› Forums › General Melanoma Community › Two Yervoy questions for Stage 3 clinical trial patients
- This topic has 39 replies, 9 voices, and was last updated 12 years, 2 months ago by
Cwaddell.
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- October 22, 2011 at 3:57 pm
My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current participants:
1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?
My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current participants:
1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?
2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.
Thanks for any information you can share with us.
BC
- Replies
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- October 22, 2011 at 6:22 pm
Hello BC,
I don't post here very often, but I think it would help you if I tell you my experience.
I am also stage III, and was / am in a trial with 10 mg / kg ipilimumab. It is a 3 year trial, which I started in September 2009.The first 4 infusions were every 3 weeks, then it changed to the maintenence phase of once every 3 months.
I started having itching / rash, tiredness and headaches during the first few weeks / months, nothing to serious.
A few days after my 4th infusion I had a colitis, but steriods helped right away.I continued the trial and eventually had 8 infusions. After that infusion I had the feeling that a fatigue that had been building up, just exploded. I was too tired to normally live my life. So at that moment, I decided that was all my body could have.
I ended the infusions, but still get my 3-monthly scans.
At the scan after the 8th infusion, I found out my spleen was increased. That is a known side effect of the drug as well. All in all, I am happy I did the trial, and I am happy I ended it.I am NED for 2 years and 3 months now, which is great!
As I was clean before I started ipi, I will never know if my NED is due to ipi, or not.All the best for you and your daughter,
Sabine
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- October 22, 2011 at 8:37 pm
Hi Sabene,
Thanks for taking the time to share your experience. The best part is hearing that you are NED for 2 + years. The trial we are looking at appears to have a shorter maintenance phase (4 infusions) so it hopefully it will be more easily tolerated. This assumes we get ipi and not interferon of course. We'd prefer to do something over wait and see, but that's what we'll do if interferon is our only choice.
Wish us luck! Best,
BC
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- October 22, 2011 at 8:37 pm
Hi Sabene,
Thanks for taking the time to share your experience. The best part is hearing that you are NED for 2 + years. The trial we are looking at appears to have a shorter maintenance phase (4 infusions) so it hopefully it will be more easily tolerated. This assumes we get ipi and not interferon of course. We'd prefer to do something over wait and see, but that's what we'll do if interferon is our only choice.
Wish us luck! Best,
BC
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- October 22, 2011 at 8:37 pm
Hi Sabene,
Thanks for taking the time to share your experience. The best part is hearing that you are NED for 2 + years. The trial we are looking at appears to have a shorter maintenance phase (4 infusions) so it hopefully it will be more easily tolerated. This assumes we get ipi and not interferon of course. We'd prefer to do something over wait and see, but that's what we'll do if interferon is our only choice.
Wish us luck! Best,
BC
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- October 27, 2011 at 3:23 am
Great to hear you are doing well. I have expectations that Ipi for Stage III people will reduce the reoccurrence rate. I would have gone for it during my month of known stage III if they had allowed it. In at least some cases it should help mop up stray cells that had escaped the operation. Even a 10-20 % reduced reoccurance rate would be very good.
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- October 27, 2011 at 3:23 am
Great to hear you are doing well. I have expectations that Ipi for Stage III people will reduce the reoccurrence rate. I would have gone for it during my month of known stage III if they had allowed it. In at least some cases it should help mop up stray cells that had escaped the operation. Even a 10-20 % reduced reoccurance rate would be very good.
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- October 27, 2011 at 3:23 am
Great to hear you are doing well. I have expectations that Ipi for Stage III people will reduce the reoccurrence rate. I would have gone for it during my month of known stage III if they had allowed it. In at least some cases it should help mop up stray cells that had escaped the operation. Even a 10-20 % reduced reoccurance rate would be very good.
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- October 22, 2011 at 6:22 pm
Hello BC,
I don't post here very often, but I think it would help you if I tell you my experience.
I am also stage III, and was / am in a trial with 10 mg / kg ipilimumab. It is a 3 year trial, which I started in September 2009.The first 4 infusions were every 3 weeks, then it changed to the maintenence phase of once every 3 months.
I started having itching / rash, tiredness and headaches during the first few weeks / months, nothing to serious.
A few days after my 4th infusion I had a colitis, but steriods helped right away.I continued the trial and eventually had 8 infusions. After that infusion I had the feeling that a fatigue that had been building up, just exploded. I was too tired to normally live my life. So at that moment, I decided that was all my body could have.
I ended the infusions, but still get my 3-monthly scans.
At the scan after the 8th infusion, I found out my spleen was increased. That is a known side effect of the drug as well. All in all, I am happy I did the trial, and I am happy I ended it.I am NED for 2 years and 3 months now, which is great!
As I was clean before I started ipi, I will never know if my NED is due to ipi, or not.All the best for you and your daughter,
Sabine
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- October 22, 2011 at 6:22 pm
Hello BC,
I don't post here very often, but I think it would help you if I tell you my experience.
I am also stage III, and was / am in a trial with 10 mg / kg ipilimumab. It is a 3 year trial, which I started in September 2009.The first 4 infusions were every 3 weeks, then it changed to the maintenence phase of once every 3 months.
I started having itching / rash, tiredness and headaches during the first few weeks / months, nothing to serious.
A few days after my 4th infusion I had a colitis, but steriods helped right away.I continued the trial and eventually had 8 infusions. After that infusion I had the feeling that a fatigue that had been building up, just exploded. I was too tired to normally live my life. So at that moment, I decided that was all my body could have.
I ended the infusions, but still get my 3-monthly scans.
At the scan after the 8th infusion, I found out my spleen was increased. That is a known side effect of the drug as well. All in all, I am happy I did the trial, and I am happy I ended it.I am NED for 2 years and 3 months now, which is great!
As I was clean before I started ipi, I will never know if my NED is due to ipi, or not.All the best for you and your daughter,
Sabine
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- October 24, 2011 at 1:40 am
Hi there. So sorry to hear that your daughter has to go through the roller coaster that melanoma is. I'm 24, also a stage III melanoma warrior. I am particiating in the trial at Memorial Sloan Kettering in NYC. Overall, I have handled things pretty well. I have had some stomach issues, but nothing that has caused me to stop living my normal life. During the initial stage of the trial I had to modify my diet a little (a bland diet) but honestly, it has not been horrible. I did complain of headaches during the first 12 weeks, but a few weeks after my 4th infusion, I really started to feel back to my normal self. I was tired….I took naps quite often. I had the worst reaction after the 4th dose….
Compared to what I have heard from warriors who have received Interferon, this trial is easier. I decided against Interferon based on the many reports that I read. Had I not been eligible for the ipi trial, I may have considered Interferon just to do SOMETHING. I think that's the hardest part about this cancer…..There are only so many things you can do to try to prevent it from advancing. I do not have much advice since I am just in the beginning stages. I go back the first week of November for my next treatment and set of scans. Feel free to read more about my experience if you would like! http://adventurewithmelanoma.blogspot.com Best of luck to your daughter AND you! I know this experience has not been easy for my mom either.
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- October 24, 2011 at 12:28 pm
HI. Thank you for sharing your experiences with the ipi trial. Like you, my daughter is 24 and still reeling from the diagnosis in July, and successful surgery in Oct. She has a few more weeks to make a decision on next steps. A lot for a young person to have to deal with. I will certainly share our comments with her and your blog. I think she will find your story and your approach to beating this inspiring. I certainly did.
Continued good luck and health. We will follow your story with great interest and channel our positivity your way.
Brad
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- October 24, 2011 at 12:28 pm
HI. Thank you for sharing your experiences with the ipi trial. Like you, my daughter is 24 and still reeling from the diagnosis in July, and successful surgery in Oct. She has a few more weeks to make a decision on next steps. A lot for a young person to have to deal with. I will certainly share our comments with her and your blog. I think she will find your story and your approach to beating this inspiring. I certainly did.
Continued good luck and health. We will follow your story with great interest and channel our positivity your way.
Brad
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- October 24, 2011 at 12:28 pm
HI. Thank you for sharing your experiences with the ipi trial. Like you, my daughter is 24 and still reeling from the diagnosis in July, and successful surgery in Oct. She has a few more weeks to make a decision on next steps. A lot for a young person to have to deal with. I will certainly share our comments with her and your blog. I think she will find your story and your approach to beating this inspiring. I certainly did.
Continued good luck and health. We will follow your story with great interest and channel our positivity your way.
Brad
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- October 25, 2011 at 11:36 pm
Brad, please keep us updated on your daughter! If she needs someone to chat with, please have her contact me. My email is [email protected]. Prayers, good wishes, and tons of good juju heading her way.
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- October 25, 2011 at 11:36 pm
Brad, please keep us updated on your daughter! If she needs someone to chat with, please have her contact me. My email is [email protected]. Prayers, good wishes, and tons of good juju heading her way.
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- October 25, 2011 at 11:36 pm
Brad, please keep us updated on your daughter! If she needs someone to chat with, please have her contact me. My email is [email protected]. Prayers, good wishes, and tons of good juju heading her way.
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- October 24, 2011 at 6:19 pm
You are such a remarkable young woman! Thank you for writing your blog…I suspect your attitude of gratitude is a huge help in your struggle with melanoma. I saw that you are getting ready to participate in an AIM walk, and I realized that there is no such thing in Sacramento. How rude! The capital of the state of CA does not have a walk??? Well, I would like to do that, with a lot of help from folks who actually know how to organize one! I had just commented (toungue in cheek) a few weeks a go about how I do want breast cancer patients to be cured, but that I had read somewhere that research scientists have enough money from campaigns to last for generations! That's what we need for melanoma. Celebrities die from melanoma, but I don't see the families behind huge campaigns to finance research. So, I truly think this is going to be a grass roots effort for each and every one of us…doing anything we can to bring "the beast" to the forefront of peoples' awareness.
Cristy, Stage IV
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- October 24, 2011 at 6:22 pm
Amen Cristy!
Thanks to all the monies donated to breast cancer research, it is now one of the most curable cancers!
Wouldn't it be great to say that about melanoma?!
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- October 24, 2011 at 6:22 pm
Amen Cristy!
Thanks to all the monies donated to breast cancer research, it is now one of the most curable cancers!
Wouldn't it be great to say that about melanoma?!
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- October 24, 2011 at 6:22 pm
Amen Cristy!
Thanks to all the monies donated to breast cancer research, it is now one of the most curable cancers!
Wouldn't it be great to say that about melanoma?!
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- October 25, 2011 at 11:40 pm
Cristy, thank you! My mom was so smart in knowing that writing about my experience would be the best therapy for me. I'm grateful that she thought of it… I am participating in the walk in Charlotte! My friend Anne, stage I, actually organized the entire thing. YOu should TOTALLY talk to them about planning on in CA. I totally agree with you about breast cancer. Of course we want breast cancer to be cured, but does the majority of the money need to go towards it? Does all of the publicity need to be about breast cancer? If you are on Facebook, add me! My melanoma friends and I discuss our "pink envy" quite often. Best wishes to you, Cristy!
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- October 25, 2011 at 11:40 pm
Cristy, thank you! My mom was so smart in knowing that writing about my experience would be the best therapy for me. I'm grateful that she thought of it… I am participating in the walk in Charlotte! My friend Anne, stage I, actually organized the entire thing. YOu should TOTALLY talk to them about planning on in CA. I totally agree with you about breast cancer. Of course we want breast cancer to be cured, but does the majority of the money need to go towards it? Does all of the publicity need to be about breast cancer? If you are on Facebook, add me! My melanoma friends and I discuss our "pink envy" quite often. Best wishes to you, Cristy!
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- October 25, 2011 at 11:40 pm
Cristy, thank you! My mom was so smart in knowing that writing about my experience would be the best therapy for me. I'm grateful that she thought of it… I am participating in the walk in Charlotte! My friend Anne, stage I, actually organized the entire thing. YOu should TOTALLY talk to them about planning on in CA. I totally agree with you about breast cancer. Of course we want breast cancer to be cured, but does the majority of the money need to go towards it? Does all of the publicity need to be about breast cancer? If you are on Facebook, add me! My melanoma friends and I discuss our "pink envy" quite often. Best wishes to you, Cristy!
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- October 24, 2011 at 6:19 pm
You are such a remarkable young woman! Thank you for writing your blog…I suspect your attitude of gratitude is a huge help in your struggle with melanoma. I saw that you are getting ready to participate in an AIM walk, and I realized that there is no such thing in Sacramento. How rude! The capital of the state of CA does not have a walk??? Well, I would like to do that, with a lot of help from folks who actually know how to organize one! I had just commented (toungue in cheek) a few weeks a go about how I do want breast cancer patients to be cured, but that I had read somewhere that research scientists have enough money from campaigns to last for generations! That's what we need for melanoma. Celebrities die from melanoma, but I don't see the families behind huge campaigns to finance research. So, I truly think this is going to be a grass roots effort for each and every one of us…doing anything we can to bring "the beast" to the forefront of peoples' awareness.
Cristy, Stage IV
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- October 24, 2011 at 6:19 pm
You are such a remarkable young woman! Thank you for writing your blog…I suspect your attitude of gratitude is a huge help in your struggle with melanoma. I saw that you are getting ready to participate in an AIM walk, and I realized that there is no such thing in Sacramento. How rude! The capital of the state of CA does not have a walk??? Well, I would like to do that, with a lot of help from folks who actually know how to organize one! I had just commented (toungue in cheek) a few weeks a go about how I do want breast cancer patients to be cured, but that I had read somewhere that research scientists have enough money from campaigns to last for generations! That's what we need for melanoma. Celebrities die from melanoma, but I don't see the families behind huge campaigns to finance research. So, I truly think this is going to be a grass roots effort for each and every one of us…doing anything we can to bring "the beast" to the forefront of peoples' awareness.
Cristy, Stage IV
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- October 24, 2011 at 1:40 am
Hi there. So sorry to hear that your daughter has to go through the roller coaster that melanoma is. I'm 24, also a stage III melanoma warrior. I am particiating in the trial at Memorial Sloan Kettering in NYC. Overall, I have handled things pretty well. I have had some stomach issues, but nothing that has caused me to stop living my normal life. During the initial stage of the trial I had to modify my diet a little (a bland diet) but honestly, it has not been horrible. I did complain of headaches during the first 12 weeks, but a few weeks after my 4th infusion, I really started to feel back to my normal self. I was tired….I took naps quite often. I had the worst reaction after the 4th dose….
Compared to what I have heard from warriors who have received Interferon, this trial is easier. I decided against Interferon based on the many reports that I read. Had I not been eligible for the ipi trial, I may have considered Interferon just to do SOMETHING. I think that's the hardest part about this cancer…..There are only so many things you can do to try to prevent it from advancing. I do not have much advice since I am just in the beginning stages. I go back the first week of November for my next treatment and set of scans. Feel free to read more about my experience if you would like! http://adventurewithmelanoma.blogspot.com Best of luck to your daughter AND you! I know this experience has not been easy for my mom either.
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- October 24, 2011 at 1:40 am
Hi there. So sorry to hear that your daughter has to go through the roller coaster that melanoma is. I'm 24, also a stage III melanoma warrior. I am particiating in the trial at Memorial Sloan Kettering in NYC. Overall, I have handled things pretty well. I have had some stomach issues, but nothing that has caused me to stop living my normal life. During the initial stage of the trial I had to modify my diet a little (a bland diet) but honestly, it has not been horrible. I did complain of headaches during the first 12 weeks, but a few weeks after my 4th infusion, I really started to feel back to my normal self. I was tired….I took naps quite often. I had the worst reaction after the 4th dose….
Compared to what I have heard from warriors who have received Interferon, this trial is easier. I decided against Interferon based on the many reports that I read. Had I not been eligible for the ipi trial, I may have considered Interferon just to do SOMETHING. I think that's the hardest part about this cancer…..There are only so many things you can do to try to prevent it from advancing. I do not have much advice since I am just in the beginning stages. I go back the first week of November for my next treatment and set of scans. Feel free to read more about my experience if you would like! http://adventurewithmelanoma.blogspot.com Best of luck to your daughter AND you! I know this experience has not been easy for my mom either.
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- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
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- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
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- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
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- October 25, 2011 at 11:27 pm
Hi BC,
I had 4 infusions of Yervoy in 08 at 10mg/kg per dose. I was taken off the trial when I developed hypophysitis ( swelling of the pituitary gland). I've been on a hormone replacement since. I was NED going into the trial as I had the tumor removed beforehand.
Best of success,
Jim M.
Stage 3C
NED: 3 years, 11 months
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- October 25, 2011 at 11:27 pm
Hi BC,
I had 4 infusions of Yervoy in 08 at 10mg/kg per dose. I was taken off the trial when I developed hypophysitis ( swelling of the pituitary gland). I've been on a hormone replacement since. I was NED going into the trial as I had the tumor removed beforehand.
Best of success,
Jim M.
Stage 3C
NED: 3 years, 11 months
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- October 25, 2011 at 11:27 pm
Hi BC,
I had 4 infusions of Yervoy in 08 at 10mg/kg per dose. I was taken off the trial when I developed hypophysitis ( swelling of the pituitary gland). I've been on a hormone replacement since. I was NED going into the trial as I had the tumor removed beforehand.
Best of success,
Jim M.
Stage 3C
NED: 3 years, 11 months
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- July 21, 2012 at 5:39 pm
Thank you all for sharing your stories and much love and prayers to you all and families.
My mum is starting a stage III clinical trial of 3mg /kg Yervoy this week in Melbourne and obviously is terrified about going into this first stage.
After 4 strokes, a hear attack, Cerebal Heamoraage and this being the 2nd diagnosis of Melanoma (Diagnosed in the lymph nodes 3years ago and now just diagnosed in LH lung, bowel and stomach) mum amazingly still has full mobility & speech but has refused and further intrusive treatment after being given a 6-12mth life sentence.
We’ve read a lot of positive stories on Yervoy trials but most have been at the 10mg /kg dose.
Anyone who has / is undergoing trials at 3mg/kg please share what you’re comfortable sharing, any and all information going into this would be greatly appreciated.
c -
- July 21, 2012 at 5:39 pm
Thank you all for sharing your stories and much love and prayers to you all and families.
My mum is starting a stage III clinical trial of 3mg /kg Yervoy this week in Melbourne and obviously is terrified about going into this first stage.
After 4 strokes, a hear attack, Cerebal Heamoraage and this being the 2nd diagnosis of Melanoma (Diagnosed in the lymph nodes 3years ago and now just diagnosed in LH lung, bowel and stomach) mum amazingly still has full mobility & speech but has refused and further intrusive treatment after being given a 6-12mth life sentence.
We’ve read a lot of positive stories on Yervoy trials but most have been at the 10mg /kg dose.
Anyone who has / is undergoing trials at 3mg/kg please share what you’re comfortable sharing, any and all information going into this would be greatly appreciated.
c -
- July 21, 2012 at 5:39 pm
Thank you all for sharing your stories and much love and prayers to you all and families.
My mum is starting a stage III clinical trial of 3mg /kg Yervoy this week in Melbourne and obviously is terrified about going into this first stage.
After 4 strokes, a hear attack, Cerebal Heamoraage and this being the 2nd diagnosis of Melanoma (Diagnosed in the lymph nodes 3years ago and now just diagnosed in LH lung, bowel and stomach) mum amazingly still has full mobility & speech but has refused and further intrusive treatment after being given a 6-12mth life sentence.
We’ve read a lot of positive stories on Yervoy trials but most have been at the 10mg /kg dose.
Anyone who has / is undergoing trials at 3mg/kg please share what you’re comfortable sharing, any and all information going into this would be greatly appreciated.
c
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