Yervoy, treatment and side effects?

I went to Mayo in Rochester MN. They gave me 6-9 months and put me on Temodar and radiation to give me a little more time. Temodar is not a cure by any means and while the radiation shrank it by 1/3 the Temodar kept it from growing and spreading for around 5 months and then it no longer works because melanoma finds a way around it. We had to move to do my trial…we lived in North Dakota and I enrolled in Anti PD 1 trial in Tampa Florida. I have now been in the trial for 90 weeks of 128 weeks. I am also NED for over 2 years ( no evidence of disease). For me the move was worth it. Mayo IS NOT a comprehensive melanoma center and typically has very few trials to benefit melanoma patients.

I went to Mayo in Rochester MN. They gave me 6-9 months and put me on Temodar and radiation to give me a little more time. Temodar is not a cure by any means and while the radiation shrank it by 1/3 the Temodar kept it from growing and spreading for around 5 months and then it no longer works because melanoma finds a way around it. We had to move to do my trial…we lived in North Dakota and I enrolled in Anti PD 1 trial in Tampa Florida. I have now been in the trial for 90 weeks of 128 weeks. I am also NED for over 2 years ( no evidence of disease). For me the move was worth it. Mayo IS NOT a comprehensive melanoma center and typically has very few trials to benefit melanoma patients.

Hi Jessica……I made a comment about being treated in a major medical center and threw out the "Mayo Clinic"  as a place of possibility,  it was a suggestion…..  that it is important to get to a place that is familiar with melanoma.    Mayo Clinic may not be the right place for melanoma…..I don't know, but I do know they have treated members of my own family with rare disorders that the medical community I live in were unable to successfully help them with but  they found success there.   The most important point I was trying to make was get to a major medical center and go from there.  Maybe you will find answers and find the right medical treatment that feels right for you. maybe you will need to move on to other sources.  It is so scarry to be thrown into this melanoma abyss as there is so much information out there with a lot of negative info that scares the pants off of you (rightfully so) and gives you little hope.  I too was given the worst case scenario but continue to live well despite ongoing surgeries and treatments.  The best thing about this board is everyone has an opinion, experiences and lots of great info and feedback for those seeking  advice.  You have found a wonderful place and don't hesitate to clarify statements that you don't completely understand. I wish you all the best and please don't waste a day living in fear…….celebrate today, live it, take it all in …. today is all any of us have!   God Bless you and your Dad and your family as you find your way through this time……….Swanee

Hi Jessica……I made a comment about being treated in a major medical center and threw out the "Mayo Clinic"  as a place of possibility,  it was a suggestion…..  that it is important to get to a place that is familiar with melanoma.    Mayo Clinic may not be the right place for melanoma…..I don't know, but I do know they have treated members of my own family with rare disorders that the medical community I live in were unable to successfully help them with but  they found success there.   The most important point I was trying to make was get to a major medical center and go from there.  Maybe you will find answers and find the right medical treatment that feels right for you. maybe you will need to move on to other sources.  It is so scarry to be thrown into this melanoma abyss as there is so much information out there with a lot of negative info that scares the pants off of you (rightfully so) and gives you little hope.  I too was given the worst case scenario but continue to live well despite ongoing surgeries and treatments.  The best thing about this board is everyone has an opinion, experiences and lots of great info and feedback for those seeking  advice.  You have found a wonderful place and don't hesitate to clarify statements that you don't completely understand. I wish you all the best and please don't waste a day living in fear…….celebrate today, live it, take it all in …. today is all any of us have!   God Bless you and your Dad and your family as you find your way through this time……….Swanee

Hi Jessica……I made a comment about being treated in a major medical center and threw out the "Mayo Clinic"  as a place of possibility,  it was a suggestion…..  that it is important to get to a place that is familiar with melanoma.    Mayo Clinic may not be the right place for melanoma…..I don't know, but I do know they have treated members of my own family with rare disorders that the medical community I live in were unable to successfully help them with but  they found success there.   The most important point I was trying to make was get to a major medical center and go from there.  Maybe you will find answers and find the right medical treatment that feels right for you. maybe you will need to move on to other sources.  It is so scarry to be thrown into this melanoma abyss as there is so much information out there with a lot of negative info that scares the pants off of you (rightfully so) and gives you little hope.  I too was given the worst case scenario but continue to live well despite ongoing surgeries and treatments.  The best thing about this board is everyone has an opinion, experiences and lots of great info and feedback for those seeking  advice.  You have found a wonderful place and don't hesitate to clarify statements that you don't completely understand. I wish you all the best and please don't waste a day living in fear…….celebrate today, live it, take it all in …. today is all any of us have!   God Bless you and your Dad and your family as you find your way through this time……….Swanee

I went to Mayo in Rochester MN. They gave me 6-9 months and put me on Temodar and radiation to give me a little more time. Temodar is not a cure by any means and while the radiation shrank it by 1/3 the Temodar kept it from growing and spreading for around 5 months and then it no longer works because melanoma finds a way around it. We had to move to do my trial…we lived in North Dakota and I enrolled in Anti PD 1 trial in Tampa Florida. I have now been in the trial for 90 weeks of 128 weeks. I am also NED for over 2 years ( no evidence of disease). For me the move was worth it. Mayo IS NOT a comprehensive melanoma center and typically has very few trials to benefit melanoma patients.

Midwest
Multidisciplinary Melanoma Clinic
Comprehensive Cancer Center, University of Michigan
Ann Arbor, MI
734-936-6360
http://www.cancer.med.umich.edu/clinic/melclinic.htm

Pigmented Lesion Clinic
Henry Ford Hospital
Detroit, MI
313-916-4060

Multidisciplinary Melanoma Clinic
Karmanos Cancer Institute
Wayne State University
Detroit, MI
313-745-9166
1-800-Karmanos

Multidisciplinary Melanoma and Pigmented Lesion Clinic
University of Cincinnati Medical Center
Cincinnati, OH
513-584-8900

MetroHealth Medical Center
Cancer Care Center Melanoma Program
2500 MetroHealth Drive
Cleveland, Ohio 44109

(216) 778-4795 (Surgical Oncology)
(216) 778-5802 (Medical Oncology)
The Melanoma Clinic at the Cleveland Clinic Taussig Cancer Center
Cleveland, OH
http://www.clevelandclinic.org/cancer

The Melanoma Center At The James
Ohio State University
Columbus, OH
614-293-7531 (medical)
614-293-5644 (surgical)

Wagner & Associates Plastic and Reconstructive Surgery Consultants of Indiana
Indianapolis, IN
317-621-2520
317-621-2580

Interdisciplinary Melanoma Clinic
Indiana University Cancer Center, Indiana University Medical Center
Indianapolis, IN
317-278-7449

Cardinal Bernardin Cancer Center
Loyola University Chicago
Chicago, IL
708-327-2078
http://www.luhs.org

Pigmented Lesion Center
Rush University
Chicago, IL
312-563-2321
http://www.rush.edu/rumc/page-R12605.html

Melanoma and Pigmented Lesion Center
University of Minnesota
Minneapolis, MN
612-625-5199

Multidisciplinary Melanoma Group
St. Louis University Health Sciences Center/SLUCare
St. Louis, MO
314-268-5320

Midwest
Multidisciplinary Melanoma Clinic
Comprehensive Cancer Center, University of Michigan
Ann Arbor, MI
734-936-6360
http://www.cancer.med.umich.edu/clinic/melclinic.htm

Pigmented Lesion Clinic
Henry Ford Hospital
Detroit, MI
313-916-4060

Multidisciplinary Melanoma Clinic
Karmanos Cancer Institute
Wayne State University
Detroit, MI
313-745-9166
1-800-Karmanos

Multidisciplinary Melanoma and Pigmented Lesion Clinic
University of Cincinnati Medical Center
Cincinnati, OH
513-584-8900

MetroHealth Medical Center
Cancer Care Center Melanoma Program
2500 MetroHealth Drive
Cleveland, Ohio 44109

(216) 778-4795 (Surgical Oncology)
(216) 778-5802 (Medical Oncology)
The Melanoma Clinic at the Cleveland Clinic Taussig Cancer Center
Cleveland, OH
http://www.clevelandclinic.org/cancer

The Melanoma Center At The James
Ohio State University
Columbus, OH
614-293-7531 (medical)
614-293-5644 (surgical)

Wagner & Associates Plastic and Reconstructive Surgery Consultants of Indiana
Indianapolis, IN
317-621-2520
317-621-2580

Interdisciplinary Melanoma Clinic
Indiana University Cancer Center, Indiana University Medical Center
Indianapolis, IN
317-278-7449

Cardinal Bernardin Cancer Center
Loyola University Chicago
Chicago, IL
708-327-2078
http://www.luhs.org

Pigmented Lesion Center
Rush University
Chicago, IL
312-563-2321
http://www.rush.edu/rumc/page-R12605.html

Melanoma and Pigmented Lesion Center
University of Minnesota
Minneapolis, MN
612-625-5199

Multidisciplinary Melanoma Group
St. Louis University Health Sciences Center/SLUCare
St. Louis, MO
314-268-5320

Midwest
Multidisciplinary Melanoma Clinic
Comprehensive Cancer Center, University of Michigan
Ann Arbor, MI
734-936-6360
http://www.cancer.med.umich.edu/clinic/melclinic.htm

Pigmented Lesion Clinic
Henry Ford Hospital
Detroit, MI
313-916-4060

Multidisciplinary Melanoma Clinic
Karmanos Cancer Institute
Wayne State University
Detroit, MI
313-745-9166
1-800-Karmanos

Multidisciplinary Melanoma and Pigmented Lesion Clinic
University of Cincinnati Medical Center
Cincinnati, OH
513-584-8900

MetroHealth Medical Center
Cancer Care Center Melanoma Program
2500 MetroHealth Drive
Cleveland, Ohio 44109

(216) 778-4795 (Surgical Oncology)
(216) 778-5802 (Medical Oncology)
The Melanoma Clinic at the Cleveland Clinic Taussig Cancer Center
Cleveland, OH
http://www.clevelandclinic.org/cancer

The Melanoma Center At The James
Ohio State University
Columbus, OH
614-293-7531 (medical)
614-293-5644 (surgical)

Wagner & Associates Plastic and Reconstructive Surgery Consultants of Indiana
Indianapolis, IN
317-621-2520
317-621-2580

Interdisciplinary Melanoma Clinic
Indiana University Cancer Center, Indiana University Medical Center
Indianapolis, IN
317-278-7449

Cardinal Bernardin Cancer Center
Loyola University Chicago
Chicago, IL
708-327-2078
http://www.luhs.org

Pigmented Lesion Center
Rush University
Chicago, IL
312-563-2321
http://www.rush.edu/rumc/page-R12605.html

Melanoma and Pigmented Lesion Center
University of Minnesota
Minneapolis, MN
612-625-5199

Multidisciplinary Melanoma Group
St. Louis University Health Sciences Center/SLUCare
St. Louis, MO
314-268-5320

Seems the prior link was not updated, try this one.

http://www.uihealthcare.org/Melanoma/

Seems the prior link was not updated, try this one.

http://www.uihealthcare.org/Melanoma/

Seems the prior link was not updated, try this one.

http://www.uihealthcare.org/Melanoma/

Hi, I completed all 4 doses of the Yervoy and had nothing more than a little itching which I got some topical creme for. I also had a cyber knife procedure between the 3rd and 4th infusion to zap a lesion on the brain that popped up 6 mos after a lund met was surgically removed. My last Cat scan showed the tumor shrinking. Hoping the combination of the radiation and the Yervoy stimulated an anti immune reaction and abscopal effect kicks in. That cyber knife-radio static surgery is pretty incredible and away from a couple of screw marks on my temples I felt nothing. Was reading the NY Post while wearing the halo and waiting fr the procedure. See Dr Jed Wolchucks paper on the Memorial Sloan Kettering web site.. Watch for diarrhea carefully as Yervoy can cause that and the Dr will likely give your Dad a much stronger med than over the counter things like immodium. I had my last infusion a few days prior to starting a new job and no problem.. Not everybody gets a bad reaction to Yervoy so monitor carefully and cross your fingers. I go for body scan then brain scans in a few weeks and hopeful nothing new is reported. I wish your Dad the best of luck and am hopeful it’s smooth sailing for him. Whenever you start to worry make a mental list of things you are thankful for and the scary feeling will pass.

Hi, I completed all 4 doses of the Yervoy and had nothing more than a little itching which I got some topical creme for. I also had a cyber knife procedure between the 3rd and 4th infusion to zap a lesion on the brain that popped up 6 mos after a lund met was surgically removed. My last Cat scan showed the tumor shrinking. Hoping the combination of the radiation and the Yervoy stimulated an anti immune reaction and abscopal effect kicks in. That cyber knife-radio static surgery is pretty incredible and away from a couple of screw marks on my temples I felt nothing. Was reading the NY Post while wearing the halo and waiting fr the procedure. See Dr Jed Wolchucks paper on the Memorial Sloan Kettering web site.. Watch for diarrhea carefully as Yervoy can cause that and the Dr will likely give your Dad a much stronger med than over the counter things like immodium. I had my last infusion a few days prior to starting a new job and no problem.. Not everybody gets a bad reaction to Yervoy so monitor carefully and cross your fingers. I go for body scan then brain scans in a few weeks and hopeful nothing new is reported. I wish your Dad the best of luck and am hopeful it’s smooth sailing for him. Whenever you start to worry make a mental list of things you are thankful for and the scary feeling will pass.

Hi, I completed all 4 doses of the Yervoy and had nothing more than a little itching which I got some topical creme for. I also had a cyber knife procedure between the 3rd and 4th infusion to zap a lesion on the brain that popped up 6 mos after a lund met was surgically removed. My last Cat scan showed the tumor shrinking. Hoping the combination of the radiation and the Yervoy stimulated an anti immune reaction and abscopal effect kicks in. That cyber knife-radio static surgery is pretty incredible and away from a couple of screw marks on my temples I felt nothing. Was reading the NY Post while wearing the halo and waiting fr the procedure. See Dr Jed Wolchucks paper on the Memorial Sloan Kettering web site.. Watch for diarrhea carefully as Yervoy can cause that and the Dr will likely give your Dad a much stronger med than over the counter things like immodium. I had my last infusion a few days prior to starting a new job and no problem.. Not everybody gets a bad reaction to Yervoy so monitor carefully and cross your fingers. I go for body scan then brain scans in a few weeks and hopeful nothing new is reported. I wish your Dad the best of luck and am hopeful it’s smooth sailing for him. Whenever you start to worry make a mental list of things you are thankful for and the scary feeling will pass.