I would like to hear from people with stage IV and taking IPPI [yervoy]

I am also stage IV had my 3rd infusion of ipi yestereday but my doctor knows very little of this drug so I am on my own with the help of this board. I have the itching and right now I have a virus so am fighting that too. Hope someone else here can help you. My mets on the lungs have not shrunk yet and I have 3 new tumors on my arm so I am getting worse but hoping for a response.  Take care,  yoopergirl

I am also stage IV had my 3rd infusion of ipi yestereday but my doctor knows very little of this drug so I am on my own with the help of this board. I have the itching and right now I have a virus so am fighting that too. Hope someone else here can help you. My mets on the lungs have not shrunk yet and I have 3 new tumors on my arm so I am getting worse but hoping for a response.  Take care,  yoopergirl

I am also stage IV had my 3rd infusion of ipi yestereday but my doctor knows very little of this drug so I am on my own with the help of this board. I have the itching and right now I have a virus so am fighting that too. Hope someone else here can help you. My mets on the lungs have not shrunk yet and I have 3 new tumors on my arm so I am getting worse but hoping for a response.  Take care,  yoopergirl

Hi Elaine,

i am stage 4 (the walking undead as Charlie likes to call us) and i also see Dr Kendra.

I have never been on ipi but, from what i have heard it takes awhile for it to work…some, on this board, has had great success with it…Lisa, also a member of this board, has never had a side effect of it so, it is not unusual NOT to have side effects on ipi.  

boots

Hi Elaine,

i am stage 4 (the walking undead as Charlie likes to call us) and i also see Dr Kendra.

I have never been on ipi but, from what i have heard it takes awhile for it to work…some, on this board, has had great success with it…Lisa, also a member of this board, has never had a side effect of it so, it is not unusual NOT to have side effects on ipi.  

boots

Hi Elaine,

i am stage 4 (the walking undead as Charlie likes to call us) and i also see Dr Kendra.

I have never been on ipi but, from what i have heard it takes awhile for it to work…some, on this board, has had great success with it…Lisa, also a member of this board, has never had a side effect of it so, it is not unusual NOT to have side effects on ipi.  

boots

This is my melanoma doctor speech on you tube.

This is my melanoma doctor speech on you tube.

This is my melanoma doctor speech on you tube.

Elaine, I also see Dr. kendra. I am still stage 3 but am doing my next set of scans on Wed the 23rd. Just kind of wondering if you had any side effects or if you could tell when you had the lung nodules. Were you short of breath or coughing or any thing or did you just get lucky to find them on a scan.

Elaine, I also see Dr. kendra. I am still stage 3 but am doing my next set of scans on Wed the 23rd. Just kind of wondering if you had any side effects or if you could tell when you had the lung nodules. Were you short of breath or coughing or any thing or did you just get lucky to find them on a scan.

Elaine, I also see Dr. kendra. I am still stage 3 but am doing my next set of scans on Wed the 23rd. Just kind of wondering if you had any side effects or if you could tell when you had the lung nodules. Were you short of breath or coughing or any thing or did you just get lucky to find them on a scan.

Elaine.. I also asked Dr Kendra about the kids..in my case 5 and 6 year old grandkids..sharing their bugs with me as they are snot factories..and I was told not to worry to much.. just do a lot of hand washing. I will try not to do that much hugging and kissing if I can though if they have active colds.They live nearby and I baby sit a lot..it won't be easy.She also told me..the same as she told you and all the infomation that I have read.. things often get worse before they improve. Keeping fingers crossed for all of us.

Joan

Elaine.. I also asked Dr Kendra about the kids..in my case 5 and 6 year old grandkids..sharing their bugs with me as they are snot factories..and I was told not to worry to much.. just do a lot of hand washing. I will try not to do that much hugging and kissing if I can though if they have active colds.They live nearby and I baby sit a lot..it won't be easy.She also told me..the same as she told you and all the infomation that I have read.. things often get worse before they improve. Keeping fingers crossed for all of us.

Joan

Elaine.. I also asked Dr Kendra about the kids..in my case 5 and 6 year old grandkids..sharing their bugs with me as they are snot factories..and I was told not to worry to much.. just do a lot of hand washing. I will try not to do that much hugging and kissing if I can though if they have active colds.They live nearby and I baby sit a lot..it won't be easy.She also told me..the same as she told you and all the infomation that I have read.. things often get worse before they improve. Keeping fingers crossed for all of us.

Joan

My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis.  His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.

He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment.  After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.

He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!

I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.

Trisha

My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis.  His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.

He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment.  After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.

He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!

I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.

Trisha

My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis.  His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.

He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment.  After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.

He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!

I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.

Trisha

I too am a stage IV who is currently NED. This thread caught my interest because so many mentioned Dr. Kendra who I also see at The James. My treatment did not include interleukine or ippi, but I have heard from others that treatment with those drugs comes with a lot of side effects…susceptibility to other illnesses included but mainly side effects from the drugs themselves (fatigue, fevers, etc).

I was cautious during my treatments (Temodar) to avoid contact with people with colds, flu, etc. (difficult to do when your a teacher) and maintained healthy eating and hygience practices.

For those of you who do see Dr. Kendra, are any of you participating in the Melanoma Support Group that meets the 3rd Wed. of the month at the Stephanie Spielman Center?

Best to those who are actively fighting the disease….it takes a while to find your balance and peace when first dealing with this cancer.

Karen

I too am a stage IV who is currently NED. This thread caught my interest because so many mentioned Dr. Kendra who I also see at The James. My treatment did not include interleukine or ippi, but I have heard from others that treatment with those drugs comes with a lot of side effects…susceptibility to other illnesses included but mainly side effects from the drugs themselves (fatigue, fevers, etc).

I was cautious during my treatments (Temodar) to avoid contact with people with colds, flu, etc. (difficult to do when your a teacher) and maintained healthy eating and hygience practices.

For those of you who do see Dr. Kendra, are any of you participating in the Melanoma Support Group that meets the 3rd Wed. of the month at the Stephanie Spielman Center?

Best to those who are actively fighting the disease….it takes a while to find your balance and peace when first dealing with this cancer.

Karen

I too am a stage IV who is currently NED. This thread caught my interest because so many mentioned Dr. Kendra who I also see at The James. My treatment did not include interleukine or ippi, but I have heard from others that treatment with those drugs comes with a lot of side effects…susceptibility to other illnesses included but mainly side effects from the drugs themselves (fatigue, fevers, etc).

I was cautious during my treatments (Temodar) to avoid contact with people with colds, flu, etc. (difficult to do when your a teacher) and maintained healthy eating and hygience practices.

For those of you who do see Dr. Kendra, are any of you participating in the Melanoma Support Group that meets the 3rd Wed. of the month at the Stephanie Spielman Center?

Best to those who are actively fighting the disease….it takes a while to find your balance and peace when first dealing with this cancer.

Karen

I personally know stage IV people who had no side effects from IPI, but either became NED or had a long lasting regression in the disease. IPI in many cases causes side effects only after a few months of years…A good side effect signal that may appear (also in many cases only after many months of IPI) are something like a few blisters.  

I personally know stage IV people who had no side effects from IPI, but either became NED or had a long lasting regression in the disease. IPI in many cases causes side effects only after a few months of years…A good side effect signal that may appear (also in many cases only after many months of IPI) are something like a few blisters.  

I personally know stage IV people who had no side effects from IPI, but either became NED or had a long lasting regression in the disease. IPI in many cases causes side effects only after a few months of years…A good side effect signal that may appear (also in many cases only after many months of IPI) are something like a few blisters.