› Forums › General Melanoma Community › IPI responders.
- This topic has 72 replies, 7 voices, and was last updated 9 years, 3 months ago by
WITom.
- Post
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- August 5, 2016 at 11:19 pm
My partner is stage IV, braf positive, no primary was found. Diagnosed August 2014, 2 years ago. She’s been on brafi combo and Keytruda, Responded to both, brafi for 12 mths with 98% tumour reduction. Pembrolizumab for 3 months, due to aggressive Mel in her bone marrow as a consequence of brafi resistance. Keytruda saved her life in January and got rid of all Mel from the bone marrow but not much else. She went back on the brafi 2 months ago, half dose due to side effects and got a mixed response, not enough response as mel has continued to progress, no longer on brafi. Had internal radiation for liver 3 weeks ago, hysterectomy 8 weeks ago, including removal of 2 masses (which were NOT Melanoma, but sarcoma!) Like many of you, been through it all.She starts IPI next week with radiation.
For those of you that have responded to IPI (be it partial or complete response,
I’m VERY interested in the following information:-Braf status
-Treatments pre IPI
-deposit areas
-know the Immunohistochemical
stains for melanocytes after biopsy. Eg. SMA s100, melan-a, HMB-45..We will continue to fight this insidious diease. Blessings to you all..
Thank you,
Regards
Liza
- Replies
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- August 6, 2016 at 8:09 am
Hi Liza – all the best to your partner.
You are not alone looking for patterns. I am not sure that you will find any.
I am an Ipi responder. One year NED so far. I am BRAF positive. Other than having my primary cut out (clear margins not achieved), Ipi was my first treatment. My delectable tumours (two, one 3 cm, one smaller) were in the lymph nodes located in my right armpit.
No immunohistochemmical stain data.
There is some very preliminary data that suggests that people who have strains of bifidobacterium in their gut response more to ipi. Your partner could take an over-the-counter probiotic. (I take BioKult, which has four strains of bifidobacterium.)
My side effects were trivial, although I often felt crap, until my fourth infusion. I had a building headache,and no appetite. Tell your partner not to ignore anything like this, as it was hypophysitis (inflammation of the pituitary gland) and it left me with no function in my anterior pituitary gland.
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- August 6, 2016 at 12:51 pm
Hi Moira, could you tell me where to find the data about bifidobacterium that you talked about above!!!Thanks Ed.
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- August 6, 2016 at 1:42 pm
Hey Edster! Moira may have other sources…but here are two articles and reviews regarding bifidobacterium:
For what it's worth. Celeste
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- August 6, 2016 at 1:42 pm
Hey Edster! Moira may have other sources…but here are two articles and reviews regarding bifidobacterium:
For what it's worth. Celeste
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- August 6, 2016 at 1:42 pm
Hey Edster! Moira may have other sources…but here are two articles and reviews regarding bifidobacterium:
For what it's worth. Celeste
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- August 6, 2016 at 12:51 pm
Hi Moira, could you tell me where to find the data about bifidobacterium that you talked about above!!!Thanks Ed.
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- August 6, 2016 at 12:51 pm
Hi Moira, could you tell me where to find the data about bifidobacterium that you talked about above!!!Thanks Ed.
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- August 6, 2016 at 11:10 pm
Moira
Anecdotally from our experience I think you make a good point about probiotics. My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck. After the G-tube was placed he started IPI and quickly went down hill from there. I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.
Thanks for posting-and thanks Bubbles for the follow up replies with the references.
Michelle
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- August 6, 2016 at 11:10 pm
Moira
Anecdotally from our experience I think you make a good point about probiotics. My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck. After the G-tube was placed he started IPI and quickly went down hill from there. I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.
Thanks for posting-and thanks Bubbles for the follow up replies with the references.
Michelle
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- August 6, 2016 at 11:10 pm
Moira
Anecdotally from our experience I think you make a good point about probiotics. My husband was doing ok until he ended up with a G-tube following surgery and radiation to his neck. After the G-tube was placed he started IPI and quickly went down hill from there. I think nutrition plays a larger role than thought before, and the Gtube sugar water with nutrients just doesn't cut it.
Thanks for posting-and thanks Bubbles for the follow up replies with the references.
Michelle
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- August 6, 2016 at 8:09 am
Hi Liza – all the best to your partner.
You are not alone looking for patterns. I am not sure that you will find any.
I am an Ipi responder. One year NED so far. I am BRAF positive. Other than having my primary cut out (clear margins not achieved), Ipi was my first treatment. My delectable tumours (two, one 3 cm, one smaller) were in the lymph nodes located in my right armpit.
No immunohistochemmical stain data.
There is some very preliminary data that suggests that people who have strains of bifidobacterium in their gut response more to ipi. Your partner could take an over-the-counter probiotic. (I take BioKult, which has four strains of bifidobacterium.)
My side effects were trivial, although I often felt crap, until my fourth infusion. I had a building headache,and no appetite. Tell your partner not to ignore anything like this, as it was hypophysitis (inflammation of the pituitary gland) and it left me with no function in my anterior pituitary gland.
-
- August 6, 2016 at 8:09 am
Hi Liza – all the best to your partner.
You are not alone looking for patterns. I am not sure that you will find any.
I am an Ipi responder. One year NED so far. I am BRAF positive. Other than having my primary cut out (clear margins not achieved), Ipi was my first treatment. My delectable tumours (two, one 3 cm, one smaller) were in the lymph nodes located in my right armpit.
No immunohistochemmical stain data.
There is some very preliminary data that suggests that people who have strains of bifidobacterium in their gut response more to ipi. Your partner could take an over-the-counter probiotic. (I take BioKult, which has four strains of bifidobacterium.)
My side effects were trivial, although I often felt crap, until my fourth infusion. I had a building headache,and no appetite. Tell your partner not to ignore anything like this, as it was hypophysitis (inflammation of the pituitary gland) and it left me with no function in my anterior pituitary gland.
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- August 6, 2016 at 1:54 pm
Hi Liza,
So sorry for what you and your partner are dealing with. Perhaps this will address the immunohistochemical question you are seeking answers for: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html
Regarding sequencing: We have learned that folks do much better with anti-PD1 FOLLOWED by ipi…with nivo then ipi providing a 41% response rate and ipi followed by nivo providing only a 20% response rate. Here is a link with three reports from ASCO 2016. One of which addresses that point specifically with an additional attached link. Another addresses location of tumors and response rates along with some more lab data (though this is mor specific to anti-PD1 than ipi…though I think similar results have been found).
Perhaps this info will help. There is a great deal more info on ipi on my blog if you are interested…just use the search bubble in the top left. I wish you well. Celeste
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- August 6, 2016 at 11:56 pm
Hi Celeste, Thanks for your reply and the links. My partner and peruse your site often, thank you for all your hard work..We’ve read about the ipi/nivo combo and the stats, but Onco feels the potential toxicities would be severe. Her first dose of ipi is this coming Tuesday (along with radiation) which from recent papers, shows a better result than ipo alone. I’ll keep an eye on the lymphocyte counts over the next weeks too, hopefully they’ll start to increase. My partner has responded to ALL her treatments, and we hope this tteatment is no exception.
Celeste, have you heard of the Carpets -A phase I study of the safety and immune effects of an escalating dose of Autologous GD2 Chimeric Antigen Receptor-expressing Peripheral blood T cells in patients with GD2-positive metastatic melanoma? We fit the criteria for this trial. I’ve been unable to find any papers, results on this trial from other countries. We’re in Australia.
This disease is so insidious, but we will continue the fight and stay positive, like all you brave folks..
Cheers
Liza -
- August 6, 2016 at 11:56 pm
Hi Celeste, Thanks for your reply and the links. My partner and peruse your site often, thank you for all your hard work..We’ve read about the ipi/nivo combo and the stats, but Onco feels the potential toxicities would be severe. Her first dose of ipi is this coming Tuesday (along with radiation) which from recent papers, shows a better result than ipo alone. I’ll keep an eye on the lymphocyte counts over the next weeks too, hopefully they’ll start to increase. My partner has responded to ALL her treatments, and we hope this tteatment is no exception.
Celeste, have you heard of the Carpets -A phase I study of the safety and immune effects of an escalating dose of Autologous GD2 Chimeric Antigen Receptor-expressing Peripheral blood T cells in patients with GD2-positive metastatic melanoma? We fit the criteria for this trial. I’ve been unable to find any papers, results on this trial from other countries. We’re in Australia.
This disease is so insidious, but we will continue the fight and stay positive, like all you brave folks..
Cheers
Liza -
- August 6, 2016 at 11:56 pm
Hi Celeste, Thanks for your reply and the links. My partner and peruse your site often, thank you for all your hard work..We’ve read about the ipi/nivo combo and the stats, but Onco feels the potential toxicities would be severe. Her first dose of ipi is this coming Tuesday (along with radiation) which from recent papers, shows a better result than ipo alone. I’ll keep an eye on the lymphocyte counts over the next weeks too, hopefully they’ll start to increase. My partner has responded to ALL her treatments, and we hope this tteatment is no exception.
Celeste, have you heard of the Carpets -A phase I study of the safety and immune effects of an escalating dose of Autologous GD2 Chimeric Antigen Receptor-expressing Peripheral blood T cells in patients with GD2-positive metastatic melanoma? We fit the criteria for this trial. I’ve been unable to find any papers, results on this trial from other countries. We’re in Australia.
This disease is so insidious, but we will continue the fight and stay positive, like all you brave folks..
Cheers
Liza -
- August 7, 2016 at 1:12 pm
Hi Liza, I have a couple of links for you. One is to the "Cancer research Institute or CRI" If the links works right there is a short description of Melanoma then all the different treatment options including trials in 'Adoptive Cell Therapy" or sometimes called car-t cells therapy. It kind of gives you an overview of all the different options for treatment at present. http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/melanoma The second link is to a video presentation on youtube about the research of Carl June on Engineered T-cells. The early research has been on blood born cancers like Leukemia. I hope you find this helpfull. Best Wishes!!!!Ed https://www.youtube.com/watch?v=WcnzetT4ezY
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- August 7, 2016 at 1:12 pm
Hi Liza, I have a couple of links for you. One is to the "Cancer research Institute or CRI" If the links works right there is a short description of Melanoma then all the different treatment options including trials in 'Adoptive Cell Therapy" or sometimes called car-t cells therapy. It kind of gives you an overview of all the different options for treatment at present. http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/melanoma The second link is to a video presentation on youtube about the research of Carl June on Engineered T-cells. The early research has been on blood born cancers like Leukemia. I hope you find this helpfull. Best Wishes!!!!Ed https://www.youtube.com/watch?v=WcnzetT4ezY
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- August 7, 2016 at 1:12 pm
Hi Liza, I have a couple of links for you. One is to the "Cancer research Institute or CRI" If the links works right there is a short description of Melanoma then all the different treatment options including trials in 'Adoptive Cell Therapy" or sometimes called car-t cells therapy. It kind of gives you an overview of all the different options for treatment at present. http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/melanoma The second link is to a video presentation on youtube about the research of Carl June on Engineered T-cells. The early research has been on blood born cancers like Leukemia. I hope you find this helpfull. Best Wishes!!!!Ed https://www.youtube.com/watch?v=WcnzetT4ezY
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- August 7, 2016 at 1:20 pm
Sorry about the first link, it didn't go dirrectly to where I had hoped it would. If you click on "Learn and Engage" then Cancer Immunotherapy followed by "Impacting All Cancers" then finally Melanoma , you should have it!!! Wasn't that easy, and the second link gets into the story of the research at the 8 min mark.
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- August 7, 2016 at 1:20 pm
Sorry about the first link, it didn't go dirrectly to where I had hoped it would. If you click on "Learn and Engage" then Cancer Immunotherapy followed by "Impacting All Cancers" then finally Melanoma , you should have it!!! Wasn't that easy, and the second link gets into the story of the research at the 8 min mark.
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- August 7, 2016 at 1:20 pm
Sorry about the first link, it didn't go dirrectly to where I had hoped it would. If you click on "Learn and Engage" then Cancer Immunotherapy followed by "Impacting All Cancers" then finally Melanoma , you should have it!!! Wasn't that easy, and the second link gets into the story of the research at the 8 min mark.
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- August 7, 2016 at 1:35 pm
One last thought is three of the other Adoptive Cell Therapy trials on the list of CRI are being run at MD Anderson and I think Josh F is in one of those!!! He might be able to share what information he has been given and research that he has done. The trial you are asking about is at the University of Kansas!!!
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- August 7, 2016 at 1:35 pm
One last thought is three of the other Adoptive Cell Therapy trials on the list of CRI are being run at MD Anderson and I think Josh F is in one of those!!! He might be able to share what information he has been given and research that he has done. The trial you are asking about is at the University of Kansas!!!
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- August 7, 2016 at 1:35 pm
One last thought is three of the other Adoptive Cell Therapy trials on the list of CRI are being run at MD Anderson and I think Josh F is in one of those!!! He might be able to share what information he has been given and research that he has done. The trial you are asking about is at the University of Kansas!!!
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- August 6, 2016 at 1:54 pm
Hi Liza,
So sorry for what you and your partner are dealing with. Perhaps this will address the immunohistochemical question you are seeking answers for: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html
Regarding sequencing: We have learned that folks do much better with anti-PD1 FOLLOWED by ipi…with nivo then ipi providing a 41% response rate and ipi followed by nivo providing only a 20% response rate. Here is a link with three reports from ASCO 2016. One of which addresses that point specifically with an additional attached link. Another addresses location of tumors and response rates along with some more lab data (though this is mor specific to anti-PD1 than ipi…though I think similar results have been found).
Perhaps this info will help. There is a great deal more info on ipi on my blog if you are interested…just use the search bubble in the top left. I wish you well. Celeste
-
- August 6, 2016 at 1:54 pm
Hi Liza,
So sorry for what you and your partner are dealing with. Perhaps this will address the immunohistochemical question you are seeking answers for: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-measuring-t-cell-exhaution-to.html
Regarding sequencing: We have learned that folks do much better with anti-PD1 FOLLOWED by ipi…with nivo then ipi providing a 41% response rate and ipi followed by nivo providing only a 20% response rate. Here is a link with three reports from ASCO 2016. One of which addresses that point specifically with an additional attached link. Another addresses location of tumors and response rates along with some more lab data (though this is mor specific to anti-PD1 than ipi…though I think similar results have been found).
Perhaps this info will help. There is a great deal more info on ipi on my blog if you are interested…just use the search bubble in the top left. I wish you well. Celeste
-
- August 6, 2016 at 2:30 pm
My husband is an Ipi responder. He had 4 surgeries for melanoma and then became stage IV with an unresectable lesion at the C1 C2 cervical spine mets to his lungs and liver and 4 sub q's. He was braf + but did not have the other test as this was in Oct. 2010. He started Ipi in March 2011 at 10 mg/kg and GMCSF. He did the initial 12 weeks with 4 doses then went onto the maintenance of every 12 weeks. The GMCSF was administered as daily injections for 14 days then 7 days off and remained that way until he went off of the trial in Dec. 2013. He became NED in July 2012 and has remained that. If you want to read more about his journey you can read his profile.
Ipi did mess with his adrenal gland and now he takes a low dose prednisone of 5 mg daily as his body makes no cortisol.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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- August 6, 2016 at 4:03 pm
Hi Judy. Is it Gene's adrenal gland that stopped working? Ipi took out my anterior pituitary gland, which means my adrenal cortex gets no signals and therefore produces no cortisol. I am interested that it attacked Gene's adrenal gland directly. Regards, Moira
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- August 6, 2016 at 4:03 pm
Hi Judy. Is it Gene's adrenal gland that stopped working? Ipi took out my anterior pituitary gland, which means my adrenal cortex gets no signals and therefore produces no cortisol. I am interested that it attacked Gene's adrenal gland directly. Regards, Moira
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- August 6, 2016 at 4:03 pm
Hi Judy. Is it Gene's adrenal gland that stopped working? Ipi took out my anterior pituitary gland, which means my adrenal cortex gets no signals and therefore produces no cortisol. I am interested that it attacked Gene's adrenal gland directly. Regards, Moira
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- August 8, 2016 at 3:50 am
Liza – I was in the same clinical trial as Gene (different location) but in the ipi only arm (no GSFM). My timeline is very similar to his by a few months both in regards to start of treatment and reaching NED status. Ipi has been my only treatment. I am Braf+. In regards to side effects I experienced severe/prolonged colitis. I remain NED 4+ years. Keeping you & your partner in my prayers
Tom
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- August 8, 2016 at 3:50 am
Liza – I was in the same clinical trial as Gene (different location) but in the ipi only arm (no GSFM). My timeline is very similar to his by a few months both in regards to start of treatment and reaching NED status. Ipi has been my only treatment. I am Braf+. In regards to side effects I experienced severe/prolonged colitis. I remain NED 4+ years. Keeping you & your partner in my prayers
Tom
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- August 8, 2016 at 3:50 am
Liza – I was in the same clinical trial as Gene (different location) but in the ipi only arm (no GSFM). My timeline is very similar to his by a few months both in regards to start of treatment and reaching NED status. Ipi has been my only treatment. I am Braf+. In regards to side effects I experienced severe/prolonged colitis. I remain NED 4+ years. Keeping you & your partner in my prayers
Tom
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- August 9, 2016 at 3:52 am
Liza – I had widespread multiple mets including lesions in the liver, thyroid, lung parenchyma, adjacent to both kidneys, various lymph nodes and some subcutaneous. My onc said my scans lit up like a Christmas tree – not good. Fortunately no brain mets. I am very fortunate to be one of those who responded really well to the Ipi.
Tom
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- August 10, 2016 at 7:30 am
Hi Tom
That’s great that ipi worked for you. How long did it take to start getting results, dp you mind me asking what is your braf status?Mel went on pembrolizumab in January for aggressive bone marrow due to brafi resistance. The pembrolizumab killed all the bone marrow cancer so hopefully ipi will kick butt.
Im currently sitting next to my partner while she’s receiving her first Ipi treatment. Hoping for the best..
Cheers
L -
- August 10, 2016 at 7:30 am
Hi Tom
That’s great that ipi worked for you. How long did it take to start getting results, dp you mind me asking what is your braf status?Mel went on pembrolizumab in January for aggressive bone marrow due to brafi resistance. The pembrolizumab killed all the bone marrow cancer so hopefully ipi will kick butt.
Im currently sitting next to my partner while she’s receiving her first Ipi treatment. Hoping for the best..
Cheers
L -
- August 10, 2016 at 7:30 am
Hi Tom
That’s great that ipi worked for you. How long did it take to start getting results, dp you mind me asking what is your braf status?Mel went on pembrolizumab in January for aggressive bone marrow due to brafi resistance. The pembrolizumab killed all the bone marrow cancer so hopefully ipi will kick butt.
Im currently sitting next to my partner while she’s receiving her first Ipi treatment. Hoping for the best..
Cheers
L -
- August 9, 2016 at 3:52 am
Liza – I had widespread multiple mets including lesions in the liver, thyroid, lung parenchyma, adjacent to both kidneys, various lymph nodes and some subcutaneous. My onc said my scans lit up like a Christmas tree – not good. Fortunately no brain mets. I am very fortunate to be one of those who responded really well to the Ipi.
Tom
-
- August 9, 2016 at 3:52 am
Liza – I had widespread multiple mets including lesions in the liver, thyroid, lung parenchyma, adjacent to both kidneys, various lymph nodes and some subcutaneous. My onc said my scans lit up like a Christmas tree – not good. Fortunately no brain mets. I am very fortunate to be one of those who responded really well to the Ipi.
Tom
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- August 6, 2016 at 2:30 pm
My husband is an Ipi responder. He had 4 surgeries for melanoma and then became stage IV with an unresectable lesion at the C1 C2 cervical spine mets to his lungs and liver and 4 sub q's. He was braf + but did not have the other test as this was in Oct. 2010. He started Ipi in March 2011 at 10 mg/kg and GMCSF. He did the initial 12 weeks with 4 doses then went onto the maintenance of every 12 weeks. The GMCSF was administered as daily injections for 14 days then 7 days off and remained that way until he went off of the trial in Dec. 2013. He became NED in July 2012 and has remained that. If you want to read more about his journey you can read his profile.
Ipi did mess with his adrenal gland and now he takes a low dose prednisone of 5 mg daily as his body makes no cortisol.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
-
- August 6, 2016 at 2:30 pm
My husband is an Ipi responder. He had 4 surgeries for melanoma and then became stage IV with an unresectable lesion at the C1 C2 cervical spine mets to his lungs and liver and 4 sub q's. He was braf + but did not have the other test as this was in Oct. 2010. He started Ipi in March 2011 at 10 mg/kg and GMCSF. He did the initial 12 weeks with 4 doses then went onto the maintenance of every 12 weeks. The GMCSF was administered as daily injections for 14 days then 7 days off and remained that way until he went off of the trial in Dec. 2013. He became NED in July 2012 and has remained that. If you want to read more about his journey you can read his profile.
Ipi did mess with his adrenal gland and now he takes a low dose prednisone of 5 mg daily as his body makes no cortisol.
Judy (loving wife of Gene Stage IV and now NED for over 4 years)
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