› Forums › General Melanoma Community › OM stage 4: any experience with ipi (Yervoy)?
- This topic has 9 replies, 3 voices, and was last updated 11 years, 2 months ago by
GaPeachOMcaregiver.
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- January 15, 2014 at 9:21 am
Hi Team,
My mother is meeting with Docs tomorrow (Jan 16) with the option to start ipi / Yervoy. She is 73 and already pretty weak and tired and in bed most of the time. So she is worried about side-effects and "what's the point?".
She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too. So far this treatment is the only option being offered, or we let nature/cancer take it's own course.
We would love to hear from anyone – especially OM – with ipi experiences.
Much Appreciated & Best of Luck!
James
- Replies
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- January 15, 2014 at 7:11 pm
Hi James,
I saw your post on the main MPIP forum, but wasn't sure if you would still be checking replies there. First, I'm sorry about your mom. I'm happy to share my experience, but I'm not sure it will be helpful.
My father (76) passed away from OM last fall, also metastasized to liver and bones. We were focused on clinical trials, but tried ipi while we were waiting for an anti-PD1 trial opening. He was still feeling quite good (mobile, living alone) at the time. He got a rash about ten days after the first infusion of ipi; it got worse, he couldn't have the second infusion, and he started prednisone after a few weeks to treat the rash. After he came off the prednisone, we started the lambrolizumab trial. Neither option worked for him. After he was kicked out of the anti-PD1 trial due to liver failure, his "what's the point" point came when he was offered standard chemo; we declined.
I haven't kept up with the literature in the last several months, but at the time, there was no research showing that ipi or anti-PD1 helped OM. Nor was there anything showing the opposite. We tried anti-PD1 because it was available, had great stats for cutaneous melanoma, was supposed to work more quickly than ipi if it worked, and had fairly low side effects. In retrospect, I sort of wish we had gone for the selumetinib trial we had also been considering, since a few months later, it was reported as the first drug that has been shown to make a difference in stage IV OM. If there is a selumetinib or next-generation MEK inhibitor trial near you, and your mother is healthy enough to enroll, you might consider it.
You might check the MIF forums too if you haven't already. Eg:
And I was following this thread for a long time; third-hand reports of an ongoing trial that has been "surprisingly effective for ocular melanoma patients":
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242
Again, my research is all several months old, I'm afraid. My best wishes to your family. For more on personal experiences with ipi side effects, I would try a search in the main MPIP forum.
By the way, I don't know if you are already seeing a melanoma specialist, but I found that our general oncologist had almost nothing to offer us, including drug options, useful information, or hope. It wasn't until we paid out of pocket for a melanoma specialist that my dad felt we had a fighting chance.
Tami
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- January 15, 2014 at 7:11 pm
Hi James,
I saw your post on the main MPIP forum, but wasn't sure if you would still be checking replies there. First, I'm sorry about your mom. I'm happy to share my experience, but I'm not sure it will be helpful.
My father (76) passed away from OM last fall, also metastasized to liver and bones. We were focused on clinical trials, but tried ipi while we were waiting for an anti-PD1 trial opening. He was still feeling quite good (mobile, living alone) at the time. He got a rash about ten days after the first infusion of ipi; it got worse, he couldn't have the second infusion, and he started prednisone after a few weeks to treat the rash. After he came off the prednisone, we started the lambrolizumab trial. Neither option worked for him. After he was kicked out of the anti-PD1 trial due to liver failure, his "what's the point" point came when he was offered standard chemo; we declined.
I haven't kept up with the literature in the last several months, but at the time, there was no research showing that ipi or anti-PD1 helped OM. Nor was there anything showing the opposite. We tried anti-PD1 because it was available, had great stats for cutaneous melanoma, was supposed to work more quickly than ipi if it worked, and had fairly low side effects. In retrospect, I sort of wish we had gone for the selumetinib trial we had also been considering, since a few months later, it was reported as the first drug that has been shown to make a difference in stage IV OM. If there is a selumetinib or next-generation MEK inhibitor trial near you, and your mother is healthy enough to enroll, you might consider it.
You might check the MIF forums too if you haven't already. Eg:
And I was following this thread for a long time; third-hand reports of an ongoing trial that has been "surprisingly effective for ocular melanoma patients":
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242
Again, my research is all several months old, I'm afraid. My best wishes to your family. For more on personal experiences with ipi side effects, I would try a search in the main MPIP forum.
By the way, I don't know if you are already seeing a melanoma specialist, but I found that our general oncologist had almost nothing to offer us, including drug options, useful information, or hope. It wasn't until we paid out of pocket for a melanoma specialist that my dad felt we had a fighting chance.
Tami
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- January 17, 2014 at 3:55 pm
Hi James,
I've had two courses Yervoy. I have mets in my liver, abdomen, and peritoneum and also have an enlarged paratracheal node. I've been pretty much stable since early 2011. I did have an existing lesion cyberknifed (target radiation) halfway through my second course of Yervoy. I have had NOTHING NEW since Feb., 2011.
How much liver involvement does she have? I'm wondering if she should/could do sirspheres (direct liver treatment) and then do Yervoy. Yervoy sometimes takes a while to show that it's working. For me, at first, it showed new lesions and enlarging existing ones, but after 3 months things settled down with a couple liver lesions and things have stayed there since.
Contact Dr. Sato in Philadelphia. They will work with your oncologist if you cannot travel to see him. He is the "guru" ….he has the most experience with metastatic OM patience. His nurse, Renee, is WONDERFUL and gets back to you right away. Here is her address:
Renee M. Zalinsky, RN, OCN, Metastatic Uveal Melanoma Navigator/Senior Cancer Care Coordinator, Jefferson Kimmel Cancer Center Networf 1015 Chestnut St., Suite 622, Philadelphia, PA 19107, Direct Phone 215-955-3158, Fax 215-955-1020…………E-Mail: [email protected]
Best wishes,
Nan
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- February 21, 2014 at 5:04 pm
My dad has taken 4 infusion of YerVoy without any adverse side effects. One week after his 4th infusion he developed continuous hiccups that lasted for 16 days. They finally stopped and he is scheduled for scans next week. I will report results when I have that information.
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- February 21, 2014 at 5:04 pm
My dad has taken 4 infusion of YerVoy without any adverse side effects. One week after his 4th infusion he developed continuous hiccups that lasted for 16 days. They finally stopped and he is scheduled for scans next week. I will report results when I have that information.
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- February 21, 2014 at 5:04 pm
My dad has taken 4 infusion of YerVoy without any adverse side effects. One week after his 4th infusion he developed continuous hiccups that lasted for 16 days. They finally stopped and he is scheduled for scans next week. I will report results when I have that information.
-
- January 17, 2014 at 3:55 pm
Hi James,
I've had two courses Yervoy. I have mets in my liver, abdomen, and peritoneum and also have an enlarged paratracheal node. I've been pretty much stable since early 2011. I did have an existing lesion cyberknifed (target radiation) halfway through my second course of Yervoy. I have had NOTHING NEW since Feb., 2011.
How much liver involvement does she have? I'm wondering if she should/could do sirspheres (direct liver treatment) and then do Yervoy. Yervoy sometimes takes a while to show that it's working. For me, at first, it showed new lesions and enlarging existing ones, but after 3 months things settled down with a couple liver lesions and things have stayed there since.
Contact Dr. Sato in Philadelphia. They will work with your oncologist if you cannot travel to see him. He is the "guru" ….he has the most experience with metastatic OM patience. His nurse, Renee, is WONDERFUL and gets back to you right away. Here is her address:
Renee M. Zalinsky, RN, OCN, Metastatic Uveal Melanoma Navigator/Senior Cancer Care Coordinator, Jefferson Kimmel Cancer Center Networf 1015 Chestnut St., Suite 622, Philadelphia, PA 19107, Direct Phone 215-955-3158, Fax 215-955-1020…………E-Mail: [email protected]
Best wishes,
Nan
-
- January 17, 2014 at 3:55 pm
Hi James,
I've had two courses Yervoy. I have mets in my liver, abdomen, and peritoneum and also have an enlarged paratracheal node. I've been pretty much stable since early 2011. I did have an existing lesion cyberknifed (target radiation) halfway through my second course of Yervoy. I have had NOTHING NEW since Feb., 2011.
How much liver involvement does she have? I'm wondering if she should/could do sirspheres (direct liver treatment) and then do Yervoy. Yervoy sometimes takes a while to show that it's working. For me, at first, it showed new lesions and enlarging existing ones, but after 3 months things settled down with a couple liver lesions and things have stayed there since.
Contact Dr. Sato in Philadelphia. They will work with your oncologist if you cannot travel to see him. He is the "guru" ….he has the most experience with metastatic OM patience. His nurse, Renee, is WONDERFUL and gets back to you right away. Here is her address:
Renee M. Zalinsky, RN, OCN, Metastatic Uveal Melanoma Navigator/Senior Cancer Care Coordinator, Jefferson Kimmel Cancer Center Networf 1015 Chestnut St., Suite 622, Philadelphia, PA 19107, Direct Phone 215-955-3158, Fax 215-955-1020…………E-Mail: [email protected]
Best wishes,
Nan
-
- January 15, 2014 at 7:11 pm
Hi James,
I saw your post on the main MPIP forum, but wasn't sure if you would still be checking replies there. First, I'm sorry about your mom. I'm happy to share my experience, but I'm not sure it will be helpful.
My father (76) passed away from OM last fall, also metastasized to liver and bones. We were focused on clinical trials, but tried ipi while we were waiting for an anti-PD1 trial opening. He was still feeling quite good (mobile, living alone) at the time. He got a rash about ten days after the first infusion of ipi; it got worse, he couldn't have the second infusion, and he started prednisone after a few weeks to treat the rash. After he came off the prednisone, we started the lambrolizumab trial. Neither option worked for him. After he was kicked out of the anti-PD1 trial due to liver failure, his "what's the point" point came when he was offered standard chemo; we declined.
I haven't kept up with the literature in the last several months, but at the time, there was no research showing that ipi or anti-PD1 helped OM. Nor was there anything showing the opposite. We tried anti-PD1 because it was available, had great stats for cutaneous melanoma, was supposed to work more quickly than ipi if it worked, and had fairly low side effects. In retrospect, I sort of wish we had gone for the selumetinib trial we had also been considering, since a few months later, it was reported as the first drug that has been shown to make a difference in stage IV OM. If there is a selumetinib or next-generation MEK inhibitor trial near you, and your mother is healthy enough to enroll, you might consider it.
You might check the MIF forums too if you haven't already. Eg:
And I was following this thread for a long time; third-hand reports of an ongoing trial that has been "surprisingly effective for ocular melanoma patients":
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242
Again, my research is all several months old, I'm afraid. My best wishes to your family. For more on personal experiences with ipi side effects, I would try a search in the main MPIP forum.
By the way, I don't know if you are already seeing a melanoma specialist, but I found that our general oncologist had almost nothing to offer us, including drug options, useful information, or hope. It wasn't until we paid out of pocket for a melanoma specialist that my dad felt we had a fighting chance.
Tami
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