› Forums › General Melanoma Community › Yervoy users past & present
- This topic has 15 replies, 4 voices, and was last updated 11 years, 1 month ago by
Mat.
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- January 20, 2015 at 2:44 pm
Ken is going to have his 4th dose of Yervoy tomorrow. How long was it before you had a scan? From my understanding it is really the one taken 3 months after that they determine a responce? True, False, your experiences. Ken went into this with resected disease, but the node was bleeding and the size of a fist. Thanks for any and all help. They are also talking about possible maintanance doses?
Jewel
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- January 20, 2015 at 4:58 pm
Hello Jewel,
My husband started Yervoy clinical trial with GM-CSF in March 2011. He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level. We watched the sub q's get smaller and disappear as well as the unresectable one. He also had lesions in his liver and lungs and was Stage IV. After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years. He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.
We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working. You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks. We also watched his LDH levels return to normal and they were very high.
My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.
Here is hoping that Yervoy works for him.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2015 at 4:58 pm
Hello Jewel,
My husband started Yervoy clinical trial with GM-CSF in March 2011. He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level. We watched the sub q's get smaller and disappear as well as the unresectable one. He also had lesions in his liver and lungs and was Stage IV. After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years. He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.
We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working. You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks. We also watched his LDH levels return to normal and they were very high.
My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.
Here is hoping that Yervoy works for him.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2015 at 4:58 pm
Hello Jewel,
My husband started Yervoy clinical trial with GM-CSF in March 2011. He had some sub q's and an unresectable tumour pushing on the spine up at the C1-C2 level. We watched the sub q's get smaller and disappear as well as the unresectable one. He also had lesions in his liver and lungs and was Stage IV. After the initial 4 treatments he went onto maintenance doses and remained on it for over 2 years. He has been NED since Oct. 2012 but didn't go off of the treatment until Dec. 2013.
We knew the Yervoy was working as we watched it work and at about 16 weeks or so his eyebrows, mustache and beard hair turned white which made the onc so happy as he said more proof it was working. You can read about him on his profile page if you would like. I believe the scans happen about every 12 weeks. We also watched his LDH levels return to normal and they were very high.
My husband also takes Vitamin D3 (which is actually a hormone) daily and did through his treatment as the Vitamin D3 levels where we live are very low in most as we don't have enough sunshine.
Here is hoping that Yervoy works for him.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2015 at 9:47 pm
Jewel, my recollection is that 16 to 24 weeks following the last infusion is the sweet spot for the typical Ipi response.
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- January 21, 2015 at 1:24 am
Hi Jewel,
I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.
My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.
My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.
My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.
– Paul
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- January 21, 2015 at 1:24 am
Hi Jewel,
I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.
My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.
My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.
My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.
– Paul
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- January 21, 2015 at 1:24 am
Hi Jewel,
I just finished Yervoy in November. My oncologist suggested I not have the fourth infusion because my pituitary became inflamed and stopped functioning properly.
My first infusion was on 9/24 and I had a follow-up CT on 12/30, so yeah, just a little over 3 months from the onset.
My Dr. and I have not discussed maintenance doses. From what I have read, that may be outside standard-of-care and therefore not covered by some health insurance providers.
My CT results were encouraging. The multiple mets in my liver and lungs were unchanged from a scan from 9/8/14. Only a larger tumor in my gallbladder had increased, and I just had that resected this past Friday.
– Paul
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