› Forums › General Melanoma Community › Metastized melanoma with Crohns Disease
- This topic has 21 replies, 5 voices, and was last updated 8 years, 11 months ago by
Roncole11.
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- October 15, 2014 at 6:42 pm
I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.
Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.
- Replies
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- October 15, 2014 at 9:40 pm
I assume if you cannot take Yervoy then other immunotherapies like PD1 are also not a viable treatment?
That means one possibility are the gene targeted therapies. Like BRAF if you are BRAF positive. Also the trials for other gene mutations.
Another possibility is this trial at Mayo which is chemo based. Here is a link to a post and responses about it:
I'm not sure what else might help but hopefully others will know.
Good luck to you.
Artie
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- October 15, 2014 at 9:40 pm
I assume if you cannot take Yervoy then other immunotherapies like PD1 are also not a viable treatment?
That means one possibility are the gene targeted therapies. Like BRAF if you are BRAF positive. Also the trials for other gene mutations.
Another possibility is this trial at Mayo which is chemo based. Here is a link to a post and responses about it:
I'm not sure what else might help but hopefully others will know.
Good luck to you.
Artie
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- October 16, 2014 at 4:03 pm
If we click the search tab and search for Crohn's there are some that come up.
Here is a link to a 2012 post about a person that had Crohn's and melanoma:
Here is one from Sept 2014 that mentions it too:
I didn't see anything that stood out but maybe you can see something helpful in there.
Also although you don't have the BRAF mutation that just means you can't do the zelboraf or tafinlar which unfortunately are the most developed gene targeted meds for melanoma. However there are other medicines in clinical trials that focus on different mutations that you might have. Clinical trials can be found at http://www.clinicaltrials.gov
I would have thought John Hopkins would have been more help. They seem to have a good melanoma reputation. You might want to try at least calling some place like Dr. Wolchok's office at MSK (Memorial Sloan Kettering) or Dr. Weber's office at Moffit or maybe MDA (MD Anderson) or maybe even Sarah Cannon. Maybe some doctor has a good idea about how you can fight this. I know for a fact Sarah Cannon last April tested me for some gene mutation and had some pill for a clinical trial but I finally got into a PD1 trial instead. But that means there are other medicines they are trying for other gene mutations you just have to find the trial and have that mutation. Some place like I mentioned or maybe others have to be involved in those trials.
Artie
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- October 16, 2014 at 4:03 pm
If we click the search tab and search for Crohn's there are some that come up.
Here is a link to a 2012 post about a person that had Crohn's and melanoma:
Here is one from Sept 2014 that mentions it too:
I didn't see anything that stood out but maybe you can see something helpful in there.
Also although you don't have the BRAF mutation that just means you can't do the zelboraf or tafinlar which unfortunately are the most developed gene targeted meds for melanoma. However there are other medicines in clinical trials that focus on different mutations that you might have. Clinical trials can be found at http://www.clinicaltrials.gov
I would have thought John Hopkins would have been more help. They seem to have a good melanoma reputation. You might want to try at least calling some place like Dr. Wolchok's office at MSK (Memorial Sloan Kettering) or Dr. Weber's office at Moffit or maybe MDA (MD Anderson) or maybe even Sarah Cannon. Maybe some doctor has a good idea about how you can fight this. I know for a fact Sarah Cannon last April tested me for some gene mutation and had some pill for a clinical trial but I finally got into a PD1 trial instead. But that means there are other medicines they are trying for other gene mutations you just have to find the trial and have that mutation. Some place like I mentioned or maybe others have to be involved in those trials.
Artie
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- October 16, 2014 at 4:03 pm
If we click the search tab and search for Crohn's there are some that come up.
Here is a link to a 2012 post about a person that had Crohn's and melanoma:
Here is one from Sept 2014 that mentions it too:
I didn't see anything that stood out but maybe you can see something helpful in there.
Also although you don't have the BRAF mutation that just means you can't do the zelboraf or tafinlar which unfortunately are the most developed gene targeted meds for melanoma. However there are other medicines in clinical trials that focus on different mutations that you might have. Clinical trials can be found at http://www.clinicaltrials.gov
I would have thought John Hopkins would have been more help. They seem to have a good melanoma reputation. You might want to try at least calling some place like Dr. Wolchok's office at MSK (Memorial Sloan Kettering) or Dr. Weber's office at Moffit or maybe MDA (MD Anderson) or maybe even Sarah Cannon. Maybe some doctor has a good idea about how you can fight this. I know for a fact Sarah Cannon last April tested me for some gene mutation and had some pill for a clinical trial but I finally got into a PD1 trial instead. But that means there are other medicines they are trying for other gene mutations you just have to find the trial and have that mutation. Some place like I mentioned or maybe others have to be involved in those trials.
Artie
-
- October 15, 2014 at 9:40 pm
I assume if you cannot take Yervoy then other immunotherapies like PD1 are also not a viable treatment?
That means one possibility are the gene targeted therapies. Like BRAF if you are BRAF positive. Also the trials for other gene mutations.
Another possibility is this trial at Mayo which is chemo based. Here is a link to a post and responses about it:
I'm not sure what else might help but hopefully others will know.
Good luck to you.
Artie
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- October 16, 2014 at 10:50 am
I recall some posts from someone else here who had a preexisting autoimmune disorder (lupus, perhaps?) but with some persistence was able to work with her doctors, in consultation with Bristol-Myers Squibb, to get Yervoy. I think BMS took great interest in her case and she was one of the first people they were aware of in her situation. I also think she had a response to Yervoy without exacerbating the preexisting autoimmune disease. Sorry to be vague, maybe she still reads/posts here… I think her name is Mary or Mary Sue?
Joe
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- October 16, 2014 at 9:04 pm
Mary Sue is her name. Her MPIP title is MSUE5.
hER PROFILE AND CONTACT INFO IS AT: http://www.melanoma.org/community/profiles/msue5
Good luck.
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- October 16, 2014 at 9:04 pm
Mary Sue is her name. Her MPIP title is MSUE5.
hER PROFILE AND CONTACT INFO IS AT: http://www.melanoma.org/community/profiles/msue5
Good luck.
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- October 16, 2014 at 9:04 pm
Mary Sue is her name. Her MPIP title is MSUE5.
hER PROFILE AND CONTACT INFO IS AT: http://www.melanoma.org/community/profiles/msue5
Good luck.
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- October 16, 2014 at 10:50 am
I recall some posts from someone else here who had a preexisting autoimmune disorder (lupus, perhaps?) but with some persistence was able to work with her doctors, in consultation with Bristol-Myers Squibb, to get Yervoy. I think BMS took great interest in her case and she was one of the first people they were aware of in her situation. I also think she had a response to Yervoy without exacerbating the preexisting autoimmune disease. Sorry to be vague, maybe she still reads/posts here… I think her name is Mary or Mary Sue?
Joe
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- October 16, 2014 at 10:50 am
I recall some posts from someone else here who had a preexisting autoimmune disorder (lupus, perhaps?) but with some persistence was able to work with her doctors, in consultation with Bristol-Myers Squibb, to get Yervoy. I think BMS took great interest in her case and she was one of the first people they were aware of in her situation. I also think she had a response to Yervoy without exacerbating the preexisting autoimmune disease. Sorry to be vague, maybe she still reads/posts here… I think her name is Mary or Mary Sue?
Joe
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