› Forums › General Melanoma Community › yervoy worked for 2 months, then failed…Now what?
- This topic has 12 replies, 5 voices, and was last updated 14 years, 5 months ago by
JerryfromFauq.
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- August 30, 2011 at 10:23 am
My husband was dx with stage 4 in January. 2 surgeries, failed at Gleevec (he's c-kit positive), started Yervoy in May. Completed his 4th cycle on July 5. A scan showed the 2 tumors were gone, but one area of concern in his stomach. He had a scan last week and the results yesterday showed a tumor in his belly and one in his neck. The dr.
My husband was dx with stage 4 in January. 2 surgeries, failed at Gleevec (he's c-kit positive), started Yervoy in May. Completed his 4th cycle on July 5. A scan showed the 2 tumors were gone, but one area of concern in his stomach. He had a scan last week and the results yesterday showed a tumor in his belly and one in his neck. The dr. thinks it's new disease. Now what?? He is braf positive, so we know he can use Zelboraf, but we know that just buys a few months at best. What other trials are out there that look promising? Help–he's only 38 and we have 3 little boys at home who need their Dad!
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- August 30, 2011 at 11:36 am
Welcome to our forum. I encourage you to fill in the important details on the profile
page for your husband, as this will make it easier for us to help you.It is not unusual for melanoma therapies to stop working. Therefore, the current
approach is to try one treatment while researching the next approach to take. Is your
husband seeing an oncologist who is experienced in treating melanoma patients?The trials and treatments that are available depend quiet a bit on your location.
However, I feel that the US has the most comprehensive range of options at the moment.Here is a recent thread with more info on treatments:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/treatment-and-nci-has-anyone-gone-thruHope this helps.
Frank from Australia
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- August 30, 2011 at 11:36 am
Welcome to our forum. I encourage you to fill in the important details on the profile
page for your husband, as this will make it easier for us to help you.It is not unusual for melanoma therapies to stop working. Therefore, the current
approach is to try one treatment while researching the next approach to take. Is your
husband seeing an oncologist who is experienced in treating melanoma patients?The trials and treatments that are available depend quiet a bit on your location.
However, I feel that the US has the most comprehensive range of options at the moment.Here is a recent thread with more info on treatments:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/treatment-and-nci-has-anyone-gone-thruHope this helps.
Frank from Australia
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- August 30, 2011 at 12:43 pm
Hello,
Could you update your profile, it helps us help you more.
I think you are just across the water from me, Wildwood, NJ? I'm in Georgetown, DE (1/2 hour from the Cape May/Lewes ferry).
I did ipi, had little/no response. I began BRAF 2 weeks after ipi and had an almost instantaneous response! My profile goes into more detail.
All that to say, do not give up hope! I have been off of BRAF for a week due to a rash & extremely low white count, and I'm still doing very well. I hope to re-start at a lower dose this week. I was only on BRAF for 2 weeks, and saw results within 48 hours **in my neck**.
Blessings to you and your husband and boys, there is always another treatment option. Just keep asking, work with your doctors, and never give up hope.
TracyLee
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- August 30, 2011 at 12:43 pm
Hello,
Could you update your profile, it helps us help you more.
I think you are just across the water from me, Wildwood, NJ? I'm in Georgetown, DE (1/2 hour from the Cape May/Lewes ferry).
I did ipi, had little/no response. I began BRAF 2 weeks after ipi and had an almost instantaneous response! My profile goes into more detail.
All that to say, do not give up hope! I have been off of BRAF for a week due to a rash & extremely low white count, and I'm still doing very well. I hope to re-start at a lower dose this week. I was only on BRAF for 2 weeks, and saw results within 48 hours **in my neck**.
Blessings to you and your husband and boys, there is always another treatment option. Just keep asking, work with your doctors, and never give up hope.
TracyLee
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- August 30, 2011 at 1:00 pm
Hi
So sorry you had to come to this forum, but very glad you are seeking information. Don’t be too quick to dismiss Zelboraf. I have been on it since Mar 2010 as part of BRIM2 (details in my profile). While some people did not experience long benefits, others have. Continue to gather information so you can work with your Onc for what you will feel is best treatment.
Dick -
- August 30, 2011 at 1:00 pm
Hi
So sorry you had to come to this forum, but very glad you are seeking information. Don’t be too quick to dismiss Zelboraf. I have been on it since Mar 2010 as part of BRIM2 (details in my profile). While some people did not experience long benefits, others have. Continue to gather information so you can work with your Onc for what you will feel is best treatment.
Dick -
- August 30, 2011 at 9:50 pm
One thing in your post greatly confuses me.
Every report and Oncologist I have seen do any write ups has stated that one cannot be BRAF positive and C-kit positive. That they are mutually exclusive oncoproteins and DNA mutations. I would like to get Information on who performed the tests and what exact tests were performed for each type and which mutations were found for each type.
Dick made the point I was going on for this post.
The negative side of Zelboraf is that it:
1. Only works on some BRAF's.
2. That it stops remission for around 6 months in about half the people it started working on.
As Dick illustrates, WHAT about the other half of the BRAF V600E people that Zelboraf did start workiing on? Time will only tell what the longevity will be for each individual.
There is also disscussion about that Ipi (Yervoy) might help prime ones immune system so that IL-2 can jump in and be more effextive. (See Jimmy B's (James M. Breitfeller) case and research.)
There also seems to be a possibility that PD-1 drugs (being developed) can help both BRAF and C-Kit patients.
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- August 30, 2011 at 9:50 pm
One thing in your post greatly confuses me.
Every report and Oncologist I have seen do any write ups has stated that one cannot be BRAF positive and C-kit positive. That they are mutually exclusive oncoproteins and DNA mutations. I would like to get Information on who performed the tests and what exact tests were performed for each type and which mutations were found for each type.
Dick made the point I was going on for this post.
The negative side of Zelboraf is that it:
1. Only works on some BRAF's.
2. That it stops remission for around 6 months in about half the people it started working on.
As Dick illustrates, WHAT about the other half of the BRAF V600E people that Zelboraf did start workiing on? Time will only tell what the longevity will be for each individual.
There is also disscussion about that Ipi (Yervoy) might help prime ones immune system so that IL-2 can jump in and be more effextive. (See Jimmy B's (James M. Breitfeller) case and research.)
There also seems to be a possibility that PD-1 drugs (being developed) can help both BRAF and C-Kit patients.
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- August 30, 2011 at 11:49 pm
I haven't read anything about not being able to be c-kit and Braf positive (although I haven't looked for that info). The hospital lab did the original pathology on the 1st tumor that said CD117 (c-kit) is immunoreactive. The doctor said that meant c-kit positive and put him on Gleevec, but maybe since it didn't work, it wasn't right??
The BRaf was sent to a lab in California–it said BRAF mutation detected, mutation V600E. The doctor said that meant he was BRAF positive. Of the two labs, I would trust the lab in California more–it specializes in these tests and at our hospital, my husband is currently the only patient with this advanced stage of metastatic melanoma.
I guess now I'm second guessing the Dr.–he is not a melanoma specialist, but we've consulted with a specialist nearby, who has told us which tests to ask for and what medicines to use, but he has never seen the actual test results. We're going to see him next week and ask his opinion on all of this.
It's interesting you mentioned IL-2, because we stumbled back onto that yesterday in some of our research. I thought it didn't really work, and had nasty side effects, but we'll definately give it a second look, wondering if it might work after the Yervoy.
The melanoma specialist is running several trials right now, so at this point, our thought is to enroll in one of his trials, then if it doesn't work, use the Zelboraf. Although we will question him about possibly doing IL-2. It's also good to know that on some people the BRAF drugs last longer than just a few months. Our doctor also thinks that he might be able to get the insurance company to cover a "booster dose" of Yervoy in 6 months, since it did work for a bit of time and get rid of 2 tumors).
This is all so hard–not to mention, in addition to all the research we're trying to do, we're both trying to continue working (to pay all the bills!) and raise our 3 young children.
I appreciate everyone's suggestions–it's great to hear the ideas–the dr.'s don't always mention all the options.
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- August 30, 2011 at 11:49 pm
I haven't read anything about not being able to be c-kit and Braf positive (although I haven't looked for that info). The hospital lab did the original pathology on the 1st tumor that said CD117 (c-kit) is immunoreactive. The doctor said that meant c-kit positive and put him on Gleevec, but maybe since it didn't work, it wasn't right??
The BRaf was sent to a lab in California–it said BRAF mutation detected, mutation V600E. The doctor said that meant he was BRAF positive. Of the two labs, I would trust the lab in California more–it specializes in these tests and at our hospital, my husband is currently the only patient with this advanced stage of metastatic melanoma.
I guess now I'm second guessing the Dr.–he is not a melanoma specialist, but we've consulted with a specialist nearby, who has told us which tests to ask for and what medicines to use, but he has never seen the actual test results. We're going to see him next week and ask his opinion on all of this.
It's interesting you mentioned IL-2, because we stumbled back onto that yesterday in some of our research. I thought it didn't really work, and had nasty side effects, but we'll definately give it a second look, wondering if it might work after the Yervoy.
The melanoma specialist is running several trials right now, so at this point, our thought is to enroll in one of his trials, then if it doesn't work, use the Zelboraf. Although we will question him about possibly doing IL-2. It's also good to know that on some people the BRAF drugs last longer than just a few months. Our doctor also thinks that he might be able to get the insurance company to cover a "booster dose" of Yervoy in 6 months, since it did work for a bit of time and get rid of 2 tumors).
This is all so hard–not to mention, in addition to all the research we're trying to do, we're both trying to continue working (to pay all the bills!) and raise our 3 young children.
I appreciate everyone's suggestions–it's great to hear the ideas–the dr.'s don't always mention all the options.
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- August 31, 2011 at 6:15 am
IL-2 is the only treatment other than surgery that has a 5 to 6% long term (Esentially a cure) rate. I know people that have had it as their only stage IV treatment and have been out living life for the past 20 years now. Look up DebbieVA (http://www.caringbridge.org/visit/debbiehennessy) and Jane from Maine in the archives. They have been NED (No Evidence of Disease) detected in about five years after IL-2. Nothing else has yet been proven to have an across the board success rate of the long term cure and few new treatments have even exceeded the 20% response rate of across the board patients treated with il-2. While IL-2 is rough for the short term, The negative side effets are usually short term and the elimination of finding melanoma cells in ones body can be forever. Both ipi and il-2 seem to often help improve the action of other chemo treatments. Jimmy B, (James M. Breitfeller) medical researcher has looked deeply into what he believes is the technicals details of why, after ipi "failed" and he tried IL-2, he has been NED.
http://www.box.net/shared/kjgr6dkztj
It explains the immune system and scientifically why my treatment worked. It has a references (Research papers) at the end of it. I also wrote another small piece called
"The Making of an Immune Response by Combinatorial Therapy Using Anti-CTLA-4 Blockade and Interleukin-2" It is an add on to the other paper.https://www.box.net/shared/n0xcdimy5d
There are other papers also that pertain to our topic Melanoma/treatment at http://melanomamissionary.blogspot.com/ Melanoma Missionary.
There is a Shared file section at the website with some of reseach papers that I thought might be informative to patients, caregivers, oncologists and researchers. The papers I wrote, I tried to bring the language down to layman terms.
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BRAF—-c-Kit
jcp.bmj.com/content/62/7/613.full.html
Mutations in KIT, PDGFRA and BRAF were mutually exclusive in this study
http://www.royalmarsden.nhs.uk/education/gp/Documents/20110218/4-james-larkin-presentation.pdf
http://www.wistar.org/herlyn/col_ppg_mel.htmc-kit mutations in melanoma, particularly in acral and mucosal melanomas, that are mutually exclusive to BRAF and NRAS mutations,———
http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=724472&sk=&date=&pageID=2
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- August 31, 2011 at 6:15 am
IL-2 is the only treatment other than surgery that has a 5 to 6% long term (Esentially a cure) rate. I know people that have had it as their only stage IV treatment and have been out living life for the past 20 years now. Look up DebbieVA (http://www.caringbridge.org/visit/debbiehennessy) and Jane from Maine in the archives. They have been NED (No Evidence of Disease) detected in about five years after IL-2. Nothing else has yet been proven to have an across the board success rate of the long term cure and few new treatments have even exceeded the 20% response rate of across the board patients treated with il-2. While IL-2 is rough for the short term, The negative side effets are usually short term and the elimination of finding melanoma cells in ones body can be forever. Both ipi and il-2 seem to often help improve the action of other chemo treatments. Jimmy B, (James M. Breitfeller) medical researcher has looked deeply into what he believes is the technicals details of why, after ipi "failed" and he tried IL-2, he has been NED.
http://www.box.net/shared/kjgr6dkztj
It explains the immune system and scientifically why my treatment worked. It has a references (Research papers) at the end of it. I also wrote another small piece called
"The Making of an Immune Response by Combinatorial Therapy Using Anti-CTLA-4 Blockade and Interleukin-2" It is an add on to the other paper.https://www.box.net/shared/n0xcdimy5d
There are other papers also that pertain to our topic Melanoma/treatment at http://melanomamissionary.blogspot.com/ Melanoma Missionary.
There is a Shared file section at the website with some of reseach papers that I thought might be informative to patients, caregivers, oncologists and researchers. The papers I wrote, I tried to bring the language down to layman terms.
*************************************************
BRAF—-c-Kit
jcp.bmj.com/content/62/7/613.full.html
Mutations in KIT, PDGFRA and BRAF were mutually exclusive in this study
http://www.royalmarsden.nhs.uk/education/gp/Documents/20110218/4-james-larkin-presentation.pdf
http://www.wistar.org/herlyn/col_ppg_mel.htmc-kit mutations in melanoma, particularly in acral and mucosal melanomas, that are mutually exclusive to BRAF and NRAS mutations,———
http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=724472&sk=&date=&pageID=2
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