› Forums › General Melanoma Community › Tough Thanksgiving. Diagnosed with Stage IV. Where to go?
- This topic has 42 replies, 9 voices, and was last updated 11 years, 4 months ago by
JC.
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- November 25, 2012 at 5:10 pm
I have been on this board periodically in the past. Had a routine CT scan the day before Thanksgiving. Sadly, I have recurrent disease after being diagnosed with Stage IIIB in 04/2008. I had done perfect up until now. Had 2 positve sentinel nodes. CLND showed 33 other nodes negative for disease. Did the year of Interferon. CT last year was completely clear in 11/2011. Now I have mets to the liver about 8 x 10 cm aggregate between the 2 liver lobes possibly involving the gall bladder. There is also a possible peritoneal met near the duode
I have been on this board periodically in the past. Had a routine CT scan the day before Thanksgiving. Sadly, I have recurrent disease after being diagnosed with Stage IIIB in 04/2008. I had done perfect up until now. Had 2 positve sentinel nodes. CLND showed 33 other nodes negative for disease. Did the year of Interferon. CT last year was completely clear in 11/2011. Now I have mets to the liver about 8 x 10 cm aggregate between the 2 liver lobes possibly involving the gall bladder. There is also a possible peritoneal met near the duodenum. There are some other intrapabdominal/mesenteric nodes.
Emotionally difficult. As all here know, life hangs in the balance. I am having bilateral hip pain and calf pain. The hip area was seen on the pelvic CT and no masses there. I do fear given my symptoms the PET will show otherwise. I am scheduled for a bone scan, PET scan and Liver Biopsy this coming week. I'll meet with my local oncologist and also Thomas Gajewski at the University of Chicago this coming week to begin to explore options. There are some but not extensive trials at the U of C. Of course the marker testing will determine the options. I am just beginiing to get a handle on the options/decisions. I am fortunate or unfortunate to be a physician. Still, this brings up a lot of complicated issues. First, I need to work to support my family. When I don't work, I am not earning security for my family and could lose my health insurance. This is in a sense an orphan disease. Hard to get informed recommendations from colleagues on where to go. It is also difficult to drop everything at the drop of a hat and travel for therapy. Still I know I have to be proactive and aggressive with the prognosis of this disease. My fear is that given the progression from NED to extensive abdominal involvement, I have aggressive disease. Probably not much time to be collecting opinions and not starting treatment.
The big question I have is where would be the best place for another opinion. The usual places are being considered. MD Anderson, Sloan Kettering, Moffitt, Mass General and the NIH. These are not the only places. What I am looking for is the place with the greatest access to trials and a team of physicians willing to be creative given the low response rate to the standarded therapies. I am interested in the PD-1 trials. I am not sure if they are still open and it seems you have to failed another therapy first before becoming a candidate. It seems in the past the NIH was the place to be, but I don't see as much chatter about them as of late compared to last year. I am looking for the opinions of those who have spent extensive time researching these insitutions and the conclusions they made. I thank all in advance for taking the time to share their experiences and expertise.
Kevin
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- November 25, 2012 at 6:55 pm
I'm sorry that you're back in the ring with melanoma. But it sounds like you really have been doing very well these last few years. And now there are more and better new melanoma treatments than there were when you were first diagnosed. So hang in there!
I'm sure that you will get many excellent recommendations from the folks here. My brother has been treated at Moffitt in Tampa and we are very happy with the knowledge and professionalism of the people there, especially Dr. Jeffrey Weber. On the other hand, if I had my heart's desire, it would probably be MD Anderson because of their new "Moon Shots" program attempting to focus maximally on a handful of potentially "curable" cancers including melanoma. (See http://www.mdanderson.org/newsroom/news-releases/2012/ut-md-anderson-cancer-center-launches-unprecedented-moon-shots-program.html ).
It's only human to be frustrated, but don't get discouraged! There are a lot of promising new treatments out there! Keep us posted about your decision.
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- November 25, 2012 at 6:55 pm
I'm sorry that you're back in the ring with melanoma. But it sounds like you really have been doing very well these last few years. And now there are more and better new melanoma treatments than there were when you were first diagnosed. So hang in there!
I'm sure that you will get many excellent recommendations from the folks here. My brother has been treated at Moffitt in Tampa and we are very happy with the knowledge and professionalism of the people there, especially Dr. Jeffrey Weber. On the other hand, if I had my heart's desire, it would probably be MD Anderson because of their new "Moon Shots" program attempting to focus maximally on a handful of potentially "curable" cancers including melanoma. (See http://www.mdanderson.org/newsroom/news-releases/2012/ut-md-anderson-cancer-center-launches-unprecedented-moon-shots-program.html ).
It's only human to be frustrated, but don't get discouraged! There are a lot of promising new treatments out there! Keep us posted about your decision.
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- November 25, 2012 at 6:55 pm
I'm sorry that you're back in the ring with melanoma. But it sounds like you really have been doing very well these last few years. And now there are more and better new melanoma treatments than there were when you were first diagnosed. So hang in there!
I'm sure that you will get many excellent recommendations from the folks here. My brother has been treated at Moffitt in Tampa and we are very happy with the knowledge and professionalism of the people there, especially Dr. Jeffrey Weber. On the other hand, if I had my heart's desire, it would probably be MD Anderson because of their new "Moon Shots" program attempting to focus maximally on a handful of potentially "curable" cancers including melanoma. (See http://www.mdanderson.org/newsroom/news-releases/2012/ut-md-anderson-cancer-center-launches-unprecedented-moon-shots-program.html ).
It's only human to be frustrated, but don't get discouraged! There are a lot of promising new treatments out there! Keep us posted about your decision.
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- November 25, 2012 at 10:02 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
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- November 25, 2012 at 10:02 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
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- November 25, 2012 at 10:02 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
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- November 25, 2012 at 10:03 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
-
- November 25, 2012 at 10:03 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
-
- November 25, 2012 at 10:03 pm
Kevin – Sorry to hear that you've advanced to Stage IV. I was diagnosed Stage IV in 2005 and am still here, working full time, etc. All of the Hospitals that you listed are top notch and likely have Melanoma Specialists. I would suggest adding Dana Farber in Boston to your list. The melanoma team there is the reason that I'm still here today!
For info on DFCI and their melanoma program:
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- November 25, 2012 at 11:18 pm
Hi Kevin,
Sorry to hear you had to come back here. As you'd likely tell a patient, start with the first step. Have you had your original tumor tested for for genetic mutations (ie: BRAF, etc)? If not, contact the original oncologist and see if a sample was saved and where it is located. It will be very important in deciding what treatment you will want to follow. If you need to continue working then that may also have an impact on which treatment you choose.
I hope some folks that commute for treatments chime in here because I've gotta tell you, I have a 800 mile commute to my oncologist. Luckily I am stage 3a so right now it is just for scans but I can not imagine what it would be like if I was in active treatment. Unfortunately, where I live there are no Melanoma specialists and my dermatologist was smart enough to highly recommend that I see one. So what I am trying to say here is consider location in your decision matrix.
Mary
Stage 3
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- November 25, 2012 at 11:18 pm
Hi Kevin,
Sorry to hear you had to come back here. As you'd likely tell a patient, start with the first step. Have you had your original tumor tested for for genetic mutations (ie: BRAF, etc)? If not, contact the original oncologist and see if a sample was saved and where it is located. It will be very important in deciding what treatment you will want to follow. If you need to continue working then that may also have an impact on which treatment you choose.
I hope some folks that commute for treatments chime in here because I've gotta tell you, I have a 800 mile commute to my oncologist. Luckily I am stage 3a so right now it is just for scans but I can not imagine what it would be like if I was in active treatment. Unfortunately, where I live there are no Melanoma specialists and my dermatologist was smart enough to highly recommend that I see one. So what I am trying to say here is consider location in your decision matrix.
Mary
Stage 3
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- November 25, 2012 at 11:18 pm
Hi Kevin,
Sorry to hear you had to come back here. As you'd likely tell a patient, start with the first step. Have you had your original tumor tested for for genetic mutations (ie: BRAF, etc)? If not, contact the original oncologist and see if a sample was saved and where it is located. It will be very important in deciding what treatment you will want to follow. If you need to continue working then that may also have an impact on which treatment you choose.
I hope some folks that commute for treatments chime in here because I've gotta tell you, I have a 800 mile commute to my oncologist. Luckily I am stage 3a so right now it is just for scans but I can not imagine what it would be like if I was in active treatment. Unfortunately, where I live there are no Melanoma specialists and my dermatologist was smart enough to highly recommend that I see one. So what I am trying to say here is consider location in your decision matrix.
Mary
Stage 3
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- November 26, 2012 at 2:02 am
Welcome (unfortunately) to the flip side of medical care.
A recent post by Linny offers a very good summary of what is out there. In your assessment, I would encourage that you look at opportunities and options beyond "the best".
http://www.biomedcentral.com/1741-7015/10/23
What is best for you is a diverse mix of variables that suits your mind, schedule and quality of life.
I can tell you from experience, that the best and brightest are not always found in the press reviews; but rather in speaking with people in the hallways.
Choose wisely.
Cheers,
Charlie S
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- November 26, 2012 at 2:02 am
Welcome (unfortunately) to the flip side of medical care.
A recent post by Linny offers a very good summary of what is out there. In your assessment, I would encourage that you look at opportunities and options beyond "the best".
http://www.biomedcentral.com/1741-7015/10/23
What is best for you is a diverse mix of variables that suits your mind, schedule and quality of life.
I can tell you from experience, that the best and brightest are not always found in the press reviews; but rather in speaking with people in the hallways.
Choose wisely.
Cheers,
Charlie S
-
- November 26, 2012 at 2:02 am
Welcome (unfortunately) to the flip side of medical care.
A recent post by Linny offers a very good summary of what is out there. In your assessment, I would encourage that you look at opportunities and options beyond "the best".
http://www.biomedcentral.com/1741-7015/10/23
What is best for you is a diverse mix of variables that suits your mind, schedule and quality of life.
I can tell you from experience, that the best and brightest are not always found in the press reviews; but rather in speaking with people in the hallways.
Choose wisely.
Cheers,
Charlie S
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- November 26, 2012 at 3:26 am
Hey Kevin,
I've heard great things about MD Anderson. My husband is seen by NIH and he has been stage IV since March of 2008. We still see them for checkups and he did have sub Q's, lung mets and intestinal mets. I wouldn't rule them out, we always thougt they were very agressive and on top of things. We did meet with a couple of top hospitals in our area before choosing a path.
Good luck!
Rebecca
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- November 26, 2012 at 3:26 am
Hey Kevin,
I've heard great things about MD Anderson. My husband is seen by NIH and he has been stage IV since March of 2008. We still see them for checkups and he did have sub Q's, lung mets and intestinal mets. I wouldn't rule them out, we always thougt they were very agressive and on top of things. We did meet with a couple of top hospitals in our area before choosing a path.
Good luck!
Rebecca
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- November 26, 2012 at 3:26 am
Hey Kevin,
I've heard great things about MD Anderson. My husband is seen by NIH and he has been stage IV since March of 2008. We still see them for checkups and he did have sub Q's, lung mets and intestinal mets. I wouldn't rule them out, we always thougt they were very agressive and on top of things. We did meet with a couple of top hospitals in our area before choosing a path.
Good luck!
Rebecca
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- November 29, 2012 at 8:50 am
PS Kevin, you can e mail Dr Weber at Moffitt and ask about the anti pd 1 trials. I have been on it since fall 2010 and I am nearly finished. NED 2 years 8 months. Dr Weber will personally reply quickly…[email protected]
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- November 29, 2012 at 8:50 am
PS Kevin, you can e mail Dr Weber at Moffitt and ask about the anti pd 1 trials. I have been on it since fall 2010 and I am nearly finished. NED 2 years 8 months. Dr Weber will personally reply quickly…[email protected]
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- November 29, 2012 at 8:50 am
PS Kevin, you can e mail Dr Weber at Moffitt and ask about the anti pd 1 trials. I have been on it since fall 2010 and I am nearly finished. NED 2 years 8 months. Dr Weber will personally reply quickly…[email protected]
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- November 29, 2012 at 6:16 pm
Hi Kevin-
I didn't read other replies so others may have shared more useful info but here is my two cents. I am cruising on 10 years at Stage IV with 5+ of them with active disease (had a few year little NED vacation in there). I think with the exception of vaccines and NIH TIL protocol, I have had them all and been treated/visited just as many institutions. I am currently on PD1 trial in California at the Angeles Clinic and have had a great experience. That said, I would throw that name into your research line up. They have one site that is almost entirely trial patients so access seems to be quite high to a variety of options and patient care is great.
UCLA and Penn would be the other places I would consider especially as you make your decision on what to do next. Dr. Lynne Schucter at Penn is amazing and is a very critical and creative thinker as is Toni Ribas at UCLA. You may not end up in treatment with them based on what trials they have open but having a well versed opinion on what your options are can be invaluable. Then you need to find access to what you need and that is where Angeles Clinic might fit in. I am learning the further I go in this that it takes multiple minds to get the right treatment in place.
Happy to share more with you off line, just let me know.
Be well!
Napa K
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- November 29, 2012 at 6:16 pm
Hi Kevin-
I didn't read other replies so others may have shared more useful info but here is my two cents. I am cruising on 10 years at Stage IV with 5+ of them with active disease (had a few year little NED vacation in there). I think with the exception of vaccines and NIH TIL protocol, I have had them all and been treated/visited just as many institutions. I am currently on PD1 trial in California at the Angeles Clinic and have had a great experience. That said, I would throw that name into your research line up. They have one site that is almost entirely trial patients so access seems to be quite high to a variety of options and patient care is great.
UCLA and Penn would be the other places I would consider especially as you make your decision on what to do next. Dr. Lynne Schucter at Penn is amazing and is a very critical and creative thinker as is Toni Ribas at UCLA. You may not end up in treatment with them based on what trials they have open but having a well versed opinion on what your options are can be invaluable. Then you need to find access to what you need and that is where Angeles Clinic might fit in. I am learning the further I go in this that it takes multiple minds to get the right treatment in place.
Happy to share more with you off line, just let me know.
Be well!
Napa K
-
- November 29, 2012 at 6:16 pm
Hi Kevin-
I didn't read other replies so others may have shared more useful info but here is my two cents. I am cruising on 10 years at Stage IV with 5+ of them with active disease (had a few year little NED vacation in there). I think with the exception of vaccines and NIH TIL protocol, I have had them all and been treated/visited just as many institutions. I am currently on PD1 trial in California at the Angeles Clinic and have had a great experience. That said, I would throw that name into your research line up. They have one site that is almost entirely trial patients so access seems to be quite high to a variety of options and patient care is great.
UCLA and Penn would be the other places I would consider especially as you make your decision on what to do next. Dr. Lynne Schucter at Penn is amazing and is a very critical and creative thinker as is Toni Ribas at UCLA. You may not end up in treatment with them based on what trials they have open but having a well versed opinion on what your options are can be invaluable. Then you need to find access to what you need and that is where Angeles Clinic might fit in. I am learning the further I go in this that it takes multiple minds to get the right treatment in place.
Happy to share more with you off line, just let me know.
Be well!
Napa K
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- December 4, 2012 at 6:21 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
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- December 4, 2012 at 6:21 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
-
- December 4, 2012 at 6:21 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
-
- December 4, 2012 at 6:24 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
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- December 5, 2012 at 3:03 am
It sounds like you have connected with some excellent specialists and that you are beginning to focus in on a couple of promising treatment options. You really are taking the bull by the horns here. I know that you want to hurry up and GET STARTED ALREADY but really, you are making things move along very quickly. Good for you! Keep us posted about your progress.
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- December 5, 2012 at 3:03 am
It sounds like you have connected with some excellent specialists and that you are beginning to focus in on a couple of promising treatment options. You really are taking the bull by the horns here. I know that you want to hurry up and GET STARTED ALREADY but really, you are making things move along very quickly. Good for you! Keep us posted about your progress.
-
- December 5, 2012 at 3:03 am
It sounds like you have connected with some excellent specialists and that you are beginning to focus in on a couple of promising treatment options. You really are taking the bull by the horns here. I know that you want to hurry up and GET STARTED ALREADY but really, you are making things move along very quickly. Good for you! Keep us posted about your progress.
-
- December 4, 2012 at 6:24 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
-
- December 4, 2012 at 6:24 pm
First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart
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