› Forums › General Melanoma Community › Yervoy/Opdivo Failure Question
- This topic has 24 replies, 5 voices, and was last updated 9 years, 10 months ago by
Bubbles.
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- May 6, 2016 at 4:49 pm
I have battled with Metastatic Melanoma since November 2013- it began as a regressed mole on center of my back (removed and radiated) and has since then only been in my left side (armpit lymph nodes, upper clavicle area, super clavicle area, and most recently my arm from side of chest to mid bicep). I had lymph nodes removed under left arm/ surgery to clean out upper clavicle area and was clean for 1 year on Tafinlar/MEK combo but was told to get off of these meds due to potential risks for longterm use. Had recurrence within 30 days of stopping the combination drugs on arm/chest area and started Yervoy/Opdivo (finished 4th dose April 21). Through this, my tumor actually doubled in size and was very red, and a piece of dead tumor popped up on top of my tumor creating what they thought was infection. It busted open and leaked and they decided I should have surgery to open it/drain fully it due to risk of infection. I received an IV of strongest antibiotic for 14 days and the culture of the area they opened was done and they decided it was not infection since nothing grew (thought it was possibly melting of tumor). I now have a very large (tennis ball sized) open wound that continues to leak (liqufactive necrosis possibly) that must be changed twice daily. I don't have a lot of movement capability in my arm. I went to MD Anderson to see what my next steps were due to the thought that they Opdivo/Yervoy combination immunotherapy does not seem to be working fast enough and Doctors at MD said that now my TILS (which I harvested with an earlier recurrance), chemotherapy, and experimental drugs will not be an option for me now due to the risk of infection to my open wound. They said that proton therapy and the herpes shot into the tumor are not an option due to the size of the tumor. They truly said I have 2 options: 1. Amputate my arm (which will not get rid of cancer in chest area, just help with pain) and possibly go back on Tafinlar/MEK which did not work previously. 2. Radiate the arm and continue on with Opdivo infusions every 3 weeks (and they are not sure that I am respnding to this due to tumor growth through the Yervoy/Opdivo). I feel like there has to be something else seeing that I do not have cancer anywhere else in my body other than arm/small area on chest (all connected as one large mass) , are there any suggestions of another melanoma doctor/establishment for me to go to get another opinion?
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- May 6, 2016 at 9:43 pm
My goodness, you have been through a great deal!!!
Questions:
1. Have they biopsied the tumor to determine whether it is only dead tissue remaining vs active tumor growth? This is important because if it all really is dead tissue…this is only pseudoprogression and the ipi/nivo combo IS working.
2. I'm not sure if you mean you have intransit disease or just regional extension. If it is intransit…this means this is an invasion of the lymph channel and would be a good place to use intralesional therapy (of which there are several). If it is regional extension, then yes…systemic therapy and radiation might be a better option…I realize you have been doing this.
3. I think isolated limb perfusion of your arm might be an option to look into before amputation. This would be possibly palliative as well as a way to reduce tumor bulk.
4. You seem to have responded to taf/mek….you just recurred when you stopped the drug…if I am reading things right. You may be able to restart that combo and decrease tumor bulk and then change to an immunotherapy….although with alternate dosing schedules….some folks are able to maintain on BRAFi combos for many years.
5. Moffit in Tampa, Sloan Kettering in NY as well as Weber at NYU, Sznol at Yale, Omid in Los Angeles….would all be great options for a second opinion…and there are many more.
I wish you well. celeste
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- May 6, 2016 at 9:43 pm
My goodness, you have been through a great deal!!!
Questions:
1. Have they biopsied the tumor to determine whether it is only dead tissue remaining vs active tumor growth? This is important because if it all really is dead tissue…this is only pseudoprogression and the ipi/nivo combo IS working.
2. I'm not sure if you mean you have intransit disease or just regional extension. If it is intransit…this means this is an invasion of the lymph channel and would be a good place to use intralesional therapy (of which there are several). If it is regional extension, then yes…systemic therapy and radiation might be a better option…I realize you have been doing this.
3. I think isolated limb perfusion of your arm might be an option to look into before amputation. This would be possibly palliative as well as a way to reduce tumor bulk.
4. You seem to have responded to taf/mek….you just recurred when you stopped the drug…if I am reading things right. You may be able to restart that combo and decrease tumor bulk and then change to an immunotherapy….although with alternate dosing schedules….some folks are able to maintain on BRAFi combos for many years.
5. Moffit in Tampa, Sloan Kettering in NY as well as Weber at NYU, Sznol at Yale, Omid in Los Angeles….would all be great options for a second opinion…and there are many more.
I wish you well. celeste
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- May 7, 2016 at 5:09 pm
Thank you for your response Celeste.
1. There is dead and active tumor in the area that they opened up. It is dying, just not quickly.
2. I believe that I have an extracpaular extension. I have not yet radiated this particular area so this is an option. Radiation on primary site and on clavicle have both proven successful. This tumor is quite large around 10 x 14 since the individual tumors have all grown into one. The idea of intralesional therapy such as T-Vec was shot down due to the size of the tumor.
3. I am checking into this, thank you so much for bringing it up as it was not even mentioned. The only thing i am unsure on is if this could be used with a very large open wound on the tumor area since a tourniquet blood pressure cuff is used but I am optimistic seeing this.
4. I responded quite well to TAF/MEK for a whole year. When the doctor told me to get off of it, I had a recurrance within 30 days. I then got back on the medicine combination immediately after seeing the pop up and through taking the medicine there were still more small tumors that popped up on my arm (that eventually led up to the one large mass) which is why they said that I now had a resistance to it (possibly from stopping starting too much). I have heard about people on the combinations for 5 years plus and that is part of my frustration as it was working to keep me cancer free and after listening to the doctor to get off of it I relapsed.
5. Thank you so much for the doctor recommendations! I am hopeful that through a second opinion I will get more hope.
Can't thank you enough for your time! Have a great one!
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- May 7, 2016 at 5:09 pm
Thank you for your response Celeste.
1. There is dead and active tumor in the area that they opened up. It is dying, just not quickly.
2. I believe that I have an extracpaular extension. I have not yet radiated this particular area so this is an option. Radiation on primary site and on clavicle have both proven successful. This tumor is quite large around 10 x 14 since the individual tumors have all grown into one. The idea of intralesional therapy such as T-Vec was shot down due to the size of the tumor.
3. I am checking into this, thank you so much for bringing it up as it was not even mentioned. The only thing i am unsure on is if this could be used with a very large open wound on the tumor area since a tourniquet blood pressure cuff is used but I am optimistic seeing this.
4. I responded quite well to TAF/MEK for a whole year. When the doctor told me to get off of it, I had a recurrance within 30 days. I then got back on the medicine combination immediately after seeing the pop up and through taking the medicine there were still more small tumors that popped up on my arm (that eventually led up to the one large mass) which is why they said that I now had a resistance to it (possibly from stopping starting too much). I have heard about people on the combinations for 5 years plus and that is part of my frustration as it was working to keep me cancer free and after listening to the doctor to get off of it I relapsed.
5. Thank you so much for the doctor recommendations! I am hopeful that through a second opinion I will get more hope.
Can't thank you enough for your time! Have a great one!
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- May 7, 2016 at 5:09 pm
Thank you for your response Celeste.
1. There is dead and active tumor in the area that they opened up. It is dying, just not quickly.
2. I believe that I have an extracpaular extension. I have not yet radiated this particular area so this is an option. Radiation on primary site and on clavicle have both proven successful. This tumor is quite large around 10 x 14 since the individual tumors have all grown into one. The idea of intralesional therapy such as T-Vec was shot down due to the size of the tumor.
3. I am checking into this, thank you so much for bringing it up as it was not even mentioned. The only thing i am unsure on is if this could be used with a very large open wound on the tumor area since a tourniquet blood pressure cuff is used but I am optimistic seeing this.
4. I responded quite well to TAF/MEK for a whole year. When the doctor told me to get off of it, I had a recurrance within 30 days. I then got back on the medicine combination immediately after seeing the pop up and through taking the medicine there were still more small tumors that popped up on my arm (that eventually led up to the one large mass) which is why they said that I now had a resistance to it (possibly from stopping starting too much). I have heard about people on the combinations for 5 years plus and that is part of my frustration as it was working to keep me cancer free and after listening to the doctor to get off of it I relapsed.
5. Thank you so much for the doctor recommendations! I am hopeful that through a second opinion I will get more hope.
Can't thank you enough for your time! Have a great one!
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- May 6, 2016 at 9:43 pm
My goodness, you have been through a great deal!!!
Questions:
1. Have they biopsied the tumor to determine whether it is only dead tissue remaining vs active tumor growth? This is important because if it all really is dead tissue…this is only pseudoprogression and the ipi/nivo combo IS working.
2. I'm not sure if you mean you have intransit disease or just regional extension. If it is intransit…this means this is an invasion of the lymph channel and would be a good place to use intralesional therapy (of which there are several). If it is regional extension, then yes…systemic therapy and radiation might be a better option…I realize you have been doing this.
3. I think isolated limb perfusion of your arm might be an option to look into before amputation. This would be possibly palliative as well as a way to reduce tumor bulk.
4. You seem to have responded to taf/mek….you just recurred when you stopped the drug…if I am reading things right. You may be able to restart that combo and decrease tumor bulk and then change to an immunotherapy….although with alternate dosing schedules….some folks are able to maintain on BRAFi combos for many years.
5. Moffit in Tampa, Sloan Kettering in NY as well as Weber at NYU, Sznol at Yale, Omid in Los Angeles….would all be great options for a second opinion…and there are many more.
I wish you well. celeste
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- May 7, 2016 at 1:29 pm
Hi Mooglide, just to add to what Bubbles gave you, point 3 isolated limb perfusion. This is a link to MIF and a video that talks about the procedure at the 22min mark.https://www.youtube.com/watch?v=YrW4UdkCu8I Best wishes!!!! Ed
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- May 7, 2016 at 1:29 pm
Hi Mooglide, just to add to what Bubbles gave you, point 3 isolated limb perfusion. This is a link to MIF and a video that talks about the procedure at the 22min mark.https://www.youtube.com/watch?v=YrW4UdkCu8I Best wishes!!!! Ed
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- May 7, 2016 at 1:29 pm
Hi Mooglide, just to add to what Bubbles gave you, point 3 isolated limb perfusion. This is a link to MIF and a video that talks about the procedure at the 22min mark.https://www.youtube.com/watch?v=YrW4UdkCu8I Best wishes!!!! Ed
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- May 7, 2016 at 3:32 pm
I have been seen at several places (UCSF, Providence Portland, Kaiser and once at MDA). For sure I wouldn't accept an opinion *just* because it's MDA. At this kind of juncture I would want to triangulate with several opinions.
So I echo the suggestion to get a second opinion. I'd consider even going beyond to a third opinion, etc. Maybe they'll say the same as MDA, in which case their extreme-sounding amputation recommendation might be worth additional very serious consideration. On the other hand maybe another oncologist(s) might have other thoughts.
I went to MDA once for a second opinion. They have a lot of oncologists. I don't know how much a given oncologist there consults with others. Sounds like yours is the kind of case that would ask for some internal consultation. Which is not the same as getting additional opinions at a different center of expertise.
I hope you get your new treatment plan, one that you have confidence in trying, as soon as is doable.
– Kyle
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- May 7, 2016 at 3:32 pm
I have been seen at several places (UCSF, Providence Portland, Kaiser and once at MDA). For sure I wouldn't accept an opinion *just* because it's MDA. At this kind of juncture I would want to triangulate with several opinions.
So I echo the suggestion to get a second opinion. I'd consider even going beyond to a third opinion, etc. Maybe they'll say the same as MDA, in which case their extreme-sounding amputation recommendation might be worth additional very serious consideration. On the other hand maybe another oncologist(s) might have other thoughts.
I went to MDA once for a second opinion. They have a lot of oncologists. I don't know how much a given oncologist there consults with others. Sounds like yours is the kind of case that would ask for some internal consultation. Which is not the same as getting additional opinions at a different center of expertise.
I hope you get your new treatment plan, one that you have confidence in trying, as soon as is doable.
– Kyle
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- May 7, 2016 at 3:32 pm
I have been seen at several places (UCSF, Providence Portland, Kaiser and once at MDA). For sure I wouldn't accept an opinion *just* because it's MDA. At this kind of juncture I would want to triangulate with several opinions.
So I echo the suggestion to get a second opinion. I'd consider even going beyond to a third opinion, etc. Maybe they'll say the same as MDA, in which case their extreme-sounding amputation recommendation might be worth additional very serious consideration. On the other hand maybe another oncologist(s) might have other thoughts.
I went to MDA once for a second opinion. They have a lot of oncologists. I don't know how much a given oncologist there consults with others. Sounds like yours is the kind of case that would ask for some internal consultation. Which is not the same as getting additional opinions at a different center of expertise.
I hope you get your new treatment plan, one that you have confidence in trying, as soon as is doable.
– Kyle
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- May 7, 2016 at 5:47 pm
Let me comment on trying another run at BRAF-MEK. It sounds like your first break was about 30 days, which is short. I was off BRAF-MEK for 120 days following progression (also somewhat short) and was able to return to it. On my second run (of about 4-5 months) it melted several newer small tumors at the outset and the helped me remain stable. It sounds like you've been off of BRAF-MEK for awhile. I'd think about giving it another shot. You should know fairly quickly whether it is working.
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- May 7, 2016 at 5:47 pm
Let me comment on trying another run at BRAF-MEK. It sounds like your first break was about 30 days, which is short. I was off BRAF-MEK for 120 days following progression (also somewhat short) and was able to return to it. On my second run (of about 4-5 months) it melted several newer small tumors at the outset and the helped me remain stable. It sounds like you've been off of BRAF-MEK for awhile. I'd think about giving it another shot. You should know fairly quickly whether it is working.
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- May 7, 2016 at 6:45 pm
Glad you've gotten some support and more ideas here!! I agree very much with additional consultation and with Mat's idea of a BRAF/MEK retry. I don't think it could hurt. Also…you might try a slightly different combo than the one your were on as there are several. Hang in there. We're all rooting for you!!! c
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- May 7, 2016 at 6:45 pm
Glad you've gotten some support and more ideas here!! I agree very much with additional consultation and with Mat's idea of a BRAF/MEK retry. I don't think it could hurt. Also…you might try a slightly different combo than the one your were on as there are several. Hang in there. We're all rooting for you!!! c
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- May 7, 2016 at 6:45 pm
Glad you've gotten some support and more ideas here!! I agree very much with additional consultation and with Mat's idea of a BRAF/MEK retry. I don't think it could hurt. Also…you might try a slightly different combo than the one your were on as there are several. Hang in there. We're all rooting for you!!! c
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- May 7, 2016 at 5:47 pm
Let me comment on trying another run at BRAF-MEK. It sounds like your first break was about 30 days, which is short. I was off BRAF-MEK for 120 days following progression (also somewhat short) and was able to return to it. On my second run (of about 4-5 months) it melted several newer small tumors at the outset and the helped me remain stable. It sounds like you've been off of BRAF-MEK for awhile. I'd think about giving it another shot. You should know fairly quickly whether it is working.
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Tagged: cutaneous melanoma
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