› Forums › Cutaneous Melanoma Community › Just returning from MDA-help
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janandben.
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- May 21, 2014 at 9:58 pm
Hello all,I have posted here before and really appreciate all of the response and advice we have received..I am posting again because I feel like we are starting to get a grasp (if that is possible) on this crazy melanoma world. When you are thrown in.. It takes time to grasp all of the terminology, and take an understanding of our own unique case as we have come to see–every case is different. My husband has asked me to repost his questions specifically so if they are redundant please bare with me:Overview of our diagnosis: we first noticed a cyst like growth on the clavicle area , base of the neck, in September 2013. It was thought to be a sebaceous cyst by our plastic surgeon. It was removed in December 2013. It was a 9mm amelonotic Nodular melanoma located in the dermis which path thought to be a metastasis. Of course, we went searching for a primary site. No other melanoma could be found. In December 2013 we had a wide local excision of this area with sentinel node biopsy (sentinel node was found to be on the opposite side of the tumor). At that time the margins were clear as was the lymph node. PET and CT scans showed no evidence of disease. We followed up in April 2014, (3 month check) with another negative CT scan but noticed that a spot had changed on the edge of the WLE scar. After a dermatological biopsy, the spot was found to be the same. Melanoma in the dermis and metastasis. To date no primary has been found. The biopsy from the 2nd spot was read with clean margins. After reaching out to the melanoma international forum, we were advised to go to a center that specializes in melanoma. We spent May 13-20th at M.D. Anderson. The results of ultrasound, CT, PET, MRI show no evidence of metastasis. They have recommended another wide local excision of the area with possible skin graft. And perhaps local radiation depending on the path findings. (MDA wanted our original slides and tumor for their own path to review) We are BRAF positive. The general consensus is that the primary was probably attacked by his own immune system and likely won't be found. We understood the medical oncologist's reasoning that because the 2 tumors were found in the dermal region-it would have traveled from another source. Because of the size of the Nodular tumor and the recent recurrence we have been staged as a 3b or 3c. (Stage 3, tx, n2c) or perhaps a stage IV if the primary site was distant and that we do not know. We all agree on additional surgery with or without radiation. It is our understanding that we have 3 systemic options: ECOG 1609 (interferon vs ipi) or the combi-ad (BRAF inhibitor) trials or watch and wait.Questions for the forum: (please excuse if we are asking the same question, as we are trying to still understand all of this)1. Would doing Yervoy (ipi) and waiting on the BRAF inhibitor make sense at this time: our reason for asking is that we are getting differing opinions. One says do the BRAF inhibitor because the success rate is higher. Other says that it is only a temporary fix and we should save this for later should another tumor show up? (We understood that the melanoma becomes resistent at some point to the BRAF inhibitor) Please clarify if we have misunderstood..2. This seems like a crazy question– but does the watch and wait make sense? Our doctor said that there could be a chance that we totally cancer free.3. We are hesitant about doing any radiation because of the potential complications and the fact that it doesn't really effect survival rate. And that doing radiation may preempt us from future clinical trials.. Thought?4. Does participating in the ECOG-1609 or the Combi-Ad effect our ability to do the anti PD-1 extended trial?5. We have heard that preliminary results on the ECOG study should be released on June 2 at the big cancer meeting in Chicago. So, what does that mean to us? Would we be able to go to our insurance company with a case (pending good results from study) and get ipi without going into a trial?6. Since we have been stages somewhere between a stage 3 and a stage IV — is there anything that we should try without going into a trial?7. Is there any data on the known side effects of ipi? And, any data on whether ipi has the potential for melanoma resistance if taken too early?8. Does taking Yervoy eliminate us from MK3475 EAP?9. Do we qualify now for MK 3475-EAP? If so, who is offering the trial?10. Is there any of the other treatments that would keep us out of MK-3475 EAP?11. We have read that some people leave melanomas in place to monitor the success of drug therapy. Can you explain?Thank you ALL for your support and advice. It makes a huge difference.JennyjennyedwardsPosts: 4Joined: 01 May 2014 14:33Top
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- May 21, 2014 at 11:06 pm
Hi Jenny,
I also found it took awhile to get a handle on all the terminology and drugs and procedures for melanoma. This is normal. Besides scaring the bajeebies out of you, the melanoma world has a whole new language and culture to learn. It's no wonder and to be expected that it take awhile for you to get your footing. And even though it's changing for the better, everything is in flux, so what was "normal a few years ago" is no longer the norm. So it's a steep learning curve.
But you've got great questions and this is a great place for your questions. So ASK AWAY!!! Many here have much more info and knowledge then I do but I'll give your questions a shot:
1 I'm told that taking a BRAF inhibitor before Yervoy doesn't make sense unless you have a large tumor load and need it to knock it down to a more reasonable size. My understanding is that the Braf inhibitor works for awhile but then it ticks off melanoma and then mel comes back big, fat and ugly.
2. In a strange bizarre kind of way, watch and wait can makes sense if you're NED. If you are "no evidence of disease" (NED) you may not have mel. And taking the drugs to kill what isn't there isn't cheap (physically or financially) These drugs have real side effects and will impact your life. Watching and waiting isn't doing nothing. It's knowing your body, what's normal and what's changing, or not. It's a legitimate approach and many here have and are doing it.
3. No idea about radiation. It was my understanding that radiation didn't really work in mel, but that it could be used for pain control. Sorry I'm no help here.
4. No idea, sorry. The trial nurse is probably the best to answer this question.
5. I'm not sure what the results that will come out in early June will mean, but I got Yervoy without going into a trial, but it is (as I understand it) Yervoy is only approved for stage 3 & 4 with unresectable mets.
6. You're NED, yes? There's many ways to answer your question and you'll find a wide range of answers to your question on this board. Whatever you decide to do, be working with a top melanoma specialist, know yourself, make your decision and don't look back, and watch for change. Keep asking.
7. The side effects from Yervoy are well known. Search the board or Check out http://www.yervoy.com/patient/side-effects.aspx?TC=47783&utm_source=google&utm_medium=cpc&utm_campaign=brandeddecision&utm_term=yervoysideeffects&utm_content=brandeddipisideeffects_textad_Information_text_tc47783
8 & 9 & 10 I don't think you currently qualify for MK-3475 EAP. It's my understanding that you have to have failed Yervoy and a Braf inhibitor (if Braf positive) for the MK-3475 EAP.
11. Yes, I have left most of my intransit mets in place. I had 2 taken out to be biopsied just to be sure they were mel. I'm currently on Yervoy, and the thinking was that 1) If I have them removed then I am NED, but then don't qualify for Ipi/Yervoy, and since ipi gives me a chance of a cure, Ipi would be a good option. 2) They're unresectable, in that while we could scoop out the ones that pop up, it would be a bit like playing whack-a-mole trying to get all of them as they pop up. 3) And this is the most important to me: If I have them in, my doc and I can see if Ipi is working. Because I left them there we have an indicator of progress! I've finished all 4 treatments and am now seeing some of them shrink away. So I know I am at least a partial responder.
Blessings to you and your husband as you try to navigate this strange path,
Julie
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- May 21, 2014 at 11:06 pm
Hi Jenny,
I also found it took awhile to get a handle on all the terminology and drugs and procedures for melanoma. This is normal. Besides scaring the bajeebies out of you, the melanoma world has a whole new language and culture to learn. It's no wonder and to be expected that it take awhile for you to get your footing. And even though it's changing for the better, everything is in flux, so what was "normal a few years ago" is no longer the norm. So it's a steep learning curve.
But you've got great questions and this is a great place for your questions. So ASK AWAY!!! Many here have much more info and knowledge then I do but I'll give your questions a shot:
1 I'm told that taking a BRAF inhibitor before Yervoy doesn't make sense unless you have a large tumor load and need it to knock it down to a more reasonable size. My understanding is that the Braf inhibitor works for awhile but then it ticks off melanoma and then mel comes back big, fat and ugly.
2. In a strange bizarre kind of way, watch and wait can makes sense if you're NED. If you are "no evidence of disease" (NED) you may not have mel. And taking the drugs to kill what isn't there isn't cheap (physically or financially) These drugs have real side effects and will impact your life. Watching and waiting isn't doing nothing. It's knowing your body, what's normal and what's changing, or not. It's a legitimate approach and many here have and are doing it.
3. No idea about radiation. It was my understanding that radiation didn't really work in mel, but that it could be used for pain control. Sorry I'm no help here.
4. No idea, sorry. The trial nurse is probably the best to answer this question.
5. I'm not sure what the results that will come out in early June will mean, but I got Yervoy without going into a trial, but it is (as I understand it) Yervoy is only approved for stage 3 & 4 with unresectable mets.
6. You're NED, yes? There's many ways to answer your question and you'll find a wide range of answers to your question on this board. Whatever you decide to do, be working with a top melanoma specialist, know yourself, make your decision and don't look back, and watch for change. Keep asking.
7. The side effects from Yervoy are well known. Search the board or Check out http://www.yervoy.com/patient/side-effects.aspx?TC=47783&utm_source=google&utm_medium=cpc&utm_campaign=brandeddecision&utm_term=yervoysideeffects&utm_content=brandeddipisideeffects_textad_Information_text_tc47783
8 & 9 & 10 I don't think you currently qualify for MK-3475 EAP. It's my understanding that you have to have failed Yervoy and a Braf inhibitor (if Braf positive) for the MK-3475 EAP.
11. Yes, I have left most of my intransit mets in place. I had 2 taken out to be biopsied just to be sure they were mel. I'm currently on Yervoy, and the thinking was that 1) If I have them removed then I am NED, but then don't qualify for Ipi/Yervoy, and since ipi gives me a chance of a cure, Ipi would be a good option. 2) They're unresectable, in that while we could scoop out the ones that pop up, it would be a bit like playing whack-a-mole trying to get all of them as they pop up. 3) And this is the most important to me: If I have them in, my doc and I can see if Ipi is working. Because I left them there we have an indicator of progress! I've finished all 4 treatments and am now seeing some of them shrink away. So I know I am at least a partial responder.
Blessings to you and your husband as you try to navigate this strange path,
Julie
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- May 21, 2014 at 11:06 pm
Hi Jenny,
I also found it took awhile to get a handle on all the terminology and drugs and procedures for melanoma. This is normal. Besides scaring the bajeebies out of you, the melanoma world has a whole new language and culture to learn. It's no wonder and to be expected that it take awhile for you to get your footing. And even though it's changing for the better, everything is in flux, so what was "normal a few years ago" is no longer the norm. So it's a steep learning curve.
But you've got great questions and this is a great place for your questions. So ASK AWAY!!! Many here have much more info and knowledge then I do but I'll give your questions a shot:
1 I'm told that taking a BRAF inhibitor before Yervoy doesn't make sense unless you have a large tumor load and need it to knock it down to a more reasonable size. My understanding is that the Braf inhibitor works for awhile but then it ticks off melanoma and then mel comes back big, fat and ugly.
2. In a strange bizarre kind of way, watch and wait can makes sense if you're NED. If you are "no evidence of disease" (NED) you may not have mel. And taking the drugs to kill what isn't there isn't cheap (physically or financially) These drugs have real side effects and will impact your life. Watching and waiting isn't doing nothing. It's knowing your body, what's normal and what's changing, or not. It's a legitimate approach and many here have and are doing it.
3. No idea about radiation. It was my understanding that radiation didn't really work in mel, but that it could be used for pain control. Sorry I'm no help here.
4. No idea, sorry. The trial nurse is probably the best to answer this question.
5. I'm not sure what the results that will come out in early June will mean, but I got Yervoy without going into a trial, but it is (as I understand it) Yervoy is only approved for stage 3 & 4 with unresectable mets.
6. You're NED, yes? There's many ways to answer your question and you'll find a wide range of answers to your question on this board. Whatever you decide to do, be working with a top melanoma specialist, know yourself, make your decision and don't look back, and watch for change. Keep asking.
7. The side effects from Yervoy are well known. Search the board or Check out http://www.yervoy.com/patient/side-effects.aspx?TC=47783&utm_source=google&utm_medium=cpc&utm_campaign=brandeddecision&utm_term=yervoysideeffects&utm_content=brandeddipisideeffects_textad_Information_text_tc47783
8 & 9 & 10 I don't think you currently qualify for MK-3475 EAP. It's my understanding that you have to have failed Yervoy and a Braf inhibitor (if Braf positive) for the MK-3475 EAP.
11. Yes, I have left most of my intransit mets in place. I had 2 taken out to be biopsied just to be sure they were mel. I'm currently on Yervoy, and the thinking was that 1) If I have them removed then I am NED, but then don't qualify for Ipi/Yervoy, and since ipi gives me a chance of a cure, Ipi would be a good option. 2) They're unresectable, in that while we could scoop out the ones that pop up, it would be a bit like playing whack-a-mole trying to get all of them as they pop up. 3) And this is the most important to me: If I have them in, my doc and I can see if Ipi is working. Because I left them there we have an indicator of progress! I've finished all 4 treatments and am now seeing some of them shrink away. So I know I am at least a partial responder.
Blessings to you and your husband as you try to navigate this strange path,
Julie
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- May 21, 2014 at 11:49 pm
Jenny,
There are many similarities between your case and ours. My husband had a 9+mm cyst removed from the top of his head, sent for routine biopsy, came back from pathologist as metastatic melanoma. We consulted with three melanoma specialists at different Centers of Excellence, and they all agreed on one thing: we probably will never know for sure where it started. But they all believe that if there was a skin lesion (as opposed to nodular melanoma starting in lower layers of skin), it regressed as his immune system fought it off. He also had clear margins after the wide local excision, and always clear PET/CT/MRI scans. So, the first part is very similar …
We are lucky that it hasn't shown up again, but from what I understand, the most common recurrence is along the margins of the first WLE or somewhere very close (a "satellite" lesion). Your case seems to be following that norm.
We opted to participate in a clinical trial of a GVAX vaccine, and since that ended 15 months ago, we are on "watch and wait." We see the dermatologist every three months for a complete skin exam, and the oncologist every four months for a complete check-up. CT scans (neck down) every five months.
Before we decided on the clinical trial we saw three specialists – one locally in D.C., one at Johns Hopkins, and one at University of Pennsylvania. I think having three experts to consult with helped us tremendously while we were making those early decisions.
Our follow-ups are with the Hopkins melanoma specialist who conducted the clinical trial. We will continue to see him, and we are reassured by the thorough exams and his willingness to answer every question and tend to every detail. We feel that because there is no evidence of disease, using one of the other therapies isn't warranted.
The follow-up excision with wide margins, by a plastic surgeon, that was suggested to you sounds like standard treatment. Our plastic surgeon also was very reassuring. I hope you find someone as good and who has great patient relations.
Feel free to contact me off-list if you need more support. This is such a difficult situation to get used to. I'll help if I can.
Best —
Hazel
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- May 21, 2014 at 11:49 pm
Jenny,
There are many similarities between your case and ours. My husband had a 9+mm cyst removed from the top of his head, sent for routine biopsy, came back from pathologist as metastatic melanoma. We consulted with three melanoma specialists at different Centers of Excellence, and they all agreed on one thing: we probably will never know for sure where it started. But they all believe that if there was a skin lesion (as opposed to nodular melanoma starting in lower layers of skin), it regressed as his immune system fought it off. He also had clear margins after the wide local excision, and always clear PET/CT/MRI scans. So, the first part is very similar …
We are lucky that it hasn't shown up again, but from what I understand, the most common recurrence is along the margins of the first WLE or somewhere very close (a "satellite" lesion). Your case seems to be following that norm.
We opted to participate in a clinical trial of a GVAX vaccine, and since that ended 15 months ago, we are on "watch and wait." We see the dermatologist every three months for a complete skin exam, and the oncologist every four months for a complete check-up. CT scans (neck down) every five months.
Before we decided on the clinical trial we saw three specialists – one locally in D.C., one at Johns Hopkins, and one at University of Pennsylvania. I think having three experts to consult with helped us tremendously while we were making those early decisions.
Our follow-ups are with the Hopkins melanoma specialist who conducted the clinical trial. We will continue to see him, and we are reassured by the thorough exams and his willingness to answer every question and tend to every detail. We feel that because there is no evidence of disease, using one of the other therapies isn't warranted.
The follow-up excision with wide margins, by a plastic surgeon, that was suggested to you sounds like standard treatment. Our plastic surgeon also was very reassuring. I hope you find someone as good and who has great patient relations.
Feel free to contact me off-list if you need more support. This is such a difficult situation to get used to. I'll help if I can.
Best —
Hazel
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- May 21, 2014 at 11:49 pm
Jenny,
There are many similarities between your case and ours. My husband had a 9+mm cyst removed from the top of his head, sent for routine biopsy, came back from pathologist as metastatic melanoma. We consulted with three melanoma specialists at different Centers of Excellence, and they all agreed on one thing: we probably will never know for sure where it started. But they all believe that if there was a skin lesion (as opposed to nodular melanoma starting in lower layers of skin), it regressed as his immune system fought it off. He also had clear margins after the wide local excision, and always clear PET/CT/MRI scans. So, the first part is very similar …
We are lucky that it hasn't shown up again, but from what I understand, the most common recurrence is along the margins of the first WLE or somewhere very close (a "satellite" lesion). Your case seems to be following that norm.
We opted to participate in a clinical trial of a GVAX vaccine, and since that ended 15 months ago, we are on "watch and wait." We see the dermatologist every three months for a complete skin exam, and the oncologist every four months for a complete check-up. CT scans (neck down) every five months.
Before we decided on the clinical trial we saw three specialists – one locally in D.C., one at Johns Hopkins, and one at University of Pennsylvania. I think having three experts to consult with helped us tremendously while we were making those early decisions.
Our follow-ups are with the Hopkins melanoma specialist who conducted the clinical trial. We will continue to see him, and we are reassured by the thorough exams and his willingness to answer every question and tend to every detail. We feel that because there is no evidence of disease, using one of the other therapies isn't warranted.
The follow-up excision with wide margins, by a plastic surgeon, that was suggested to you sounds like standard treatment. Our plastic surgeon also was very reassuring. I hope you find someone as good and who has great patient relations.
Feel free to contact me off-list if you need more support. This is such a difficult situation to get used to. I'll help if I can.
Best —
Hazel
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- May 22, 2014 at 1:48 am
My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor. You have to be NED and you get both of the drugs simultaneously. It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case). The trial is run by Dr. Jeffrey Weber.
I would hold off on the braf drugs for now. Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.
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- May 22, 2014 at 1:57 am
Jenny,
As I read your post I thought to myself, "what about a adjuvant trial?" If I was NED in search of a trial I could not imagine a better one that this Ipi/Nivo trial and especially under Dr. Weber. I have consulted with him a couple times and he is awesome.
Brian
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- May 22, 2014 at 1:57 am
Jenny,
As I read your post I thought to myself, "what about a adjuvant trial?" If I was NED in search of a trial I could not imagine a better one that this Ipi/Nivo trial and especially under Dr. Weber. I have consulted with him a couple times and he is awesome.
Brian
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- May 22, 2014 at 1:57 am
Jenny,
As I read your post I thought to myself, "what about a adjuvant trial?" If I was NED in search of a trial I could not imagine a better one that this Ipi/Nivo trial and especially under Dr. Weber. I have consulted with him a couple times and he is awesome.
Brian
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- May 22, 2014 at 12:02 pm
My trial was Nivo alone and the blog tells the story…here are two entries re side effects:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Best, C
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- May 22, 2014 at 12:02 pm
My trial was Nivo alone and the blog tells the story…here are two entries re side effects:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Best, C
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- May 22, 2014 at 12:02 pm
My trial was Nivo alone and the blog tells the story…here are two entries re side effects:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Best, C
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- May 22, 2014 at 2:39 pm
My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.
His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough. He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past. If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years. We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home. We love Moffitt and Dr. Weber.
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- May 22, 2014 at 2:39 pm
My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.
His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough. He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past. If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years. We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home. We love Moffitt and Dr. Weber.
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- May 22, 2014 at 2:39 pm
My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.
His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough. He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past. If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years. We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home. We love Moffitt and Dr. Weber.
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- May 22, 2014 at 12:06 pm
This entry gives a breakdown of some of the early reports re the ipi/nivo combo:
More has been learned since these early studies….and from what is being put out about the later/ongoing studies…side effects have not been as bad as were originally feared with the combo….as best as I can tell. More information may come out at ASCO.
Yours, c
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- May 22, 2014 at 12:06 pm
This entry gives a breakdown of some of the early reports re the ipi/nivo combo:
More has been learned since these early studies….and from what is being put out about the later/ongoing studies…side effects have not been as bad as were originally feared with the combo….as best as I can tell. More information may come out at ASCO.
Yours, c
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- May 22, 2014 at 12:06 pm
This entry gives a breakdown of some of the early reports re the ipi/nivo combo:
More has been learned since these early studies….and from what is being put out about the later/ongoing studies…side effects have not been as bad as were originally feared with the combo….as best as I can tell. More information may come out at ASCO.
Yours, c
-
- May 22, 2014 at 1:48 am
My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor. You have to be NED and you get both of the drugs simultaneously. It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case). The trial is run by Dr. Jeffrey Weber.
I would hold off on the braf drugs for now. Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.
-
- May 22, 2014 at 1:48 am
My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor. You have to be NED and you get both of the drugs simultaneously. It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case). The trial is run by Dr. Jeffrey Weber.
I would hold off on the braf drugs for now. Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.
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Tagged: cutaneous melanoma
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