› Forums › General Melanoma Community › Yervoy Rollcall – Part 2
- This topic has 20 replies, 8 voices, and was last updated 14 years, 3 months ago by
Lisa13.
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- September 5, 2011 at 11:55 pm
It's been awhile since we've done a rollcall for Yervoy/ipi, so I'd love to hear from the people who were complete/partial and non-responders. There are many of us who have recently stopped or started treatment, so I'd like to see how everyone is doing. There's been a few postings in the past few days of people failing on this treatment and I'm getting worried and needing some ipi success stories pronto!
I'd also be interested to hear the non-responders next line of defense, especially from BRAF negative people.
It's been awhile since we've done a rollcall for Yervoy/ipi, so I'd love to hear from the people who were complete/partial and non-responders. There are many of us who have recently stopped or started treatment, so I'd like to see how everyone is doing. There's been a few postings in the past few days of people failing on this treatment and I'm getting worried and needing some ipi success stories pronto!
I'd also be interested to hear the non-responders next line of defense, especially from BRAF negative people.
Best of luck to each and everyone of us fighting this battle
Lisa – Stage 4
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- September 6, 2011 at 1:02 pm
October 2010 – Thinking I was going to get a good report in October when I went back to the surgeon after my scans were done again, I found out that I have another lesion under the last skin graft area and this one is against the spine so it is inoperable. Plus I had mets in my lungs and liver.
December 2010 – I tried for the clinical trial for Oncovex and was refused because the size of the lesion in my liver was to large.
March 2011 – I started with the Ipi Clinical Trial with the GM-CSF. I am receiving the 10mg/kg dosage. After 12 weeks I received my scans and the good news my disease was overall 39% regression as of May 2011.
May 2011 am now in the maintenance phase of the clinical trial with the GM-CSF stillgetting my self injections every 3 weeks that I take 2 weeks and then 1 week off as before with the Ipi infusion 12 weeks after the last one. August 2011 scans at the end of 24 weeks since I started and an overall regression of 56% so I get scans in 6 weeks.
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- September 6, 2011 at 1:02 pm
October 2010 – Thinking I was going to get a good report in October when I went back to the surgeon after my scans were done again, I found out that I have another lesion under the last skin graft area and this one is against the spine so it is inoperable. Plus I had mets in my lungs and liver.
December 2010 – I tried for the clinical trial for Oncovex and was refused because the size of the lesion in my liver was to large.
March 2011 – I started with the Ipi Clinical Trial with the GM-CSF. I am receiving the 10mg/kg dosage. After 12 weeks I received my scans and the good news my disease was overall 39% regression as of May 2011.
May 2011 am now in the maintenance phase of the clinical trial with the GM-CSF stillgetting my self injections every 3 weeks that I take 2 weeks and then 1 week off as before with the Ipi infusion 12 weeks after the last one. August 2011 scans at the end of 24 weeks since I started and an overall regression of 56% so I get scans in 6 weeks.
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- September 6, 2011 at 2:40 pm
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- September 6, 2011 at 2:40 pm
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- September 6, 2011 at 11:37 pm
Hi Lisa,
I was diagnosed stage 3C 11/07, had an LND to the right axillary, radiation and a clinical trial of Yervoy (10 mg/kg) along with vaccines. I was almost ready to get the fifth infusion when the side effects from Yervoy gave me hypophysitis (swelling of the pituitary gland). I've been on a hormone replacement drug since 11/08.
I entered the trial with resected melanoma. Based on comparisons of blood work my oncologist said Yervoy boosted my immune system at least 5 times over baseline. He sees this response in 10-20% of patients.
Being on a steroid this long, while it helps the endocrine system, also suppresses the immune system allowing opportunistic bacterias, etc. to enter the body. Twice in the last 5.5 months I've had cellulitis, a bacterial infection under the skin which can become potentially serious. The first time I was in ICU for several hours due to low blood pressure.
God Bless,
Jim M.
NED: 3 years, 10 months
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- September 6, 2011 at 11:37 pm
Hi Lisa,
I was diagnosed stage 3C 11/07, had an LND to the right axillary, radiation and a clinical trial of Yervoy (10 mg/kg) along with vaccines. I was almost ready to get the fifth infusion when the side effects from Yervoy gave me hypophysitis (swelling of the pituitary gland). I've been on a hormone replacement drug since 11/08.
I entered the trial with resected melanoma. Based on comparisons of blood work my oncologist said Yervoy boosted my immune system at least 5 times over baseline. He sees this response in 10-20% of patients.
Being on a steroid this long, while it helps the endocrine system, also suppresses the immune system allowing opportunistic bacterias, etc. to enter the body. Twice in the last 5.5 months I've had cellulitis, a bacterial infection under the skin which can become potentially serious. The first time I was in ICU for several hours due to low blood pressure.
God Bless,
Jim M.
NED: 3 years, 10 months
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- September 7, 2011 at 6:51 pm
Lisa,
I did 4 ipi rounds from late May 2011 to late July 2011.
Very few side effects. Thought I was a responder, due to INCREASED neck nodes.
Within 2 weeks of ending ipi, began BRAF (sorry, I'm a positive). In conjunction with ipi, BRAF started working within 2 days.
So, am I a late ipi responder, or only responding to BRAF? No one can answer that clearly.
Not sure if that is helpful, but that was my experience.
TracyLee
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- September 7, 2011 at 10:02 pm
Hi, finished ipi 17 weeks ago, thought i was responding, then everyhing stopped.
due to size & location, it is inoperable, & braf -, started IL-2 yesterday.
fighting the good fight, docs say if this doesn't work, anti-pdi (sorry if that's wrong, getting a littlle loopy here) will be good option.
take care,
karen
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- September 7, 2011 at 10:02 pm
Hi, finished ipi 17 weeks ago, thought i was responding, then everyhing stopped.
due to size & location, it is inoperable, & braf -, started IL-2 yesterday.
fighting the good fight, docs say if this doesn't work, anti-pdi (sorry if that's wrong, getting a littlle loopy here) will be good option.
take care,
karen
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- September 10, 2011 at 12:32 am
Thanks everyone for your comments. I watched a webinar with Dr. Wolchuk (spelling) which made me feel hopeful. He was talking about a patient who had numerous mets in his liver and after 4 years, he's still in remission. I know there's not alot of people who completely respond with this drug, but there are still people who do and I try to focus on that. I think the hardest part is not knowing if this is working until the end of October. If it's not, I'm sitting here for weeks without treatment and then I begin to imagine all kinds of horrible things. I absolutely refuse to believe that I won't beat this thing!
I've been having a rough couple of days thinking about what I'll do if this doesn't work on my lung mets. There is always IL-2 and Anti-PD1 since I'm BRAF negative. I just have to keep believing that ipi will be my success story.
Third round in 12 days.
Lisa
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- September 10, 2011 at 1:17 am
Lisa, did the webinar give any clues as to why the patient responded so well and is still in remission? I think that trying to find out why someone responds to any treatment is an important thing to consider.
I agree that waiting to know if is working is not easy. However, you might get some clues with how you are feeling in general. For example, do you feel better or worse than you did a couple months ago?
I fully agree that one should absolutely refuse to believe that one won't beat this. The mind has a powerful influence on our wellbeing. If you haven't tried meditation, I think that it would be good thing to consider doing. I feel that it helps to give us a sense of inner peace, and therefore reduces anxiety and allows one to feel better in general.
Take care
Frank from Australia
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- September 10, 2011 at 1:53 am
Hi Frank,
The webinar didn't give any clues as to why he responded so well. In his initial scan, he had more tumours and the previous ones had grown. Over time, they kept shrinking until they were no longer there. Many complete responders can keep the cancer in remission for years, but there is no data beyond 4 years because these people are still being monitored. I don't even think they know why someone responds and others don't. In 1 trial of 675 people, 70% of them had 2 or more organ mets and only 10% responded. The didn't really have the data for the patients who had sub q's or 1 organ involved.
I've never had symptoms as my nodules are all under 1cm (except 1) so I feel like I don't have cancer. My blood work is all normal and my LDH is still in the normal range. During my next set of bloodwork, I'll see if my lymphocytes have doubled, which is a good indication if the ipi is working.
For the most part, I'm very positive and my daughter keeps me busy most days. We just moved into a new house last week, so we've been really busy putting it all together. Life goes on!
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- September 10, 2011 at 1:53 am
Hi Frank,
The webinar didn't give any clues as to why he responded so well. In his initial scan, he had more tumours and the previous ones had grown. Over time, they kept shrinking until they were no longer there. Many complete responders can keep the cancer in remission for years, but there is no data beyond 4 years because these people are still being monitored. I don't even think they know why someone responds and others don't. In 1 trial of 675 people, 70% of them had 2 or more organ mets and only 10% responded. The didn't really have the data for the patients who had sub q's or 1 organ involved.
I've never had symptoms as my nodules are all under 1cm (except 1) so I feel like I don't have cancer. My blood work is all normal and my LDH is still in the normal range. During my next set of bloodwork, I'll see if my lymphocytes have doubled, which is a good indication if the ipi is working.
For the most part, I'm very positive and my daughter keeps me busy most days. We just moved into a new house last week, so we've been really busy putting it all together. Life goes on!
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- September 10, 2011 at 1:17 am
Lisa, did the webinar give any clues as to why the patient responded so well and is still in remission? I think that trying to find out why someone responds to any treatment is an important thing to consider.
I agree that waiting to know if is working is not easy. However, you might get some clues with how you are feeling in general. For example, do you feel better or worse than you did a couple months ago?
I fully agree that one should absolutely refuse to believe that one won't beat this. The mind has a powerful influence on our wellbeing. If you haven't tried meditation, I think that it would be good thing to consider doing. I feel that it helps to give us a sense of inner peace, and therefore reduces anxiety and allows one to feel better in general.
Take care
Frank from Australia
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- September 10, 2011 at 12:32 am
Thanks everyone for your comments. I watched a webinar with Dr. Wolchuk (spelling) which made me feel hopeful. He was talking about a patient who had numerous mets in his liver and after 4 years, he's still in remission. I know there's not alot of people who completely respond with this drug, but there are still people who do and I try to focus on that. I think the hardest part is not knowing if this is working until the end of October. If it's not, I'm sitting here for weeks without treatment and then I begin to imagine all kinds of horrible things. I absolutely refuse to believe that I won't beat this thing!
I've been having a rough couple of days thinking about what I'll do if this doesn't work on my lung mets. There is always IL-2 and Anti-PD1 since I'm BRAF negative. I just have to keep believing that ipi will be my success story.
Third round in 12 days.
Lisa
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- September 7, 2011 at 6:51 pm
Lisa,
I did 4 ipi rounds from late May 2011 to late July 2011.
Very few side effects. Thought I was a responder, due to INCREASED neck nodes.
Within 2 weeks of ending ipi, began BRAF (sorry, I'm a positive). In conjunction with ipi, BRAF started working within 2 days.
So, am I a late ipi responder, or only responding to BRAF? No one can answer that clearly.
Not sure if that is helpful, but that was my experience.
TracyLee
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