serve as an important option in diminishing tumors, both the one injected as well as others at distant sites!!! They are also an important way to diminish problems growth of a specific tumor is causing and allow the patient greater comfort and perhaps better results from systemic therapy.
This is the results of Rose Bengal (PV-10) used as an intralesional therapy from ASCO:
"RESULTS: In the subgroup of 28 patients who received PV-10 into all existing melanoma lesions (therefore had NO un-injected lesions) the overall response rate was 71% with 50% experiencing a complete response. In these patients with all disease injected plus 26 other patients with uninjected disease limited to by-stander lesions – complete response was achieved in 232 of 363 injected lesions. 121 lesions required a single injection for complete response, 84 required 2 injections, 22 required 3, and 5 required 4 injections. Additionally, 10 of 28 UN-INJECTED bystander lesions achieved complete response."
For the whole story and another report on PV-10 out of Moffitt, here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html
Yours, Celeste
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- October 23, 2014 at 9:37 pm
Exactly right, Joe. Additionally, anon, if you read the reports out of ASCO 2014 as well as the comments by Ribas and Weber (links above) intralesional therapy is being used in a variety of patients and specifically in Stage IV patients with metastatic disease…to quote Weber:
"Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis….now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going."
These drugs may serve as an important option in diminishing tumors, both the one injected as well as others at distant sites!!! They are also an important way to diminish problems growth of a specific tumor is causing and allow the patient greater comfort and perhaps better results from systemic therapy.
This is the results of Rose Bengal (PV-10) used as an intralesional therapy from ASCO:
"RESULTS: In the subgroup of 28 patients who received PV-10 into all existing melanoma lesions (therefore had NO un-injected lesions) the overall response rate was 71% with 50% experiencing a complete response. In these patients with all disease injected plus 26 other patients with uninjected disease limited to by-stander lesions – complete response was achieved in 232 of 363 injected lesions. 121 lesions required a single injection for complete response, 84 required 2 injections, 22 required 3, and 5 required 4 injections. Additionally, 10 of 28 UN-INJECTED bystander lesions achieved complete response."
For the whole story and another report on PV-10 out of Moffitt, here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html
Yours, Celeste
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- October 23, 2014 at 9:37 pm
Exactly right, Joe. Additionally, anon, if you read the reports out of ASCO 2014 as well as the comments by Ribas and Weber (links above) intralesional therapy is being used in a variety of patients and specifically in Stage IV patients with metastatic disease…to quote Weber:
"Injectable therapies are making a comeback.….eons ago we were injecting BCG, interferon, and IL-2 into local-regional melanoma metastasis….now there are some interesting drugs, and T-VEC is one of them. I see this as a niche drug that would be best used to prime the immune system and follow up with a drug such as pembrolizumab, nivolumab, ipi, or a combination of those….that's where I see intralesional therapy going."
These drugs may serve as an important option in diminishing tumors, both the one injected as well as others at distant sites!!! They are also an important way to diminish problems growth of a specific tumor is causing and allow the patient greater comfort and perhaps better results from systemic therapy.
This is the results of Rose Bengal (PV-10) used as an intralesional therapy from ASCO:
"RESULTS: In the subgroup of 28 patients who received PV-10 into all existing melanoma lesions (therefore had NO un-injected lesions) the overall response rate was 71% with 50% experiencing a complete response. In these patients with all disease injected plus 26 other patients with uninjected disease limited to by-stander lesions – complete response was achieved in 232 of 363 injected lesions. 121 lesions required a single injection for complete response, 84 required 2 injections, 22 required 3, and 5 required 4 injections. Additionally, 10 of 28 UN-INJECTED bystander lesions achieved complete response."
For the whole story and another report on PV-10 out of Moffitt, here's the link: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html
Yours, Celeste
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- October 24, 2014 at 1:35 pm
I think the issue is a tumor deep in the groin, not a skin lesion (they call em sub cu) so this stuff wouldn't be an answer. Here's something out there about it: Symptom endpoints matter in oncology.
That’s one of the background messages in FDA’s May 16 rejection of Provectus Pharmaceuticals’ request for Breakthrough status for PV-10 (rose Bengal disodium in 0.9% saline) for use against locally advanced cutaneous melanoma.
FDA Division of Oncology Products 2 Director Patricia Keegan explained FDA’s denial of Breakthrough status by citing a “paucity of data on endpoints indicative of clinical benefit.”
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- October 24, 2014 at 1:35 pm
I think the issue is a tumor deep in the groin, not a skin lesion (they call em sub cu) so this stuff wouldn't be an answer. Here's something out there about it: Symptom endpoints matter in oncology.
That’s one of the background messages in FDA’s May 16 rejection of Provectus Pharmaceuticals’ request for Breakthrough status for PV-10 (rose Bengal disodium in 0.9% saline) for use against locally advanced cutaneous melanoma.
FDA Division of Oncology Products 2 Director Patricia Keegan explained FDA’s denial of Breakthrough status by citing a “paucity of data on endpoints indicative of clinical benefit.”
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- October 24, 2014 at 6:36 pm
Here's the only blurb I can find about Cavatek as intralesional therapy (It is being used as an intravenous therapy for several cancers): "Viralytics is continuing its phase II melanoma study using intratumourally injected CAVATAK under Intestigational New Drug application allowed by US Food and Drug Administration. In this study 13 subjects have so far been dosed…with 3 so far demonstrating immune-related progression-free survival at 6 months." Here's the link to this report from a biotech business site:
http://www.biospectrumasia.com/biospectrum/news/122985/viralytics-cavatek-study-held-uk
Here's data reported at ASCO from some of the big dogs in melanoma research on IL2, T-VEK, PV-10 all being used as intralesional therapy:
Data for TVEC: "Phase III OPTiM study of T-VEC in stage IIIB/IV melanoma included 295 patients treated with T-VEC and 141 treated with recombinant GM-CSF (Leukine) as the control arm. OPTiM met its primary endpoint of durable response, which was observed in 16.3% of the T-VEC arm and 2.1% of the control arm, creating an unadjusted odds ratio of 8.9 (P < .0001).1 The overall response rate was 26.4% and 5.7%, respectively." AND "The estimated probability of being in response at 12 months was 65% for patients who responded to T-VEC. Of 48 T-VEC–treated patients who achieved a durable response, 83% had responses ongoing at a median follow-up of 18.4 months."
Data for PV-10: [In] "an international phase II study of 80 patients. In the current analysis of 54 evaluable patients with cutaneous lesions, 28 underwent intralesional PV-10 injections in target and bystander lesions, while 26 had no bystander treatment. The overall response rate was 71% for the all-lesion group, with 50% complete responses; of those with injections in only the target lesions, 54% responded, and 23% had complete responses." AND "In a comparison of lesions before and after treatment, intralesional PV-10 led to pathologic complete responses in both PV-10-injected and uninjected study lesions in four of eight evaluable patients, and all eight exhibited at least partial regression of the injected lesions. These outcomes were observed even in patients with metastatic disease refractory to previous ipilimumab, anti–PD-1 antibodies and/or vemurafenib (Zelboraf)."
Data for IL-2: "29 patients received at least one treatment cycle, which consisted of injections on days 1, 5, and 8 for a maximum of four cycles at 12-week intervals. Responses, which were assessed by a modification of RECIST criteria, were observed in 32.2%, of which 10.7% were complete responses. Among 22 evaluable patients, 13 (59.1%) had regression of untreated distant lesions."
Perhaps that will help. Not touting any of these as the best new treatment for melanoma. Don't have a horse in the race. Just putting out facts from studies in case it might be of help to those who wish to pursue it. C
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- October 24, 2014 at 6:36 pm
Here's the only blurb I can find about Cavatek as intralesional therapy (It is being used as an intravenous therapy for several cancers): "Viralytics is continuing its phase II melanoma study using intratumourally injected CAVATAK under Intestigational New Drug application allowed by US Food and Drug Administration. In this study 13 subjects have so far been dosed…with 3 so far demonstrating immune-related progression-free survival at 6 months." Here's the link to this report from a biotech business site:
http://www.biospectrumasia.com/biospectrum/news/122985/viralytics-cavatek-study-held-uk
Here's data reported at ASCO from some of the big dogs in melanoma research on IL2, T-VEK, PV-10 all being used as intralesional therapy:
Data for TVEC: "Phase III OPTiM study of T-VEC in stage IIIB/IV melanoma included 295 patients treated with T-VEC and 141 treated with recombinant GM-CSF (Leukine) as the control arm. OPTiM met its primary endpoint of durable response, which was observed in 16.3% of the T-VEC arm and 2.1% of the control arm, creating an unadjusted odds ratio of 8.9 (P < .0001).1 The overall response rate was 26.4% and 5.7%, respectively." AND "The estimated probability of being in response at 12 months was 65% for patients who responded to T-VEC. Of 48 T-VEC–treated patients who achieved a durable response, 83% had responses ongoing at a median follow-up of 18.4 months."
Data for PV-10: [In] "an international phase II study of 80 patients. In the current analysis of 54 evaluable patients with cutaneous lesions, 28 underwent intralesional PV-10 injections in target and bystander lesions, while 26 had no bystander treatment. The overall response rate was 71% for the all-lesion group, with 50% complete responses; of those with injections in only the target lesions, 54% responded, and 23% had complete responses." AND "In a comparison of lesions before and after treatment, intralesional PV-10 led to pathologic complete responses in both PV-10-injected and uninjected study lesions in four of eight evaluable patients, and all eight exhibited at least partial regression of the injected lesions. These outcomes were observed even in patients with metastatic disease refractory to previous ipilimumab, anti–PD-1 antibodies and/or vemurafenib (Zelboraf)."
Data for IL-2: "29 patients received at least one treatment cycle, which consisted of injections on days 1, 5, and 8 for a maximum of four cycles at 12-week intervals. Responses, which were assessed by a modification of RECIST criteria, were observed in 32.2%, of which 10.7% were complete responses. Among 22 evaluable patients, 13 (59.1%) had regression of untreated distant lesions."
Perhaps that will help. Not touting any of these as the best new treatment for melanoma. Don't have a horse in the race. Just putting out facts from studies in case it might be of help to those who wish to pursue it. C
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- October 24, 2014 at 6:36 pm
Here's the only blurb I can find about Cavatek as intralesional therapy (It is being used as an intravenous therapy for several cancers): "Viralytics is continuing its phase II melanoma study using intratumourally injected CAVATAK under Intestigational New Drug application allowed by US Food and Drug Administration. In this study 13 subjects have so far been dosed…with 3 so far demonstrating immune-related progression-free survival at 6 months." Here's the link to this report from a biotech business site:
http://www.biospectrumasia.com/biospectrum/news/122985/viralytics-cavatek-study-held-uk
Here's data reported at ASCO from some of the big dogs in melanoma research on IL2, T-VEK, PV-10 all being used as intralesional therapy:
Data for TVEC: "Phase III OPTiM study of T-VEC in stage IIIB/IV melanoma included 295 patients treated with T-VEC and 141 treated with recombinant GM-CSF (Leukine) as the control arm. OPTiM met its primary endpoint of durable response, which was observed in 16.3% of the T-VEC arm and 2.1% of the control arm, creating an unadjusted odds ratio of 8.9 (P < .0001).1 The overall response rate was 26.4% and 5.7%, respectively." AND "The estimated probability of being in response at 12 months was 65% for patients who responded to T-VEC. Of 48 T-VEC–treated patients who achieved a durable response, 83% had responses ongoing at a median follow-up of 18.4 months."
Data for PV-10: [In] "an international phase II study of 80 patients. In the current analysis of 54 evaluable patients with cutaneous lesions, 28 underwent intralesional PV-10 injections in target and bystander lesions, while 26 had no bystander treatment. The overall response rate was 71% for the all-lesion group, with 50% complete responses; of those with injections in only the target lesions, 54% responded, and 23% had complete responses." AND "In a comparison of lesions before and after treatment, intralesional PV-10 led to pathologic complete responses in both PV-10-injected and uninjected study lesions in four of eight evaluable patients, and all eight exhibited at least partial regression of the injected lesions. These outcomes were observed even in patients with metastatic disease refractory to previous ipilimumab, anti–PD-1 antibodies and/or vemurafenib (Zelboraf)."
Data for IL-2: "29 patients received at least one treatment cycle, which consisted of injections on days 1, 5, and 8 for a maximum of four cycles at 12-week intervals. Responses, which were assessed by a modification of RECIST criteria, were observed in 32.2%, of which 10.7% were complete responses. Among 22 evaluable patients, 13 (59.1%) had regression of untreated distant lesions."
Perhaps that will help. Not touting any of these as the best new treatment for melanoma. Don't have a horse in the race. Just putting out facts from studies in case it might be of help to those who wish to pursue it. C
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- October 24, 2014 at 1:35 pm
I think the issue is a tumor deep in the groin, not a skin lesion (they call em sub cu) so this stuff wouldn't be an answer. Here's something out there about it: Symptom endpoints matter in oncology.
That’s one of the background messages in FDA’s May 16 rejection of Provectus Pharmaceuticals’ request for Breakthrough status for PV-10 (rose Bengal disodium in 0.9% saline) for use against locally advanced cutaneous melanoma.
FDA Division of Oncology Products 2 Director Patricia Keegan explained FDA’s denial of Breakthrough status by citing a “paucity of data on endpoints indicative of clinical benefit.”
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- October 23, 2014 at 9:05 pm
Perhaps the intralesional/injectable therapies are being geared more towards Stage III, but in reading Shane's other posts elsewhere here recently, he is in a special circumstance insofar as he has a specific tumor that is preventing him from beginning a trial. Since it sounds like excision isn't possible, if he is able to at least reduce the size of that tumor, it could get him back on track for the trial. So if any of these techniques might possible induce a response in that one tumor, then it is at least worth inquiring.
Joe
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- October 23, 2014 at 8:55 pm
The intralesional therapies are for stage III mostly, TVEC is anyway and rose bengal is for those mets that appear on the skin or just under. Some docs have suggested I try perfusional therapy but I haven't heard of great results. I think returning to braf/mek might help, you've been off it a while, it could work again!
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- October 23, 2014 at 8:55 pm
The intralesional therapies are for stage III mostly, TVEC is anyway and rose bengal is for those mets that appear on the skin or just under. Some docs have suggested I try perfusional therapy but I haven't heard of great results. I think returning to braf/mek might help, you've been off it a while, it could work again!
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- October 23, 2014 at 4:16 pm
I haven't had chemo but I've had radiation. If you have a good radiation doc they can radiate pretty much what they want. I've had 30 gray to my t8, t9, t10, t11 in 10 fractions. That was actually by a different doc and was wrong for melanoma. Fractions are basically the number of treatments so that comes out to only 3 gray per treatment. With melanoma you really need a minimum of 6 gray per treatment. Athough it was wrong and actually shrank nothing it did keep it dormant for a few months. Thus my next doc kept me from being paralyzed so far at 30 gray to my t10 in 5 fractions. That was like MWF then MW. So a day off between plus weekends. That did physically shrink it by about half. I also recently had 30 gray in 5 fractions to a spot in my skull, t12 and l2. Each of those received that amount. My hair where they radiated came out about a week after the last zap. But like my parents said it's like a precise line of where the hair came out and where it's still there. So they certainly zapped exactly what they wanted.
What happens with radiation though is each zap keeps traveling. So a good doc tries to come up with several different angles to get at the tumor. Like this latest treatment for me was about 6 zaps per area. They do that so they can get at the tumor while minimizing the healthy tissue.
There are also more expensive and newer machines like the proton that can radiate to a certain length then the radiation rapidly disipates so it doesn't continue. Most insurance though won't cover it because it is rather expensive.
Here's a link to that proton beam I mentioned with links to other types of radiation. This link is for Siteman in Saint Louis. I go there for my medicine but I don't go there for radiation because I didn't like the doc although they have other docs I didn't bother. I go to Missouri Baptist in Saint Louis for radiation. But this should give you an idea of what is available.
http://www.siteman.wustl.edu/ContentPage.aspx?id=7775
I also know what it is like to have a huge tumor that they can't operate on. Mine in my left shoulder is about 4 inches by 4 inches. It started in the left scapula bone and grew out to the soft tissue from there. Maybe not quite grapefruit size but I kindof got the hunchback look going. It of course hurts all the time but mostly around the edges. The docs told me in my first pd1 scan there was evidence the center was dead tissue like the med was destroying it from the inside out. So yeah I finally got lucky with a medicine for a change. Before pd1 no medicine ever got past the first scan. So far we are holding off radiating it.
Since you've done the ipi, pd1 and brafs and now doing chemo and thinking of radiation I thought I should mention Dr. Rosenberg's TIL (Tumor Infiltrating Lymphocytes) treatment. I dunno if you have heard of it but I thought I should mention it. There are some good posts on here about it.
Good luck to you.
Artie
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- October 25, 2014 at 6:46 am
Hi all thanks for the great responses. They all certainly have directed me toward more information. Joe I appreciate your detailed and informative posts. I remember your experiences at the NIH before, and you know where I'm at now, and trying to get back there. I actually emailed my doctor (Dr. Park is on rotation now) the other day and see if I could go back now because I'm feeling better and my cells are frozen, but I have not heard anything back. I thought I might get response today since they discuss about their patients on Friday.
So, I decided to just stay on course with the radiation to the groin and then follow a few rounds of chemo. But I'm hopefully to keep on this information and try to set up an appt in the next few weeks with a doctor, or cancer center, that is actually doing something like this. I think I might try to reach out to Dr. Daud at UCSF, and Dr.Weber at Moffit. Both those centers seem like they are doing good things. I'm currently at U of Chicago and I'm pleased there but I want to listen to options that aren't being offered here. I did have contact at MDA but my onc there, but Dr. Papa retired abruptly.
But, regarding the injections treatments, to me, I need these injections quickly, similar like how radiation is – where you do the treatment, and then back to a more complete systemic treatment within a few weeks: such as the TIL therapy, Keytruda (if I can even get because I did participate a nivolumumab trial). I definitely don't want to risk getting in a trial with intralesional treatment. Something that works directed to a certain tumor must be a quick.
Thanks again for all the responses and help posting some of the statistics. I just wish there is some more active treatments going on. And next to hear about these from the doctor.
-Shane
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- October 25, 2014 at 2:26 pm
Hey Shane,
Sounds like you've got a pretty good plan in place as well as some other options to check on. I hope you hear back from the folks regarding your TIL very soon. I know that Dr. Weber is very good about returning emails quickly if you decide to ask questions of him. Fingers crossed for good benefits from the radiation/chemo with the hope that it will provide pain relief and the ability to move forward. Hang in there. Yours, Celeste
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- October 25, 2014 at 2:26 pm
Hey Shane,
Sounds like you've got a pretty good plan in place as well as some other options to check on. I hope you hear back from the folks regarding your TIL very soon. I know that Dr. Weber is very good about returning emails quickly if you decide to ask questions of him. Fingers crossed for good benefits from the radiation/chemo with the hope that it will provide pain relief and the ability to move forward. Hang in there. Yours, Celeste
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- October 25, 2014 at 2:26 pm
Hey Shane,
Sounds like you've got a pretty good plan in place as well as some other options to check on. I hope you hear back from the folks regarding your TIL very soon. I know that Dr. Weber is very good about returning emails quickly if you decide to ask questions of him. Fingers crossed for good benefits from the radiation/chemo with the hope that it will provide pain relief and the ability to move forward. Hang in there. Yours, Celeste
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- October 27, 2014 at 5:28 pm
Hi Shane,
Hoping you've heard back from NIH — I'm not familiar with Dr. Park and I thought I knew all the attendings that cover the immunotherapy and TIL patients under Dr. Rosenberg. They rotate every 1-2 months among the staff clinicians and investigators. I haven't seen all of them, but over the year I was there, had 4 or 5 of them and knew of the others. Is Dr. Park the attending or your fellow? (The fellows are on year-long rotations as part of a longer fellowship).
Anyway, I'm still wondering why specifically the groin tumor is causing them concern about continuing the TIL, especially now that they have a viable cell infusion grown, frozen, and ready to go. Again, I hope you can get a clear answer to that.
The injectionables/intralesionals have seemed like a logical approach for shrinking a tumor, but it sounds like even though it's something that should in theory work, that there aren't any trials that are offering them for this specific use, which is frustrating. Perhaps once you hear from NIH what their goal is with respect to this tumor, you'll have a better idea of whether the chemotherapy and radiation can get you there, e.g. do they need a 50% reduction before beginning (or whatever)?
I have heard that prior nivolumab isn't an exclusion for Keytruda and that there are cases of response to one of the anti-PD-1's after not responding to the other. That's anecdotal, you might be able to find better data from others here. Also, have you checked out the anti-PD-L1 trials, like Roche's MPDL3280A or AstraZeneca's MEDI4736?
Will be keeping an eye out for your updates.
Best,
Joe -
- October 29, 2014 at 4:28 am
So today I finally heard from doctor at NIH. I explained what my reasons why I thought I'm ready to go back for TIL therapy: feeling much stronger, moving around better and more ambulatory, drastically reduced my pain medication (in my opinion barely using any), my tumor grew by 1cm and my pelvic tumor shrunk by 4cm while on two rounds of chemo.
So in my opinion Dr. Park did not really give me a great reason why I could go back and get the TIL therapy. She said they discussed my case and said they wanted me to go through with the radiation and then few more rounds of chemo. But also said I was basically needed to almost off pain medication. Seems odd because most stage 4 patients woukd have some pain. She also said I need to be able to more ambulatory – but I still don't understand how they mean by. I couldn't get a good answer.
Bottom line it was frustrating and to me I feel like I'll never get back there. Seems like they are making up the rules along we go.
Either way I'll going to start radiation tomorrow and I'm going to try and look for more clinical trials. Problem there I can't find any trials because I have done almost all the treatments – except IL2 or biochemo.
Thanks for listening and for the help,
Shane
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- October 29, 2014 at 8:06 am
Shane,
That has to be frustrating and you deserve answers, or at least a better explanation. I mean, if they want to say that you need to be more ambulatory, then that is at least part of an explanation, but the other part is why?I didn't think this would come into play, but perhaps you need to escalate this. I mentioned before about "attending physicians" and "fellows". My understanding of how they operate is that within the Surgery Branch of the NCI of the NIH, Dr. Rosenberg is in charge. Under him are regular NIH staff listed as "investigators", "clinicians", and "scientists", and some of these groups have their own staffs. Then there are "fellows", relatively new doctors who are typically on three-year fellowships, rotating a year at a time through surgery, lab research, and patient care. When you are a patient there, at any one time you should have two doctors assigned to you: an attending physician and a fellow. Once assigned, your fellow is your primary point of contact for the year (or part of a year) until they move on to their next rotation. However, they work under the guidance of the permanent staff, especially the current attending physician. The role of attending rotates more frequently among the investigators and clinicians and while in that role, the attending is in charge of patient care, they're the ones that take charge of inpatient rounds, they're the ones who see new and returning patients in the clinic, along with the fellow. But they rotate every month or two. So the most frequent contact is with the fellow, but the much more experienced physician, to whom you can also speak, is the attending.I explain all this because it sounds like Dr. Park may be a fellow and not an attending. I'm not familiar with her name — at 3+ years since the last time I visited, she could be new, but I checked their website, and I don't see her listed at all among the clinicians or investigators on staff among the familiar names I do know. I was very happy with my fellow when I was there, but there were certainly times that I felt like I needed a better or more experienced explanation and escalated to the attending. They are part of your care team, too, and were always willing to talk with me, on the phone or in person. If it was on the phone, I'd gently ask the fellow who the current attending was and ask if we could arrange a time to speak, and if I wasn't getting clear answers from the fellow, I found I usually got them from the attending.It can be a hard conversation to have, essentially asking to "speak to the manager", but once I did, I never felt that way and you're probably entitled to a better explanation than you're getting. You might also ask what the plan is if the chemo/radiation don't shrink the tumor? Is this just something they want to try first, but if it doesn't help, they'll still bring you in? Just some suggestions to help you get some clarity, hope I'm making some sense…Best,Joe -
- October 29, 2014 at 8:06 am
Shane,
That has to be frustrating and you deserve answers, or at least a better explanation. I mean, if they want to say that you need to be more ambulatory, then that is at least part of an explanation, but the other part is why?I didn't think this would come into play, but perhaps you need to escalate this. I mentioned before about "attending physicians" and "fellows". My understanding of how they operate is that within the Surgery Branch of the NCI of the NIH, Dr. Rosenberg is in charge. Under him are regular NIH staff listed as "investigators", "clinicians", and "scientists", and some of these groups have their own staffs. Then there are "fellows", relatively new doctors who are typically on three-year fellowships, rotating a year at a time through surgery, lab research, and patient care. When you are a patient there, at any one time you should have two doctors assigned to you: an attending physician and a fellow. Once assigned, your fellow is your primary point of contact for the year (or part of a year) until they move on to their next rotation. However, they work under the guidance of the permanent staff, especially the current attending physician. The role of attending rotates more frequently among the investigators and clinicians and while in that role, the attending is in charge of patient care, they're the ones that take charge of inpatient rounds, they're the ones who see new and returning patients in the clinic, along with the fellow. But they rotate every month or two. So the most frequent contact is with the fellow, but the much more experienced physician, to whom you can also speak, is the attending.I explain all this because it sounds like Dr. Park may be a fellow and not an attending. I'm not familiar with her name — at 3+ years since the last time I visited, she could be new, but I checked their website, and I don't see her listed at all among the clinicians or investigators on staff among the familiar names I do know. I was very happy with my fellow when I was there, but there were certainly times that I felt like I needed a better or more experienced explanation and escalated to the attending. They are part of your care team, too, and were always willing to talk with me, on the phone or in person. If it was on the phone, I'd gently ask the fellow who the current attending was and ask if we could arrange a time to speak, and if I wasn't getting clear answers from the fellow, I found I usually got them from the attending.It can be a hard conversation to have, essentially asking to "speak to the manager", but once I did, I never felt that way and you're probably entitled to a better explanation than you're getting. You might also ask what the plan is if the chemo/radiation don't shrink the tumor? Is this just something they want to try first, but if it doesn't help, they'll still bring you in? Just some suggestions to help you get some clarity, hope I'm making some sense…Best,Joe -
- October 29, 2014 at 8:06 am
Shane,
That has to be frustrating and you deserve answers, or at least a better explanation. I mean, if they want to say that you need to be more ambulatory, then that is at least part of an explanation, but the other part is why?I didn't think this would come into play, but perhaps you need to escalate this. I mentioned before about "attending physicians" and "fellows". My understanding of how they operate is that within the Surgery Branch of the NCI of the NIH, Dr. Rosenberg is in charge. Under him are regular NIH staff listed as "investigators", "clinicians", and "scientists", and some of these groups have their own staffs. Then there are "fellows", relatively new doctors who are typically on three-year fellowships, rotating a year at a time through surgery, lab research, and patient care. When you are a patient there, at any one time you should have two doctors assigned to you: an attending physician and a fellow. Once assigned, your fellow is your primary point of contact for the year (or part of a year) until they move on to their next rotation. However, they work under the guidance of the permanent staff, especially the current attending physician. The role of attending rotates more frequently among the investigators and clinicians and while in that role, the attending is in charge of patient care, they're the ones that take charge of inpatient rounds, they're the ones who see new and returning patients in the clinic, along with the fellow. But they rotate every month or two. So the most frequent contact is with the fellow, but the much more experienced physician, to whom you can also speak, is the attending.I explain all this because it sounds like Dr. Park may be a fellow and not an attending. I'm not familiar with her name — at 3+ years since the last time I visited, she could be new, but I checked their website, and I don't see her listed at all among the clinicians or investigators on staff among the familiar names I do know. I was very happy with my fellow when I was there, but there were certainly times that I felt like I needed a better or more experienced explanation and escalated to the attending. They are part of your care team, too, and were always willing to talk with me, on the phone or in person. If it was on the phone, I'd gently ask the fellow who the current attending was and ask if we could arrange a time to speak, and if I wasn't getting clear answers from the fellow, I found I usually got them from the attending.It can be a hard conversation to have, essentially asking to "speak to the manager", but once I did, I never felt that way and you're probably entitled to a better explanation than you're getting. You might also ask what the plan is if the chemo/radiation don't shrink the tumor? Is this just something they want to try first, but if it doesn't help, they'll still bring you in? Just some suggestions to help you get some clarity, hope I'm making some sense…Best,Joe -
- October 30, 2014 at 8:35 pm
Wow Shane. I hope the radiation helps. The only thing I know to say is about the being more ambulatory. It looks like the TIL trial is probably an ECOG of 0 or 1. With all my spine damage I've had that thrown at me too.
Here's a link to what they mean by ECOG:
http://www.ecog.org/general/perf_stat.html
For me now whenever the question comes up I just say I walk 2 miles a day. Which is true. But that only takes about an hour and a half that I break up in 2 or 3 walks. Since I'm in my recliner most of the rest of the time I'm really between a 2 and 3. But I don't mention that and they seem satisfied I'm a 1 which is also kind of true. Heck I do more walking now than I ever did before the disease. Very odd ambulatory rating but it is what they are probably talking about.
Artie
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- October 30, 2014 at 8:35 pm
Wow Shane. I hope the radiation helps. The only thing I know to say is about the being more ambulatory. It looks like the TIL trial is probably an ECOG of 0 or 1. With all my spine damage I've had that thrown at me too.
Here's a link to what they mean by ECOG:
http://www.ecog.org/general/perf_stat.html
For me now whenever the question comes up I just say I walk 2 miles a day. Which is true. But that only takes about an hour and a half that I break up in 2 or 3 walks. Since I'm in my recliner most of the rest of the time I'm really between a 2 and 3. But I don't mention that and they seem satisfied I'm a 1 which is also kind of true. Heck I do more walking now than I ever did before the disease. Very odd ambulatory rating but it is what they are probably talking about.
Artie
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- October 30, 2014 at 8:35 pm
Wow Shane. I hope the radiation helps. The only thing I know to say is about the being more ambulatory. It looks like the TIL trial is probably an ECOG of 0 or 1. With all my spine damage I've had that thrown at me too.
Here's a link to what they mean by ECOG:
http://www.ecog.org/general/perf_stat.html
For me now whenever the question comes up I just say I walk 2 miles a day. Which is true. But that only takes about an hour and a half that I break up in 2 or 3 walks. Since I'm in my recliner most of the rest of the time I'm really between a 2 and 3. But I don't mention that and they seem satisfied I'm a 1 which is also kind of true. Heck I do more walking now than I ever did before the disease. Very odd ambulatory rating but it is what they are probably talking about.
Artie
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- October 29, 2014 at 4:28 am
So today I finally heard from doctor at NIH. I explained what my reasons why I thought I'm ready to go back for TIL therapy: feeling much stronger, moving around better and more ambulatory, drastically reduced my pain medication (in my opinion barely using any), my tumor grew by 1cm and my pelvic tumor shrunk by 4cm while on two rounds of chemo.
So in my opinion Dr. Park did not really give me a great reason why I could go back and get the TIL therapy. She said they discussed my case and said they wanted me to go through with the radiation and then few more rounds of chemo. But also said I was basically needed to almost off pain medication. Seems odd because most stage 4 patients woukd have some pain. She also said I need to be able to more ambulatory – but I still don't understand how they mean by. I couldn't get a good answer.
Bottom line it was frustrating and to me I feel like I'll never get back there. Seems like they are making up the rules along we go.
Either way I'll going to start radiation tomorrow and I'm going to try and look for more clinical trials. Problem there I can't find any trials because I have done almost all the treatments – except IL2 or biochemo.
Thanks for listening and for the help,
Shane
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- October 29, 2014 at 4:28 am
So today I finally heard from doctor at NIH. I explained what my reasons why I thought I'm ready to go back for TIL therapy: feeling much stronger, moving around better and more ambulatory, drastically reduced my pain medication (in my opinion barely using any), my tumor grew by 1cm and my pelvic tumor shrunk by 4cm while on two rounds of chemo.
So in my opinion Dr. Park did not really give me a great reason why I could go back and get the TIL therapy. She said they discussed my case and said they wanted me to go through with the radiation and then few more rounds of chemo. But also said I was basically needed to almost off pain medication. Seems odd because most stage 4 patients woukd have some pain. She also said I need to be able to more ambulatory – but I still don't understand how they mean by. I couldn't get a good answer.
Bottom line it was frustrating and to me I feel like I'll never get back there. Seems like they are making up the rules along we go.
Either way I'll going to start radiation tomorrow and I'm going to try and look for more clinical trials. Problem there I can't find any trials because I have done almost all the treatments – except IL2 or biochemo.
Thanks for listening and for the help,
Shane
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- October 27, 2014 at 5:28 pm
Hi Shane,
Hoping you've heard back from NIH — I'm not familiar with Dr. Park and I thought I knew all the attendings that cover the immunotherapy and TIL patients under Dr. Rosenberg. They rotate every 1-2 months among the staff clinicians and investigators. I haven't seen all of them, but over the year I was there, had 4 or 5 of them and knew of the others. Is Dr. Park the attending or your fellow? (The fellows are on year-long rotations as part of a longer fellowship).
Anyway, I'm still wondering why specifically the groin tumor is causing them concern about continuing the TIL, especially now that they have a viable cell infusion grown, frozen, and ready to go. Again, I hope you can get a clear answer to that.
The injectionables/intralesionals have seemed like a logical approach for shrinking a tumor, but it sounds like even though it's something that should in theory work, that there aren't any trials that are offering them for this specific use, which is frustrating. Perhaps once you hear from NIH what their goal is with respect to this tumor, you'll have a better idea of whether the chemotherapy and radiation can get you there, e.g. do they need a 50% reduction before beginning (or whatever)?
I have heard that prior nivolumab isn't an exclusion for Keytruda and that there are cases of response to one of the anti-PD-1's after not responding to the other. That's anecdotal, you might be able to find better data from others here. Also, have you checked out the anti-PD-L1 trials, like Roche's MPDL3280A or AstraZeneca's MEDI4736?
Will be keeping an eye out for your updates.
Best,
Joe -
- October 27, 2014 at 5:28 pm
Hi Shane,
Hoping you've heard back from NIH — I'm not familiar with Dr. Park and I thought I knew all the attendings that cover the immunotherapy and TIL patients under Dr. Rosenberg. They rotate every 1-2 months among the staff clinicians and investigators. I haven't seen all of them, but over the year I was there, had 4 or 5 of them and knew of the others. Is Dr. Park the attending or your fellow? (The fellows are on year-long rotations as part of a longer fellowship).
Anyway, I'm still wondering why specifically the groin tumor is causing them concern about continuing the TIL, especially now that they have a viable cell infusion grown, frozen, and ready to go. Again, I hope you can get a clear answer to that.
The injectionables/intralesionals have seemed like a logical approach for shrinking a tumor, but it sounds like even though it's something that should in theory work, that there aren't any trials that are offering them for this specific use, which is frustrating. Perhaps once you hear from NIH what their goal is with respect to this tumor, you'll have a better idea of whether the chemotherapy and radiation can get you there, e.g. do they need a 50% reduction before beginning (or whatever)?
I have heard that prior nivolumab isn't an exclusion for Keytruda and that there are cases of response to one of the anti-PD-1's after not responding to the other. That's anecdotal, you might be able to find better data from others here. Also, have you checked out the anti-PD-L1 trials, like Roche's MPDL3280A or AstraZeneca's MEDI4736?
Will be keeping an eye out for your updates.
Best,
Joe
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- October 25, 2014 at 6:46 am
Hi all thanks for the great responses. They all certainly have directed me toward more information. Joe I appreciate your detailed and informative posts. I remember your experiences at the NIH before, and you know where I'm at now, and trying to get back there. I actually emailed my doctor (Dr. Park is on rotation now) the other day and see if I could go back now because I'm feeling better and my cells are frozen, but I have not heard anything back. I thought I might get response today since they discuss about their patients on Friday.
So, I decided to just stay on course with the radiation to the groin and then follow a few rounds of chemo. But I'm hopefully to keep on this information and try to set up an appt in the next few weeks with a doctor, or cancer center, that is actually doing something like this. I think I might try to reach out to Dr. Daud at UCSF, and Dr.Weber at Moffit. Both those centers seem like they are doing good things. I'm currently at U of Chicago and I'm pleased there but I want to listen to options that aren't being offered here. I did have contact at MDA but my onc there, but Dr. Papa retired abruptly.
But, regarding the injections treatments, to me, I need these injections quickly, similar like how radiation is – where you do the treatment, and then back to a more complete systemic treatment within a few weeks: such as the TIL therapy, Keytruda (if I can even get because I did participate a nivolumumab trial). I definitely don't want to risk getting in a trial with intralesional treatment. Something that works directed to a certain tumor must be a quick.
Thanks again for all the responses and help posting some of the statistics. I just wish there is some more active treatments going on. And next to hear about these from the doctor.
-Shane
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- October 25, 2014 at 6:46 am
Hi all thanks for the great responses. They all certainly have directed me toward more information. Joe I appreciate your detailed and informative posts. I remember your experiences at the NIH before, and you know where I'm at now, and trying to get back there. I actually emailed my doctor (Dr. Park is on rotation now) the other day and see if I could go back now because I'm feeling better and my cells are frozen, but I have not heard anything back. I thought I might get response today since they discuss about their patients on Friday.
So, I decided to just stay on course with the radiation to the groin and then follow a few rounds of chemo. But I'm hopefully to keep on this information and try to set up an appt in the next few weeks with a doctor, or cancer center, that is actually doing something like this. I think I might try to reach out to Dr. Daud at UCSF, and Dr.Weber at Moffit. Both those centers seem like they are doing good things. I'm currently at U of Chicago and I'm pleased there but I want to listen to options that aren't being offered here. I did have contact at MDA but my onc there, but Dr. Papa retired abruptly.
But, regarding the injections treatments, to me, I need these injections quickly, similar like how radiation is – where you do the treatment, and then back to a more complete systemic treatment within a few weeks: such as the TIL therapy, Keytruda (if I can even get because I did participate a nivolumumab trial). I definitely don't want to risk getting in a trial with intralesional treatment. Something that works directed to a certain tumor must be a quick.
Thanks again for all the responses and help posting some of the statistics. I just wish there is some more active treatments going on. And next to hear about these from the doctor.
-Shane
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