› Forums › Mucosal Melanoma Community › Stage 4 mucosal melanoma, spread to liver, need advice
- This topic has 60 replies, 14 voices, and was last updated 7 years, 8 months ago by
gaiacnm.
- Post
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- August 13, 2012 at 11:17 pm
My husband Scott has stage 4 mucosal melanoma. He has just been diagnosed. There is no known origin.
It has spread to the liver. We are not able to do surgury because of the spreading to the liver.
Scott is going to have further tests for mutations, a PET scan and more full coverage CT scan to see if it has spread to the brain.
We were given 3 possible options for treatment:
1. Interlewken-excuse my spelling, but you know what I mean. I believe it's the same as Interferon.
My husband Scott has stage 4 mucosal melanoma. He has just been diagnosed. There is no known origin.
It has spread to the liver. We are not able to do surgury because of the spreading to the liver.
Scott is going to have further tests for mutations, a PET scan and more full coverage CT scan to see if it has spread to the brain.
We were given 3 possible options for treatment:
1. Interlewken-excuse my spelling, but you know what I mean. I believe it's the same as Interferon.
2. Zelboraf, if Scott has the Braf mutation.
3. Yervoy, seems effective. An option for now if the cancer has not spread to the brain.
We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first.
It seems like it would be good to have the Braf mutation so that there is another option.
Any advice is appreciated. I'd like to hear about experiences that others have had with these drugs.
We are sort of in a walking coma right now trying to process this all. It's been overload on the brain.
One plan was to go to MD Anderson or Dana Faerber for a consult and see if we can get any other options.
Please help if you can, there is so little out there about this. Lisa
- Replies
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- August 14, 2012 at 12:36 am
Please get another opinion at MD Anderson or Dana Farber. You need to find a melanoma specialist as this is an unusual cancer. General oncologists – even though they are very knowledgeable – are not familiar with the newest treatments for melanoma.
You are probably in shock at this new diagnosis. Things will calm down as you gain more information and assimilate the news. Take deep breaths. Please post again when you know more. Prayers, Fen
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- August 14, 2012 at 12:36 am
Please get another opinion at MD Anderson or Dana Farber. You need to find a melanoma specialist as this is an unusual cancer. General oncologists – even though they are very knowledgeable – are not familiar with the newest treatments for melanoma.
You are probably in shock at this new diagnosis. Things will calm down as you gain more information and assimilate the news. Take deep breaths. Please post again when you know more. Prayers, Fen
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- August 14, 2012 at 12:36 am
Please get another opinion at MD Anderson or Dana Farber. You need to find a melanoma specialist as this is an unusual cancer. General oncologists – even though they are very knowledgeable – are not familiar with the newest treatments for melanoma.
You are probably in shock at this new diagnosis. Things will calm down as you gain more information and assimilate the news. Take deep breaths. Please post again when you know more. Prayers, Fen
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- August 14, 2012 at 2:06 am
Please do a search on this site for an Awillet. He posted a link to an article from ASCO ( American society of clinical oncologists) regarding Yervoy ( aka IPI), IL2 (interleukin 2) and BRAF drugs which does a great job of spelling out which drugs are more useful for which patients and info that is currently known about which order to proceed with.I’m sorry you have had to join us here on this site and especially sorry you had to be diagnosed stage 4 initially. Please try to educate your self as much as possible. Thankfully there are options for stage 4 patients.
Julie in Las Vegas
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- August 14, 2012 at 2:15 am
http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2012/zds00112000524.PDFTry the above link. I think I did it right.
Julie
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- August 14, 2012 at 2:15 am
http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2012/zds00112000524.PDFTry the above link. I think I did it right.
Julie
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- August 14, 2012 at 2:15 am
http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2012/zds00112000524.PDFTry the above link. I think I did it right.
Julie
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- August 14, 2012 at 2:06 am
Please do a search on this site for an Awillet. He posted a link to an article from ASCO ( American society of clinical oncologists) regarding Yervoy ( aka IPI), IL2 (interleukin 2) and BRAF drugs which does a great job of spelling out which drugs are more useful for which patients and info that is currently known about which order to proceed with.I’m sorry you have had to join us here on this site and especially sorry you had to be diagnosed stage 4 initially. Please try to educate your self as much as possible. Thankfully there are options for stage 4 patients.
Julie in Las Vegas
-
- August 14, 2012 at 2:06 am
Please do a search on this site for an Awillet. He posted a link to an article from ASCO ( American society of clinical oncologists) regarding Yervoy ( aka IPI), IL2 (interleukin 2) and BRAF drugs which does a great job of spelling out which drugs are more useful for which patients and info that is currently known about which order to proceed with.I’m sorry you have had to join us here on this site and especially sorry you had to be diagnosed stage 4 initially. Please try to educate your self as much as possible. Thankfully there are options for stage 4 patients.
Julie in Las Vegas
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- August 14, 2012 at 2:00 pm
I am curious, if there was no known origin, how there was a dx of mucosal? I thought that mucosal was the same as cutaneous, and treated basically the same, the only difference was that the origin was "inside" (nasal, oral, rectal) rather than out…maybe I am wrong?
Good luck to you and your husband
Becky
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- August 14, 2012 at 2:00 pm
I am curious, if there was no known origin, how there was a dx of mucosal? I thought that mucosal was the same as cutaneous, and treated basically the same, the only difference was that the origin was "inside" (nasal, oral, rectal) rather than out…maybe I am wrong?
Good luck to you and your husband
Becky
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- August 14, 2012 at 2:06 pm
No, it's mucosal. That's what the pathology report and Oncologist said. I believe that's what it's called any time that it originates inside the body in a saliva type area and not on the exterior (skin) cutaneous, like you said.
It does act differently so you do need to see someone that specializes in the field, which is few and far between. It looks like we will be going to Boston, Dana Farber.
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- August 14, 2012 at 2:09 pm
I guess I was confused that you said there was no known origin…how did they know where it originated?
I was told (my son has oral melanoma) that once it spreads, it is treated the same as any other melanoma.
Keep us posted on what Dana Farber says
Becky
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- August 14, 2012 at 2:09 pm
I guess I was confused that you said there was no known origin…how did they know where it originated?
I was told (my son has oral melanoma) that once it spreads, it is treated the same as any other melanoma.
Keep us posted on what Dana Farber says
Becky
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- August 14, 2012 at 2:09 pm
I guess I was confused that you said there was no known origin…how did they know where it originated?
I was told (my son has oral melanoma) that once it spreads, it is treated the same as any other melanoma.
Keep us posted on what Dana Farber says
Becky
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- August 7, 2016 at 10:34 pm
I was diagnosed with Stage IV rectal mucosal melanoma during a routine colonoscopy in March. Multiple mets to the liver. I was referred to Dana Farber & entered a clinical trial of Ipilumab & Nivolumab (immunotherapy) plus Sargramostim. After just 3 treatments, repeat scans showed a 45% decrease in liver tumors & the primary rectal tumor is GONE! This treatment 7 Dana Farber Melanoma Center are saving my life. Go there!
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- August 7, 2016 at 10:34 pm
I was diagnosed with Stage IV rectal mucosal melanoma during a routine colonoscopy in March. Multiple mets to the liver. I was referred to Dana Farber & entered a clinical trial of Ipilumab & Nivolumab (immunotherapy) plus Sargramostim. After just 3 treatments, repeat scans showed a 45% decrease in liver tumors & the primary rectal tumor is GONE! This treatment 7 Dana Farber Melanoma Center are saving my life. Go there!
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- August 7, 2016 at 10:34 pm
I was diagnosed with Stage IV rectal mucosal melanoma during a routine colonoscopy in March. Multiple mets to the liver. I was referred to Dana Farber & entered a clinical trial of Ipilumab & Nivolumab (immunotherapy) plus Sargramostim. After just 3 treatments, repeat scans showed a 45% decrease in liver tumors & the primary rectal tumor is GONE! This treatment 7 Dana Farber Melanoma Center are saving my life. Go there!
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- August 14, 2012 at 2:06 pm
No, it's mucosal. That's what the pathology report and Oncologist said. I believe that's what it's called any time that it originates inside the body in a saliva type area and not on the exterior (skin) cutaneous, like you said.
It does act differently so you do need to see someone that specializes in the field, which is few and far between. It looks like we will be going to Boston, Dana Farber.
-
- August 14, 2012 at 2:06 pm
No, it's mucosal. That's what the pathology report and Oncologist said. I believe that's what it's called any time that it originates inside the body in a saliva type area and not on the exterior (skin) cutaneous, like you said.
It does act differently so you do need to see someone that specializes in the field, which is few and far between. It looks like we will be going to Boston, Dana Farber.
-
- November 21, 2013 at 5:40 pm
If you read anything written after 2012, you would learn that mucosal melanoma is genetically completely different from cutaneous melanoma, and should be treated as a complete, distinct disease. I am in remission from mucosal melanoma after receiving a chemo treatment of cisplatin and temodar. Since I had that the science has learned that cancer treatment is about the genetic mutations not the origin or site of the cancer.
Have the tumor completely genetically sequenced and try to get into the immunotherapy trials. This was the advice I received from the Patterson Institute in the UK who has completely sequenced mucosal melanoma.
Please go to a major cancer center.
Anne
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- November 21, 2013 at 5:40 pm
If you read anything written after 2012, you would learn that mucosal melanoma is genetically completely different from cutaneous melanoma, and should be treated as a complete, distinct disease. I am in remission from mucosal melanoma after receiving a chemo treatment of cisplatin and temodar. Since I had that the science has learned that cancer treatment is about the genetic mutations not the origin or site of the cancer.
Have the tumor completely genetically sequenced and try to get into the immunotherapy trials. This was the advice I received from the Patterson Institute in the UK who has completely sequenced mucosal melanoma.
Please go to a major cancer center.
Anne
-
- November 21, 2013 at 5:40 pm
If you read anything written after 2012, you would learn that mucosal melanoma is genetically completely different from cutaneous melanoma, and should be treated as a complete, distinct disease. I am in remission from mucosal melanoma after receiving a chemo treatment of cisplatin and temodar. Since I had that the science has learned that cancer treatment is about the genetic mutations not the origin or site of the cancer.
Have the tumor completely genetically sequenced and try to get into the immunotherapy trials. This was the advice I received from the Patterson Institute in the UK who has completely sequenced mucosal melanoma.
Please go to a major cancer center.
Anne
-
- August 14, 2012 at 2:00 pm
I am curious, if there was no known origin, how there was a dx of mucosal? I thought that mucosal was the same as cutaneous, and treated basically the same, the only difference was that the origin was "inside" (nasal, oral, rectal) rather than out…maybe I am wrong?
Good luck to you and your husband
Becky
-
- August 14, 2012 at 2:50 pm
I recommend going to MD Anderson because they're amongst the best in cancer treatment and treated my dad when he was diagnosed with mucosal melanoma in the nasal cavity. He's 5yrs NED now. Definitely also ask about the CKit mutation, which is more often found in mucosal melanoma, which can be used in systemic treatment.
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- August 14, 2012 at 7:00 pm
My husband, Phil has mucosal melanoma (rectum) and has been battling for 2 and 1/2 years at this point. He has been treated at Dana Farber and MD Anderson, in fact we just returned from Boston today. The main difference with mucosal melanoma is that it rarely has the BRAF mutation, however you will need to be tested for CKIT and if you have that mutation they will offer you the drug, Gleevec. Other than that mucosal melanoma is treated the same as cutaneous melanoma by the major treatment centers. Phil’s cancer has spread to his lung, stomach cavity, and brain and he has no known mutations, negative on CKIT. He has received one year of interferon, surgeries, radiation, six rounds of biochemo and the TIL Adoptive Cell trial at MDAnderson. Phil is currently stable, but our next step is antiPD1 trial or Yervoy. Phil has received all his treatments right along side many other melanoma patients, all with cutaneous melanoma. If your husband’s cancer is confined to small areas of his liver, then surgery or infusing the liver directly with chemo or immuno therapy may be an option. However, mucosal melanoma is generally regarded as more aggressive, so systematic therapy like I described is often considered best to target the whole body. Good luck to you, I know it’s a scary time, but once you know your plan of attack, you will feel better. We
are here to help and to support you. God Bless, Valerie (Phil’s wife) -
- August 14, 2012 at 7:00 pm
My husband, Phil has mucosal melanoma (rectum) and has been battling for 2 and 1/2 years at this point. He has been treated at Dana Farber and MD Anderson, in fact we just returned from Boston today. The main difference with mucosal melanoma is that it rarely has the BRAF mutation, however you will need to be tested for CKIT and if you have that mutation they will offer you the drug, Gleevec. Other than that mucosal melanoma is treated the same as cutaneous melanoma by the major treatment centers. Phil’s cancer has spread to his lung, stomach cavity, and brain and he has no known mutations, negative on CKIT. He has received one year of interferon, surgeries, radiation, six rounds of biochemo and the TIL Adoptive Cell trial at MDAnderson. Phil is currently stable, but our next step is antiPD1 trial or Yervoy. Phil has received all his treatments right along side many other melanoma patients, all with cutaneous melanoma. If your husband’s cancer is confined to small areas of his liver, then surgery or infusing the liver directly with chemo or immuno therapy may be an option. However, mucosal melanoma is generally regarded as more aggressive, so systematic therapy like I described is often considered best to target the whole body. Good luck to you, I know it’s a scary time, but once you know your plan of attack, you will feel better. We
are here to help and to support you. God Bless, Valerie (Phil’s wife) -
- August 14, 2012 at 7:00 pm
My husband, Phil has mucosal melanoma (rectum) and has been battling for 2 and 1/2 years at this point. He has been treated at Dana Farber and MD Anderson, in fact we just returned from Boston today. The main difference with mucosal melanoma is that it rarely has the BRAF mutation, however you will need to be tested for CKIT and if you have that mutation they will offer you the drug, Gleevec. Other than that mucosal melanoma is treated the same as cutaneous melanoma by the major treatment centers. Phil’s cancer has spread to his lung, stomach cavity, and brain and he has no known mutations, negative on CKIT. He has received one year of interferon, surgeries, radiation, six rounds of biochemo and the TIL Adoptive Cell trial at MDAnderson. Phil is currently stable, but our next step is antiPD1 trial or Yervoy. Phil has received all his treatments right along side many other melanoma patients, all with cutaneous melanoma. If your husband’s cancer is confined to small areas of his liver, then surgery or infusing the liver directly with chemo or immuno therapy may be an option. However, mucosal melanoma is generally regarded as more aggressive, so systematic therapy like I described is often considered best to target the whole body. Good luck to you, I know it’s a scary time, but once you know your plan of attack, you will feel better. We
are here to help and to support you. God Bless, Valerie (Phil’s wife) -
- August 14, 2012 at 7:51 pm
Valerie,
Thanks so much for sharing what you know with me. I am encouraged by hearing what has worked for you.
We do not know the results yet for the mutations, it would be great if he had a c-kit mutation, it's always nice to have another option
.I had no idea some of the things you mentioned were even options. The only things presented to us last night by an oncologist were Interferon, the C-kit drug if he has the mutation or Iplumimab. We were told that radiation was not used and I don't even know about biochemo or the other things you mentioned.
We don't know if Scott's can do some things because we are not sure if it's spread to his brain yet. Does that limit what drugs that you are offered if you are stage IV and it's in the brain?
How was the Interferon treatment? Where did you do it? How long do you have to stay at these places when you visit? Do you mind me asking where you are from.
You have been very helpful. Thanks so much for getting back with me. Best of luck to you and Phil. Lisa (Scott's wife)
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- August 14, 2012 at 7:51 pm
Valerie,
Thanks so much for sharing what you know with me. I am encouraged by hearing what has worked for you.
We do not know the results yet for the mutations, it would be great if he had a c-kit mutation, it's always nice to have another option
.I had no idea some of the things you mentioned were even options. The only things presented to us last night by an oncologist were Interferon, the C-kit drug if he has the mutation or Iplumimab. We were told that radiation was not used and I don't even know about biochemo or the other things you mentioned.
We don't know if Scott's can do some things because we are not sure if it's spread to his brain yet. Does that limit what drugs that you are offered if you are stage IV and it's in the brain?
How was the Interferon treatment? Where did you do it? How long do you have to stay at these places when you visit? Do you mind me asking where you are from.
You have been very helpful. Thanks so much for getting back with me. Best of luck to you and Phil. Lisa (Scott's wife)
-
- August 14, 2012 at 7:51 pm
Valerie,
Thanks so much for sharing what you know with me. I am encouraged by hearing what has worked for you.
We do not know the results yet for the mutations, it would be great if he had a c-kit mutation, it's always nice to have another option
.I had no idea some of the things you mentioned were even options. The only things presented to us last night by an oncologist were Interferon, the C-kit drug if he has the mutation or Iplumimab. We were told that radiation was not used and I don't even know about biochemo or the other things you mentioned.
We don't know if Scott's can do some things because we are not sure if it's spread to his brain yet. Does that limit what drugs that you are offered if you are stage IV and it's in the brain?
How was the Interferon treatment? Where did you do it? How long do you have to stay at these places when you visit? Do you mind me asking where you are from.
You have been very helpful. Thanks so much for getting back with me. Best of luck to you and Phil. Lisa (Scott's wife)
-
- August 14, 2012 at 8:15 pm
Lisa, If you feel comfortable, email me directly at [email protected] and I could share all I know. We are pretty familiar with both MDAnderson and Dana Farber at this point. Doubt they are offering interferon to Scott if he is already stage IV with liver mets, Phil did interferon when he was Stage 3. They may offer Scott high dose IL2 at this point, you are on the learning curve we all had at the beginning! We are from upstate NY, but travel for treatment, no melanoma specialists in our small area. Let’s communicate again soon, take it one day at a time! Take care, Valerie -
- August 14, 2012 at 8:15 pm
Lisa, If you feel comfortable, email me directly at [email protected] and I could share all I know. We are pretty familiar with both MDAnderson and Dana Farber at this point. Doubt they are offering interferon to Scott if he is already stage IV with liver mets, Phil did interferon when he was Stage 3. They may offer Scott high dose IL2 at this point, you are on the learning curve we all had at the beginning! We are from upstate NY, but travel for treatment, no melanoma specialists in our small area. Let’s communicate again soon, take it one day at a time! Take care, Valerie -
- August 14, 2012 at 8:15 pm
Lisa, If you feel comfortable, email me directly at [email protected] and I could share all I know. We are pretty familiar with both MDAnderson and Dana Farber at this point. Doubt they are offering interferon to Scott if he is already stage IV with liver mets, Phil did interferon when he was Stage 3. They may offer Scott high dose IL2 at this point, you are on the learning curve we all had at the beginning! We are from upstate NY, but travel for treatment, no melanoma specialists in our small area. Let’s communicate again soon, take it one day at a time! Take care, Valerie
-
- August 14, 2012 at 2:50 pm
I recommend going to MD Anderson because they're amongst the best in cancer treatment and treated my dad when he was diagnosed with mucosal melanoma in the nasal cavity. He's 5yrs NED now. Definitely also ask about the CKit mutation, which is more often found in mucosal melanoma, which can be used in systemic treatment.
-
- August 14, 2012 at 2:50 pm
I recommend going to MD Anderson because they're amongst the best in cancer treatment and treated my dad when he was diagnosed with mucosal melanoma in the nasal cavity. He's 5yrs NED now. Definitely also ask about the CKit mutation, which is more often found in mucosal melanoma, which can be used in systemic treatment.
-
- August 23, 2012 at 1:30 pm
Lisa,
I’m new to the forum but not To mucosal melanoma. First, I’d like to suggest you immediately contact mD Anserson-melanoma dept. have all your scans ready to sent in to them. The quicker the better. My mom was dx stage 4 in feb 12. Sinus tumor w liver mets. She went through biochemo and is now on zelboraf. It’s has not been an easy road but we just had favorable pet scan results! This is our second cancer fight in 5 years. Keep the Faith! It’s a beast of an illness! Pray Pray Pray! Let me know if I can answer any questions. -
- August 23, 2012 at 1:30 pm
Lisa,
I’m new to the forum but not To mucosal melanoma. First, I’d like to suggest you immediately contact mD Anserson-melanoma dept. have all your scans ready to sent in to them. The quicker the better. My mom was dx stage 4 in feb 12. Sinus tumor w liver mets. She went through biochemo and is now on zelboraf. It’s has not been an easy road but we just had favorable pet scan results! This is our second cancer fight in 5 years. Keep the Faith! It’s a beast of an illness! Pray Pray Pray! Let me know if I can answer any questions. -
- August 23, 2012 at 1:30 pm
Lisa,
I’m new to the forum but not To mucosal melanoma. First, I’d like to suggest you immediately contact mD Anserson-melanoma dept. have all your scans ready to sent in to them. The quicker the better. My mom was dx stage 4 in feb 12. Sinus tumor w liver mets. She went through biochemo and is now on zelboraf. It’s has not been an easy road but we just had favorable pet scan results! This is our second cancer fight in 5 years. Keep the Faith! It’s a beast of an illness! Pray Pray Pray! Let me know if I can answer any questions. -
- August 24, 2012 at 7:16 am
Shortly after going to stage IV and starting IL-2, I developed some nodules in my liver. These nodules did not continue to grow while I was taking the IL-2 (20 months). After the in-numerable lung tumors started growing wildly again, both in size and number and I developed additional tumors in more distant locations, the liver tumors never started growing again. This was in late Dec 2008. (Appear to now be necrotic tumor tissue.)
“"3. Yervoy, seems effective. An option for now if the cancer has not spread to the brain.
We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. "”
Who told you this about the IL-2 (Interleukin -2?)
Interleukin and Interferon are not the same. They are both immunology treatments as is Yervoy. IL-2 (FDAA approved in the late 1990's) is the only treatment that has previously shown a 20% chance of providing a complete (5%) or partial (15%) response rate against the broad spectrum of melanoma's.
Interferon has been highly questioned and in some cases is supposed to give a 50 fold increase in the immune system for 5% of melanoma patients, but is not rated as extending survival time, even though it has been shown to extend the time between re-occurrences. There are also reports that in 9% of melanoma cases re-occurrence occurs faster than would otherwise be expected. There is currently no guidance as to who will git the 50 fold enhancement and who will suffer the 9% increase. Studies are underway to try to learn this.Look at Jimmy B's indepth research about his timing and stopping of his melanoma with IL-2 after Ipi (Yervoy) failed to clear his melanoma. Subsequent IL-2 made him NED. As a professional researcher he looked int the reasons this appears to have worked.
http://melanomamissionary.blogspot.com/
He gets more technical than most of us can completely comprehend, but I know Melanoma researchers (Melanoma Oncology specialists) that think highly of Jimmy's work.The timing appears to be a highly critical component of the scheduling of one following the other.
I have heard of cases of either IL-2 or Ipi being given first and not succeeding and then being followed by the other and the combination being successful for some patients.
It appears that both IL-2 and Ipi can kind of "prime" the immune system for benefit from the other and even from additional chemo therapies.http://melanomamissionary.blogspot.com/
Melanoma_MissionaryThis is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
""Melanoma and the “Magic Bullet” (Monoclonal Antibodies)
Just to let you know I posted the first draft of the Melanoma and the “Magic Bullet” (Monoclonal Antibodies). on Melanoma Missionary In the Shared File Section. you can download it for 19.95 (Only kidding) it is Free for the taking.It is 33 pages long and may help you in your quest for the Yellow Brick Broad. Just to let you know it is only the first draft. Revisions are sure to come. I wanted to get it to the people that need it the most, the Melanoma Patients.""
You should also search the BB and BB archives for Jimmy B's posts.
Maybe print out some for taking to your Melanoma specialists visits. -
- August 24, 2012 at 7:16 am
Shortly after going to stage IV and starting IL-2, I developed some nodules in my liver. These nodules did not continue to grow while I was taking the IL-2 (20 months). After the in-numerable lung tumors started growing wildly again, both in size and number and I developed additional tumors in more distant locations, the liver tumors never started growing again. This was in late Dec 2008. (Appear to now be necrotic tumor tissue.)
“"3. Yervoy, seems effective. An option for now if the cancer has not spread to the brain.
We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. "”
Who told you this about the IL-2 (Interleukin -2?)
Interleukin and Interferon are not the same. They are both immunology treatments as is Yervoy. IL-2 (FDAA approved in the late 1990's) is the only treatment that has previously shown a 20% chance of providing a complete (5%) or partial (15%) response rate against the broad spectrum of melanoma's.
Interferon has been highly questioned and in some cases is supposed to give a 50 fold increase in the immune system for 5% of melanoma patients, but is not rated as extending survival time, even though it has been shown to extend the time between re-occurrences. There are also reports that in 9% of melanoma cases re-occurrence occurs faster than would otherwise be expected. There is currently no guidance as to who will git the 50 fold enhancement and who will suffer the 9% increase. Studies are underway to try to learn this.Look at Jimmy B's indepth research about his timing and stopping of his melanoma with IL-2 after Ipi (Yervoy) failed to clear his melanoma. Subsequent IL-2 made him NED. As a professional researcher he looked int the reasons this appears to have worked.
http://melanomamissionary.blogspot.com/
He gets more technical than most of us can completely comprehend, but I know Melanoma researchers (Melanoma Oncology specialists) that think highly of Jimmy's work.The timing appears to be a highly critical component of the scheduling of one following the other.
I have heard of cases of either IL-2 or Ipi being given first and not succeeding and then being followed by the other and the combination being successful for some patients.
It appears that both IL-2 and Ipi can kind of "prime" the immune system for benefit from the other and even from additional chemo therapies.http://melanomamissionary.blogspot.com/
Melanoma_MissionaryThis is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
""Melanoma and the “Magic Bullet” (Monoclonal Antibodies)
Just to let you know I posted the first draft of the Melanoma and the “Magic Bullet” (Monoclonal Antibodies). on Melanoma Missionary In the Shared File Section. you can download it for 19.95 (Only kidding) it is Free for the taking.It is 33 pages long and may help you in your quest for the Yellow Brick Broad. Just to let you know it is only the first draft. Revisions are sure to come. I wanted to get it to the people that need it the most, the Melanoma Patients.""
You should also search the BB and BB archives for Jimmy B's posts.
Maybe print out some for taking to your Melanoma specialists visits. -
- August 24, 2012 at 7:16 am
Shortly after going to stage IV and starting IL-2, I developed some nodules in my liver. These nodules did not continue to grow while I was taking the IL-2 (20 months). After the in-numerable lung tumors started growing wildly again, both in size and number and I developed additional tumors in more distant locations, the liver tumors never started growing again. This was in late Dec 2008. (Appear to now be necrotic tumor tissue.)
“"3. Yervoy, seems effective. An option for now if the cancer has not spread to the brain.
We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. "”
Who told you this about the IL-2 (Interleukin -2?)
Interleukin and Interferon are not the same. They are both immunology treatments as is Yervoy. IL-2 (FDAA approved in the late 1990's) is the only treatment that has previously shown a 20% chance of providing a complete (5%) or partial (15%) response rate against the broad spectrum of melanoma's.
Interferon has been highly questioned and in some cases is supposed to give a 50 fold increase in the immune system for 5% of melanoma patients, but is not rated as extending survival time, even though it has been shown to extend the time between re-occurrences. There are also reports that in 9% of melanoma cases re-occurrence occurs faster than would otherwise be expected. There is currently no guidance as to who will git the 50 fold enhancement and who will suffer the 9% increase. Studies are underway to try to learn this.Look at Jimmy B's indepth research about his timing and stopping of his melanoma with IL-2 after Ipi (Yervoy) failed to clear his melanoma. Subsequent IL-2 made him NED. As a professional researcher he looked int the reasons this appears to have worked.
http://melanomamissionary.blogspot.com/
He gets more technical than most of us can completely comprehend, but I know Melanoma researchers (Melanoma Oncology specialists) that think highly of Jimmy's work.The timing appears to be a highly critical component of the scheduling of one following the other.
I have heard of cases of either IL-2 or Ipi being given first and not succeeding and then being followed by the other and the combination being successful for some patients.
It appears that both IL-2 and Ipi can kind of "prime" the immune system for benefit from the other and even from additional chemo therapies.http://melanomamissionary.blogspot.com/
Melanoma_MissionaryThis is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
""Melanoma and the “Magic Bullet” (Monoclonal Antibodies)
Just to let you know I posted the first draft of the Melanoma and the “Magic Bullet” (Monoclonal Antibodies). on Melanoma Missionary In the Shared File Section. you can download it for 19.95 (Only kidding) it is Free for the taking.It is 33 pages long and may help you in your quest for the Yellow Brick Broad. Just to let you know it is only the first draft. Revisions are sure to come. I wanted to get it to the people that need it the most, the Melanoma Patients.""
You should also search the BB and BB archives for Jimmy B's posts.
Maybe print out some for taking to your Melanoma specialists visits. -
- October 16, 2012 at 9:42 pm
Dear Lisa –I am a melanoma mucosal survivor. My email address is [email protected]. I was in Stage 4 when diagnosed and am now cancer free. I was put on a clinical trial at Yale/Smilow Cancer Hospital. You need to bring your husband to Dr. Mario Sznol. He is the best in the business. Please email me if you would like to talk. I am happy to help. I have been there!
Dina
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- October 16, 2012 at 9:42 pm
Dear Lisa –I am a melanoma mucosal survivor. My email address is [email protected]. I was in Stage 4 when diagnosed and am now cancer free. I was put on a clinical trial at Yale/Smilow Cancer Hospital. You need to bring your husband to Dr. Mario Sznol. He is the best in the business. Please email me if you would like to talk. I am happy to help. I have been there!
Dina
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- October 16, 2012 at 9:42 pm
Dear Lisa –I am a melanoma mucosal survivor. My email address is [email protected]. I was in Stage 4 when diagnosed and am now cancer free. I was put on a clinical trial at Yale/Smilow Cancer Hospital. You need to bring your husband to Dr. Mario Sznol. He is the best in the business. Please email me if you would like to talk. I am happy to help. I have been there!
Dina
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- October 16, 2012 at 11:46 pm
I was put on the Ipilimumab/MDX1106 combination at Yale/Smilow with Dr. Mario Sznol. I became cancer free after only 1 treatment! I was told that Melanoma Mucosal is an aggressive form of weak cancer. They are making incredible progress with this form of cancer at Yale and Sloan. -
- October 16, 2012 at 11:46 pm
I was put on the Ipilimumab/MDX1106 combination at Yale/Smilow with Dr. Mario Sznol. I became cancer free after only 1 treatment! I was told that Melanoma Mucosal is an aggressive form of weak cancer. They are making incredible progress with this form of cancer at Yale and Sloan. -
- October 16, 2012 at 11:46 pm
I was put on the Ipilimumab/MDX1106 combination at Yale/Smilow with Dr. Mario Sznol. I became cancer free after only 1 treatment! I was told that Melanoma Mucosal is an aggressive form of weak cancer. They are making incredible progress with this form of cancer at Yale and Sloan.
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Tagged: mucosal melanoma
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