› Forums › General Melanoma Community › Duke, yervoy,stage 4 and options
- This topic has 42 replies, 6 voices, and was last updated 7 years, 9 months ago by
Lee Parlier.
- Post
-
- July 28, 2016 at 3:38 pm
While I am receiving my 4th and final dose of yervoy 10 mg I wanted to do something productive (and pass the time) so I will share as much information as I can. I have mentioned the archaic view that my Dr.'s have had with immunotherapies and their fears of the side effects. I started yervoy 8 weeks ago today under the guidance of a regular oncologist. It took a month for me to finally convince him that interferon was not an option and yervoy was my choice. I stress 2 things: 1) Regular oncologist 2) My choice I should have began my melanoma journey with a mel specialist and if I do have an option in treatment with a better chance at achieving NED, I have the final say.
I recently went to Duke Cancer Center and spoke with Dr. Salamas (mel specialist) and Dr Moscow (cancer Surgeon) I want to say it is a night and day difference in question and answer sessions to what I have been used to. I recently had a pet scan (mid yervoy treatment) which showed multiple tumors on liver etc.
Answers from Dr's Salamas and Moscow (prolly mel 101 for most) but hope there's some useful info for some.
1) What are these sobcutaneous nodules that popped up after starting yervoy?
ANSWER: They are in transit cancer that reacts to the treatment. (even though I did have a biopsy that showed some were) She said biopsies are not always reliable when dealing with this reaction and her experience showed most had some melanoma in the sub q tumors.
2) I started with 50 or so mel sub q's and I currently have 9 visible, is this a sign I am a responder?
ANSWER: I am caustiously optimistic that you are a responder based on the disappearance and shrinkage of the visible tumors. The chance of being a total responder in my experience is around 12% but you have signs of being at least a partial responder.
3) Does my chance of being a total responder increase since I will complete the 10 mg rather than the 3 mg doses?
ANSWER: People are different but in my experience the benefit may increase the chances of being a responder by 5% with substantially more risk of toxic side effects. Sometimes more is not better.
4) My mid treatment pet scan showed new tumors etc. Is there any conclusion to be drawn?
ANSWER: Not really, The pet scan was showing activity but since I do not have a base line scan to compare it to it is impossible to say. My feeling is that the lesions were there before and are reacting to the treatment . I have seen pet scans light up and after treatment is through and it has been dead tumors that did react well to the treatment. I want a pet scan 2 months after your final treatment and we will determine if the tumors are the same, better or worse.If they are the same or better we set up the next pet scan and watch and wait. If they grow we move onto a different treatment and since you are stage 4 now, you have more options for treatments which have out performed yervoy in trials. With yervoy, there is usually a worsening before the treament kicks in even though everyone is different, most experience side effects and or inflammation from immunotherapies.
5) Would I benefit from T-VEC INJECTIONS IN THE SUB Q TUMORS?
ANSWER: Stage 4 patient's are not eligible to receive t-vec injections and again, I am cautiously optimistic the positive reaction to the visual tumors with the yervoy that I wouldn't recommend it anyway.
6) What kind of adjuavant therapy can I receive when I am NED (NOT IF)?
ANSWER: There is no adjuvant therapy at stage 4. We will wait and see if the yervoy kicks in and will have a better idea after your next scans. Yervoy can take a while to rev up ypur immune system. Scans every 3 months to monitor. If you are worse, we move to something else. We have new trials daily at Duke and since yervoy was approved, we have other treatments that have shown to be more effective than yervoy.
There were some other things we discussed but suffice to say my experience with a specialist was at least more informative than I have been accustomed. I didn't hear all good news, didn't hear all bad but I did feel like I had some direction when I left.
Will I be a responder to yervoy? Don't know but glad I made the decision and wouldn't change it.
Would I begin my journey with a mel specialist if I had a time machine? Absoluteley and a surgical onc too.
I would compare a regular oncologist and a melanoma specialist like this:
You are going to a big city you have never been to. You're nervous about losing your way. You miss a turn and you are lost and you are holdin your map quest directions as you drive. You may well find your way back on the right path but you spent a lot of valuable time lost.
You are going to a big city and turn on your GPS. You get future instructions on turns and what lane to get in. You make a wrong turn and the GPS gets you back on track.
Maybe over simplifying but I thought of this as I was cussing my way out of Durham trying to find my way. My yervoy drip is beeping. Best of Luck to everone fighting. Can be scary, but it's not hopeless
- Replies
-
-
- July 28, 2016 at 4:45 pm
This is a great post and I hope a lot of people benefit from it. Very informative.
Thing about the melanoma specialists is right on.
One thing I wanted to add for re: Stage 4 NED. I'm in a little different situation where I went from Stage 4 to NED in 2 days (had a single bleeding brain tumor resected with no other evidence of disease).The doctors (mel experts at Dana Farber in Boston) recommended radiation and no medical treatment at that time, but added that although there is technically no FDA approved medical treatment for adjuvant treatment of Stage 4, they were confident that they could've made a case for the Ipi/Nivo combo in my case and gotten it approved by insurance.
-
- July 28, 2016 at 4:45 pm
This is a great post and I hope a lot of people benefit from it. Very informative.
Thing about the melanoma specialists is right on.
One thing I wanted to add for re: Stage 4 NED. I'm in a little different situation where I went from Stage 4 to NED in 2 days (had a single bleeding brain tumor resected with no other evidence of disease).The doctors (mel experts at Dana Farber in Boston) recommended radiation and no medical treatment at that time, but added that although there is technically no FDA approved medical treatment for adjuvant treatment of Stage 4, they were confident that they could've made a case for the Ipi/Nivo combo in my case and gotten it approved by insurance.
-
- July 28, 2016 at 4:45 pm
This is a great post and I hope a lot of people benefit from it. Very informative.
Thing about the melanoma specialists is right on.
One thing I wanted to add for re: Stage 4 NED. I'm in a little different situation where I went from Stage 4 to NED in 2 days (had a single bleeding brain tumor resected with no other evidence of disease).The doctors (mel experts at Dana Farber in Boston) recommended radiation and no medical treatment at that time, but added that although there is technically no FDA approved medical treatment for adjuvant treatment of Stage 4, they were confident that they could've made a case for the Ipi/Nivo combo in my case and gotten it approved by insurance.
-
- July 28, 2016 at 6:00 pm
Hi Lee,
Way to go! You are certainly a quick study. You asked a lot of questions on this board and stimulated many thoughts and responses. You went into your meeting with a specialist with so much knowledge, and were able to ask great questions. This should be a case study on "what to do". I started my journey knowing just about nothing. And with no specialist in my entire state which is geographically isolated, it took me a long time to realize I needed a specialist, and a lot of money since then traveling to see one, but oh what a difference! As for your results, well, at least there was some promising news and as explained, the Yervoy may not have even really kicked in yet. The waiting between scans can be torturous but it is how the game is played. Well done and best to you in the battle.
Gary
-
- July 28, 2016 at 6:00 pm
Hi Lee,
Way to go! You are certainly a quick study. You asked a lot of questions on this board and stimulated many thoughts and responses. You went into your meeting with a specialist with so much knowledge, and were able to ask great questions. This should be a case study on "what to do". I started my journey knowing just about nothing. And with no specialist in my entire state which is geographically isolated, it took me a long time to realize I needed a specialist, and a lot of money since then traveling to see one, but oh what a difference! As for your results, well, at least there was some promising news and as explained, the Yervoy may not have even really kicked in yet. The waiting between scans can be torturous but it is how the game is played. Well done and best to you in the battle.
Gary
-
- July 28, 2016 at 6:00 pm
Hi Lee,
Way to go! You are certainly a quick study. You asked a lot of questions on this board and stimulated many thoughts and responses. You went into your meeting with a specialist with so much knowledge, and were able to ask great questions. This should be a case study on "what to do". I started my journey knowing just about nothing. And with no specialist in my entire state which is geographically isolated, it took me a long time to realize I needed a specialist, and a lot of money since then traveling to see one, but oh what a difference! As for your results, well, at least there was some promising news and as explained, the Yervoy may not have even really kicked in yet. The waiting between scans can be torturous but it is how the game is played. Well done and best to you in the battle.
Gary
-
- July 28, 2016 at 6:28 pm
Hi Lee,
There was one thing I am confused about. The answer about T-Vec. The main criteria for T-Vec and other intralesional therapies is having tumors easily accessible to injections, meaning sub-cutaneous. This would be by definition a Stage IV condition (spread beyond lymph nodes). I have been considered a possible candidate for T-Vec, and participated in a trial that used intralesional injections. I think this one point needs clarification for those considering the treatment option. Am I wrong?
Gary
-
- July 28, 2016 at 7:17 pm
I agree 100% Gary. I asked something along the lines of "Look I have these remaining sub q's so why not inject them? We can see them lets attack them. She said, "stage 4 patients are not eligible because you have other tumors in you." (are stage 4 ned eligible if one pops up? No idea) Anyway she said it was not approved for stage 4. If someone wants to research it more, then I would look into it. I would have been eligible if I did not have my pet scan which showed tumors inside. I didn't dig deeper because I had other pressing things but also mine have been dissolving.
She did say she wouldn't do it even if I was eligible because she wouldn't risk adding more toxins since I went the max dose of yervoy. (too risky) She said the t-vec injections had a 25%success rate. The surgerical oncologist, who would have administer them, said it was actually the herpes virus injected into you to stimulate the yervoy to attack harder. I told him I was not interested in telling anyone that a male surgeon gave me herpes in his office so we dropped the topic. If you are inbterested I am sure you could dig deeper.
-
- July 28, 2016 at 7:17 pm
I agree 100% Gary. I asked something along the lines of "Look I have these remaining sub q's so why not inject them? We can see them lets attack them. She said, "stage 4 patients are not eligible because you have other tumors in you." (are stage 4 ned eligible if one pops up? No idea) Anyway she said it was not approved for stage 4. If someone wants to research it more, then I would look into it. I would have been eligible if I did not have my pet scan which showed tumors inside. I didn't dig deeper because I had other pressing things but also mine have been dissolving.
She did say she wouldn't do it even if I was eligible because she wouldn't risk adding more toxins since I went the max dose of yervoy. (too risky) She said the t-vec injections had a 25%success rate. The surgerical oncologist, who would have administer them, said it was actually the herpes virus injected into you to stimulate the yervoy to attack harder. I told him I was not interested in telling anyone that a male surgeon gave me herpes in his office so we dropped the topic. If you are inbterested I am sure you could dig deeper.
-
- July 28, 2016 at 7:17 pm
I agree 100% Gary. I asked something along the lines of "Look I have these remaining sub q's so why not inject them? We can see them lets attack them. She said, "stage 4 patients are not eligible because you have other tumors in you." (are stage 4 ned eligible if one pops up? No idea) Anyway she said it was not approved for stage 4. If someone wants to research it more, then I would look into it. I would have been eligible if I did not have my pet scan which showed tumors inside. I didn't dig deeper because I had other pressing things but also mine have been dissolving.
She did say she wouldn't do it even if I was eligible because she wouldn't risk adding more toxins since I went the max dose of yervoy. (too risky) She said the t-vec injections had a 25%success rate. The surgerical oncologist, who would have administer them, said it was actually the herpes virus injected into you to stimulate the yervoy to attack harder. I told him I was not interested in telling anyone that a male surgeon gave me herpes in his office so we dropped the topic. If you are inbterested I am sure you could dig deeper.
-
- July 28, 2016 at 7:53 pm
Hi Lee,
Again, there is a big disconnect from what I know and what you were told. Very interesting. Perhaps Ed will provide a video link or Celeste can chime in. But T-Vec was designed to be a systemic treatment. Treat an easily assessable tumor, and trigger an all-over body systemic response (teach immune system to recognize all tumors). And by the way, you do not actually contract the virus from the shots, Again, just glad you have been getting some results with minimal side-effects from ipi.
Gary
-
- July 28, 2016 at 7:58 pm
I know you don't contrat the virus. Was said as a joke to the doc's. It was tounge in cheek. Like I said, I didn't stay on the topic long and had other things to discuss. The comment was said completely as a joke. You can research more and answer your questions. My knowledge is limited.
-
- July 28, 2016 at 8:28 pm
Hi guys, this is the most recent one that I have listened to. Great panel and many other great topics covered by this group. Best Wishes!!! Ed https://www.youtube.com/watch?v=HIK3fLI7Hto
-
- July 29, 2016 at 12:03 pm
There is also Robert H Andtbacka speaking at the Angeles Clinic in 2015. https://www.youtube.com/watch?v=Ml1xmPGjV7M
-
- July 29, 2016 at 12:03 pm
There is also Robert H Andtbacka speaking at the Angeles Clinic in 2015. https://www.youtube.com/watch?v=Ml1xmPGjV7M
-
- July 29, 2016 at 12:03 pm
There is also Robert H Andtbacka speaking at the Angeles Clinic in 2015. https://www.youtube.com/watch?v=Ml1xmPGjV7M
-
- July 28, 2016 at 8:28 pm
Hi guys, this is the most recent one that I have listened to. Great panel and many other great topics covered by this group. Best Wishes!!! Ed https://www.youtube.com/watch?v=HIK3fLI7Hto
-
- July 28, 2016 at 8:28 pm
Hi guys, this is the most recent one that I have listened to. Great panel and many other great topics covered by this group. Best Wishes!!! Ed https://www.youtube.com/watch?v=HIK3fLI7Hto
-
- July 28, 2016 at 7:58 pm
I know you don't contrat the virus. Was said as a joke to the doc's. It was tounge in cheek. Like I said, I didn't stay on the topic long and had other things to discuss. The comment was said completely as a joke. You can research more and answer your questions. My knowledge is limited.
-
- July 28, 2016 at 7:58 pm
I know you don't contrat the virus. Was said as a joke to the doc's. It was tounge in cheek. Like I said, I didn't stay on the topic long and had other things to discuss. The comment was said completely as a joke. You can research more and answer your questions. My knowledge is limited.
-
- July 28, 2016 at 7:53 pm
Hi Lee,
Again, there is a big disconnect from what I know and what you were told. Very interesting. Perhaps Ed will provide a video link or Celeste can chime in. But T-Vec was designed to be a systemic treatment. Treat an easily assessable tumor, and trigger an all-over body systemic response (teach immune system to recognize all tumors). And by the way, you do not actually contract the virus from the shots, Again, just glad you have been getting some results with minimal side-effects from ipi.
Gary
-
- July 28, 2016 at 7:53 pm
Hi Lee,
Again, there is a big disconnect from what I know and what you were told. Very interesting. Perhaps Ed will provide a video link or Celeste can chime in. But T-Vec was designed to be a systemic treatment. Treat an easily assessable tumor, and trigger an all-over body systemic response (teach immune system to recognize all tumors). And by the way, you do not actually contract the virus from the shots, Again, just glad you have been getting some results with minimal side-effects from ipi.
Gary
-
- July 28, 2016 at 6:28 pm
Hi Lee,
There was one thing I am confused about. The answer about T-Vec. The main criteria for T-Vec and other intralesional therapies is having tumors easily accessible to injections, meaning sub-cutaneous. This would be by definition a Stage IV condition (spread beyond lymph nodes). I have been considered a possible candidate for T-Vec, and participated in a trial that used intralesional injections. I think this one point needs clarification for those considering the treatment option. Am I wrong?
Gary
-
- July 28, 2016 at 6:28 pm
Hi Lee,
There was one thing I am confused about. The answer about T-Vec. The main criteria for T-Vec and other intralesional therapies is having tumors easily accessible to injections, meaning sub-cutaneous. This would be by definition a Stage IV condition (spread beyond lymph nodes). I have been considered a possible candidate for T-Vec, and participated in a trial that used intralesional injections. I think this one point needs clarification for those considering the treatment option. Am I wrong?
Gary
-
- July 29, 2016 at 4:15 am
Thanks so much for this post. Very informative. So glad you got some further information and support at Duke.
I dont know much about the Tvec but when we asked about it for my mom the Dr did not think it was a good idea as she has the melanoma in 2 small spots in the liver. He mentioned being nervous about how the herpes would react with the liver tissue. I am guessing he was referring to injecting in liver itself.. And that is one of the top concerns from a where is melanoma perspective.
Also.. not sure if you remember but I posted about a possible melanoma popping up on my moms arm.. hard and purple like.. we asked the dermatologsit about it and she said not necessary to remove and they would monitor it because it can give clues to if the treatment is working.. not always.. but its something they consider. This may be different from what you experienced but thought would mention.
Hopefully the yervoy is the key! But so glad you learned about other options.
All the best!!
-
- July 29, 2016 at 4:15 am
Thanks so much for this post. Very informative. So glad you got some further information and support at Duke.
I dont know much about the Tvec but when we asked about it for my mom the Dr did not think it was a good idea as she has the melanoma in 2 small spots in the liver. He mentioned being nervous about how the herpes would react with the liver tissue. I am guessing he was referring to injecting in liver itself.. And that is one of the top concerns from a where is melanoma perspective.
Also.. not sure if you remember but I posted about a possible melanoma popping up on my moms arm.. hard and purple like.. we asked the dermatologsit about it and she said not necessary to remove and they would monitor it because it can give clues to if the treatment is working.. not always.. but its something they consider. This may be different from what you experienced but thought would mention.
Hopefully the yervoy is the key! But so glad you learned about other options.
All the best!!
-
- July 29, 2016 at 4:15 am
Thanks so much for this post. Very informative. So glad you got some further information and support at Duke.
I dont know much about the Tvec but when we asked about it for my mom the Dr did not think it was a good idea as she has the melanoma in 2 small spots in the liver. He mentioned being nervous about how the herpes would react with the liver tissue. I am guessing he was referring to injecting in liver itself.. And that is one of the top concerns from a where is melanoma perspective.
Also.. not sure if you remember but I posted about a possible melanoma popping up on my moms arm.. hard and purple like.. we asked the dermatologsit about it and she said not necessary to remove and they would monitor it because it can give clues to if the treatment is working.. not always.. but its something they consider. This may be different from what you experienced but thought would mention.
Hopefully the yervoy is the key! But so glad you learned about other options.
All the best!!
-
- July 29, 2016 at 2:12 pm
It was good to get straight answers even if I did not hear exactly what I wanted to hear. At least I have some direction on what the plan is. I do remember your mom's experience with her sub q's and the questions you had with what the heck, just like me. I worried a month without any real answers until this week.
The removal question etc. is exactly what I faced as well. Has your moms sub q's changed any? I am hoping that within the next few weeks after my last yervoy treatment that mine will disapear. If I had gone to Salamas (mel DOC) in the beginning, I would have saved myself a lot of sleepless nights over those nodules. I do thank God every day that I haven't experienced the severe side effects of the max dose of yervoy. I will add, had I known that the odds of me being a responder were not that much higher with the 10 mg dose, I do not think I would have taken the risk but would have done the 3 mg with much less chance of severe toxicity than the 10 mg. But that being said, time to watch and wait. I was beyond lucky (so far) with the side effects. The odds Dr. Salamas gave me were what she has seen and not necessarily public studies. She prefaced everything by saying, "in my experience".
As far as T-vec, or any other topic I put the answers to, I was really trying to pass on as much info as I could to maybe give someone like me a little help at a start point for their journey. Mainly, I want to stress the mistakes I made in this journey so maybe one person can benefit. My knowledge beyond what I was told is limited. I do know that the uncertainty whether it is you or a loved one is shared by anyone affected by this disease and this forum is a God send to me. You feel an attachment to everyone posting, replying or taking time to send some encouragement.
-
- July 29, 2016 at 2:12 pm
It was good to get straight answers even if I did not hear exactly what I wanted to hear. At least I have some direction on what the plan is. I do remember your mom's experience with her sub q's and the questions you had with what the heck, just like me. I worried a month without any real answers until this week.
The removal question etc. is exactly what I faced as well. Has your moms sub q's changed any? I am hoping that within the next few weeks after my last yervoy treatment that mine will disapear. If I had gone to Salamas (mel DOC) in the beginning, I would have saved myself a lot of sleepless nights over those nodules. I do thank God every day that I haven't experienced the severe side effects of the max dose of yervoy. I will add, had I known that the odds of me being a responder were not that much higher with the 10 mg dose, I do not think I would have taken the risk but would have done the 3 mg with much less chance of severe toxicity than the 10 mg. But that being said, time to watch and wait. I was beyond lucky (so far) with the side effects. The odds Dr. Salamas gave me were what she has seen and not necessarily public studies. She prefaced everything by saying, "in my experience".
As far as T-vec, or any other topic I put the answers to, I was really trying to pass on as much info as I could to maybe give someone like me a little help at a start point for their journey. Mainly, I want to stress the mistakes I made in this journey so maybe one person can benefit. My knowledge beyond what I was told is limited. I do know that the uncertainty whether it is you or a loved one is shared by anyone affected by this disease and this forum is a God send to me. You feel an attachment to everyone posting, replying or taking time to send some encouragement.
-
- July 29, 2016 at 2:12 pm
It was good to get straight answers even if I did not hear exactly what I wanted to hear. At least I have some direction on what the plan is. I do remember your mom's experience with her sub q's and the questions you had with what the heck, just like me. I worried a month without any real answers until this week.
The removal question etc. is exactly what I faced as well. Has your moms sub q's changed any? I am hoping that within the next few weeks after my last yervoy treatment that mine will disapear. If I had gone to Salamas (mel DOC) in the beginning, I would have saved myself a lot of sleepless nights over those nodules. I do thank God every day that I haven't experienced the severe side effects of the max dose of yervoy. I will add, had I known that the odds of me being a responder were not that much higher with the 10 mg dose, I do not think I would have taken the risk but would have done the 3 mg with much less chance of severe toxicity than the 10 mg. But that being said, time to watch and wait. I was beyond lucky (so far) with the side effects. The odds Dr. Salamas gave me were what she has seen and not necessarily public studies. She prefaced everything by saying, "in my experience".
As far as T-vec, or any other topic I put the answers to, I was really trying to pass on as much info as I could to maybe give someone like me a little help at a start point for their journey. Mainly, I want to stress the mistakes I made in this journey so maybe one person can benefit. My knowledge beyond what I was told is limited. I do know that the uncertainty whether it is you or a loved one is shared by anyone affected by this disease and this forum is a God send to me. You feel an attachment to everyone posting, replying or taking time to send some encouragement.
-
- August 3, 2016 at 4:06 am
Here's what I have on t-vec out of ASCO as well as links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-t-vec-talimogene.html
I wish you well. Celeste
-
- August 3, 2016 at 4:06 am
Here's what I have on t-vec out of ASCO as well as links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-t-vec-talimogene.html
I wish you well. Celeste
-
- August 3, 2016 at 4:06 am
Here's what I have on t-vec out of ASCO as well as links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-t-vec-talimogene.html
I wish you well. Celeste
-
- August 7, 2016 at 2:08 am
-
- August 7, 2016 at 2:08 am
-
- August 7, 2016 at 2:08 am
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.