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- This topic has 15 replies, 5 voices, and was last updated 8 years, 9 months ago by
DZnDef.
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- March 27, 2016 at 4:55 am
My husband just had another great CAT scan. Still NED! What is so wonderful is that 2 years ago, he was diagnosed with a small metastasis to his liver. He was in the interferon vs. ipi trial for stage 3C. He had 4 infusions of 10 mg ipi and had tolerated it reasonably well. He was removed from the clinical trial ( he was supposed to get 4 maintenence doses)., basically a clinical "failure". He then had microwave ablation surgery and then became NED. 2 years ago, we thought he only had months. Now we know he is a "durable responder". We are lucky.
What bothers me a bit, is when the study results come out, it will not reflect that the Yervoy worked. Also, it was a bit disappointing that after being followed so closely during the trial and giving at least 50 vials of blood, that he was dropped like a hot potato from the support from the clinical trial researchers. I think there is valueable information to be gleaned from him. It is really a shame for other melanoma patients. One of the reasons he joined a clinical trial was to help others.
Keep up the good fight. There is hope.
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- March 27, 2016 at 1:51 pm
Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html
One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy! Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c
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- March 27, 2016 at 1:51 pm
Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html
One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy! Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c
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- March 27, 2016 at 1:51 pm
Oh, Marianne! That is wonderful! So, very glad that the ablation was a sucess…though I bet ipi played a positive role as well….just not in the time frame within which it was "supposed" to! Over the past couple of years…bit by bit….folks have been proving the reality of "delayed" responses to immunotherapy to reasearchers…until "Give the patient time!"….has become a refrain of many. Here is just one more recent example of that when melanoma big dogs reviewed the results from 655 patients treated with pembro: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-big-dogs-review-results-of-pts.html
One poor soul "failed" the nivo trial I was in back in early 2010/2011 by developing lesions while on the treatment. He was removed from trial per its stated protocol. However, while Weber was looking for a different treatment option…the patient was rescanned and the lesions were shrinking. Eventually…his lesions resolved…with no further treatment!. Now…I realize he was a lucky bug. Progression is all too real for many. But this certainly speaks to your point regarding the necessity of folllow-up when patients are in clinical trials! How we respond, when we respond, whether we respond sequentially (maybe ipi followed by ablation…was the magic for your husband), duration of reponse…etc, etc….is incredibly important stuff. For researchers to fail in the area of follow-up, and the lack of consistency in clinical trials generally, drives me crazy! Here's a piece I wrote that addresses a few of the issues I see as clinical trial problems: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-problem-with-clinical-trials.html
For all his lack of trial follow-up…your husband is still teaching others and leading the way! Congratulations and thanks for sharing! Love, c
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- March 28, 2016 at 2:15 pm
Hi Marianne,
I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health.
Ashley
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- March 28, 2016 at 2:15 pm
Hi Marianne,
I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health.
Ashley
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- March 28, 2016 at 2:15 pm
Hi Marianne,
I'm glad your husband is doing so well. I totally agree with everything you stated concerning the final results and losing support once you're kicked off a trial. I was on the ipi/nivo trial and made it through three of the four combo infusions. I was taken off due to grade 3 diarrhea but continued on with Opdivo. I was given NED status about 7 months after being kicked off the trial. I know many people are afraid of going on a trial. I agree that it's too bad they can't see everything in the published research. Best of luck for continued health.
Ashley
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