› Forums › General Melanoma Community › Yervoy did not work for me
- This topic has 36 replies, 8 voices, and was last updated 12 years, 11 months ago by
yoopergirl.
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- June 5, 2012 at 3:35 pm
I had my cat scan yesterday and found that my lesion's are getting bigger and another one starting on my rib cage. I have been short of breath for over a week and that scan showed I have fluid between my lungs and heart. If it gets worst they will drain the fluid. I am having a couple of biopsies done on June 27th and a week later see the doctor so I can be put in a clinical trial. The trial is called Alpha Gal Trial, did a little searching online but not much info. Since I am Braf negative not much out there for me.
I had my cat scan yesterday and found that my lesion's are getting bigger and another one starting on my rib cage. I have been short of breath for over a week and that scan showed I have fluid between my lungs and heart. If it gets worst they will drain the fluid. I am having a couple of biopsies done on June 27th and a week later see the doctor so I can be put in a clinical trial. The trial is called Alpha Gal Trial, did a little searching online but not much info. Since I am Braf negative not much out there for me.
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- June 5, 2012 at 3:51 pm
Great that you are lining up for a trial if needed.You are such a fighter you are an inspiration to so many of us.Will keep you in my prayers. Al
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- June 5, 2012 at 5:16 pm
Thanks Al, I have so many prayers going out, today is one of those days that the tears are just falling. Today is my Birthday and hubby surprised me with roses and a beautiful and inspiring card.
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- June 5, 2012 at 5:16 pm
Thanks Al, I have so many prayers going out, today is one of those days that the tears are just falling. Today is my Birthday and hubby surprised me with roses and a beautiful and inspiring card.
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- June 5, 2012 at 5:16 pm
Thanks Al, I have so many prayers going out, today is one of those days that the tears are just falling. Today is my Birthday and hubby surprised me with roses and a beautiful and inspiring card.
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- June 5, 2012 at 3:51 pm
Great that you are lining up for a trial if needed.You are such a fighter you are an inspiration to so many of us.Will keep you in my prayers. Al
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- June 5, 2012 at 3:51 pm
Great that you are lining up for a trial if needed.You are such a fighter you are an inspiration to so many of us.Will keep you in my prayers. Al
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- June 5, 2012 at 5:33 pm
You are goin to have days of crying. I do too !!! You need to wipe those tears and keep fighting !!!!!!! There are many patients on this forum that can help you through this. Use this forum like i do to get you help and to vent.
My thoughts are with you and keep us posted.
Susan NY
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- June 5, 2012 at 5:33 pm
You are goin to have days of crying. I do too !!! You need to wipe those tears and keep fighting !!!!!!! There are many patients on this forum that can help you through this. Use this forum like i do to get you help and to vent.
My thoughts are with you and keep us posted.
Susan NY
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- June 5, 2012 at 5:33 pm
You are goin to have days of crying. I do too !!! You need to wipe those tears and keep fighting !!!!!!! There are many patients on this forum that can help you through this. Use this forum like i do to get you help and to vent.
My thoughts are with you and keep us posted.
Susan NY
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- June 5, 2012 at 5:57 pm
By the way HAPPY BIRTHDAY and many many more. Al
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- June 5, 2012 at 5:57 pm
By the way HAPPY BIRTHDAY and many many more. Al
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- June 5, 2012 at 5:57 pm
By the way HAPPY BIRTHDAY and many many more. Al
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- June 5, 2012 at 6:07 pm
My search showed 3 million references, try
also there were several links (pages) for clinical trials.
Best wishes,
Gene
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- June 5, 2012 at 6:07 pm
My search showed 3 million references, try
also there were several links (pages) for clinical trials.
Best wishes,
Gene
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- June 5, 2012 at 6:07 pm
My search showed 3 million references, try
also there were several links (pages) for clinical trials.
Best wishes,
Gene
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- June 5, 2012 at 7:10 pm
Happy birthday! What a sweetie your husband is. You two sound like a good team!
The roller coaster is painful, that's for sure. However, you have demonstrated strength and the willingness to fight previously. I am sure that those are still inside you. I hope you can ride out this disappointment and get your head around your next treatment plan. This could be the one that you're hoping for/ We are all with you pulling and pushing when you need us.
Hope
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- June 5, 2012 at 7:10 pm
Happy birthday! What a sweetie your husband is. You two sound like a good team!
The roller coaster is painful, that's for sure. However, you have demonstrated strength and the willingness to fight previously. I am sure that those are still inside you. I hope you can ride out this disappointment and get your head around your next treatment plan. This could be the one that you're hoping for/ We are all with you pulling and pushing when you need us.
Hope
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- June 5, 2012 at 7:10 pm
Happy birthday! What a sweetie your husband is. You two sound like a good team!
The roller coaster is painful, that's for sure. However, you have demonstrated strength and the willingness to fight previously. I am sure that those are still inside you. I hope you can ride out this disappointment and get your head around your next treatment plan. This could be the one that you're hoping for/ We are all with you pulling and pushing when you need us.
Hope
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- June 6, 2012 at 2:41 am
Yervoy didn't work for me either, I think. My post treatment scans showed growth in the old ones & also new ones. I just started the 2nd round of anti-PD1 today because last weeks scan showed significant decrease in all my pathology. We talk about having a plan B,C, etc. This is plan E for me and it looks like it is working. I am hoping you have the same luck. All my best. Dan
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- June 6, 2012 at 2:41 am
Yervoy didn't work for me either, I think. My post treatment scans showed growth in the old ones & also new ones. I just started the 2nd round of anti-PD1 today because last weeks scan showed significant decrease in all my pathology. We talk about having a plan B,C, etc. This is plan E for me and it looks like it is working. I am hoping you have the same luck. All my best. Dan
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- June 7, 2012 at 2:01 pm
Hi,
I am sorry. I have not heard of that trial, I will research that one too. Have you tried to get on any of the Pd-1 trials out there, I know they are hard to find. Sloan Kettering had one, it had two arms one arm was for people who had recently stopped ippi and there seemed to be spots on it two weeks ago, especially the ippi arm of it. I dont know if there are similar trials around, maybe tampa or yale?
I finished my ippi treatments and got mixed results. Because of mixed results my doctor was having me try PD-1 trial in boston, but unfortunately during the testing for that trial they found a 1cm tumor in my brain which knocked me out 🙁 So now I have to have brain radiation done then go back to drawing board and hope a trial comes up that will work for me.
I am sorry about the fluid build up and having it effect your breathing. I hope they can help you with that. I have had my lung tumor grow and shrink and when it was bigger my breathing was tough, I know that is hard to deal with.
keep us posted.
laurie from maine
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- June 7, 2012 at 3:43 pm
I did ask about the PD 1 but he and his associate thinks this one will help me. I feel much better today lots of energy and my breathing is better, I had a lot of coughing this morning and bringing up some blood so thinking maybe some of the fluid came up but do intend on calling the doctor if it continues. We travel 6 hours to the Carbone Cancer center/ I am sorry about your brain tumor, hope they can take care of that and you can get on track for the PD-1 trial. Best of luck to you.
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- June 8, 2012 at 12:38 pm
HI
Wow 6 hours that is a long drive.
I hope today is a better day with continued more energy. I understand about the coughing up helping, I had days where I was really wheezing and then coughed up junk and was good for a couple of days I never had a lot of blood thou just spots of it. I am wondering what your doctors said about the coughing up blood, are they having you come in, I know with the long ride you have to really plan it.
I am hopeful with the recent conference ASCO we will find more and more options open for the stage 4 people.
take care, keep us posted
laurie from maine
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- June 8, 2012 at 12:38 pm
HI
Wow 6 hours that is a long drive.
I hope today is a better day with continued more energy. I understand about the coughing up helping, I had days where I was really wheezing and then coughed up junk and was good for a couple of days I never had a lot of blood thou just spots of it. I am wondering what your doctors said about the coughing up blood, are they having you come in, I know with the long ride you have to really plan it.
I am hopeful with the recent conference ASCO we will find more and more options open for the stage 4 people.
take care, keep us posted
laurie from maine
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- June 8, 2012 at 7:17 pm
I did not cough up anymore so did not call the doctor, I also hope that the conference will find more options for us.
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- June 8, 2012 at 7:17 pm
I did not cough up anymore so did not call the doctor, I also hope that the conference will find more options for us.
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- June 8, 2012 at 7:17 pm
I did not cough up anymore so did not call the doctor, I also hope that the conference will find more options for us.
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- June 8, 2012 at 12:38 pm
HI
Wow 6 hours that is a long drive.
I hope today is a better day with continued more energy. I understand about the coughing up helping, I had days where I was really wheezing and then coughed up junk and was good for a couple of days I never had a lot of blood thou just spots of it. I am wondering what your doctors said about the coughing up blood, are they having you come in, I know with the long ride you have to really plan it.
I am hopeful with the recent conference ASCO we will find more and more options open for the stage 4 people.
take care, keep us posted
laurie from maine
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- June 7, 2012 at 3:43 pm
I did ask about the PD 1 but he and his associate thinks this one will help me. I feel much better today lots of energy and my breathing is better, I had a lot of coughing this morning and bringing up some blood so thinking maybe some of the fluid came up but do intend on calling the doctor if it continues. We travel 6 hours to the Carbone Cancer center/ I am sorry about your brain tumor, hope they can take care of that and you can get on track for the PD-1 trial. Best of luck to you.
-
- June 7, 2012 at 3:43 pm
I did ask about the PD 1 but he and his associate thinks this one will help me. I feel much better today lots of energy and my breathing is better, I had a lot of coughing this morning and bringing up some blood so thinking maybe some of the fluid came up but do intend on calling the doctor if it continues. We travel 6 hours to the Carbone Cancer center/ I am sorry about your brain tumor, hope they can take care of that and you can get on track for the PD-1 trial. Best of luck to you.
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- June 7, 2012 at 2:01 pm
Hi,
I am sorry. I have not heard of that trial, I will research that one too. Have you tried to get on any of the Pd-1 trials out there, I know they are hard to find. Sloan Kettering had one, it had two arms one arm was for people who had recently stopped ippi and there seemed to be spots on it two weeks ago, especially the ippi arm of it. I dont know if there are similar trials around, maybe tampa or yale?
I finished my ippi treatments and got mixed results. Because of mixed results my doctor was having me try PD-1 trial in boston, but unfortunately during the testing for that trial they found a 1cm tumor in my brain which knocked me out 🙁 So now I have to have brain radiation done then go back to drawing board and hope a trial comes up that will work for me.
I am sorry about the fluid build up and having it effect your breathing. I hope they can help you with that. I have had my lung tumor grow and shrink and when it was bigger my breathing was tough, I know that is hard to deal with.
keep us posted.
laurie from maine
-
- June 7, 2012 at 2:01 pm
Hi,
I am sorry. I have not heard of that trial, I will research that one too. Have you tried to get on any of the Pd-1 trials out there, I know they are hard to find. Sloan Kettering had one, it had two arms one arm was for people who had recently stopped ippi and there seemed to be spots on it two weeks ago, especially the ippi arm of it. I dont know if there are similar trials around, maybe tampa or yale?
I finished my ippi treatments and got mixed results. Because of mixed results my doctor was having me try PD-1 trial in boston, but unfortunately during the testing for that trial they found a 1cm tumor in my brain which knocked me out 🙁 So now I have to have brain radiation done then go back to drawing board and hope a trial comes up that will work for me.
I am sorry about the fluid build up and having it effect your breathing. I hope they can help you with that. I have had my lung tumor grow and shrink and when it was bigger my breathing was tough, I know that is hard to deal with.
keep us posted.
laurie from maine
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- June 6, 2012 at 2:41 am
Yervoy didn't work for me either, I think. My post treatment scans showed growth in the old ones & also new ones. I just started the 2nd round of anti-PD1 today because last weeks scan showed significant decrease in all my pathology. We talk about having a plan B,C, etc. This is plan E for me and it looks like it is working. I am hoping you have the same luck. All my best. Dan
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