Getting nervous

Keep your chin up! We all have those worries. Be happy you are able to take the treatments. I am in the same boat as are most on this site. All we can do is take the treatment and wait. Everyone is different so the severity of side effects will vary. Lack of severe side effects are not proof that the treatment is not working. One day at a time.

Keep your chin up! We all have those worries. Be happy you are able to take the treatments. I am in the same boat as are most on this site. All we can do is take the treatment and wait. Everyone is different so the severity of side effects will vary. Lack of severe side effects are not proof that the treatment is not working. One day at a time.

Keep your chin up! We all have those worries. Be happy you are able to take the treatments. I am in the same boat as are most on this site. All we can do is take the treatment and wait. Everyone is different so the severity of side effects will vary. Lack of severe side effects are not proof that the treatment is not working. One day at a time.

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

On the rash – I was on Yervoy (I'm guessing ipi?) and had serious rash outbreak right after the last injection. I found Rixx Herbal Healing Lotion at a local health store (also available on Amazon). It did wonders to relieve the itching, cleared up the rash, and it even works on the massive acne outbreaks I have experienced on both Yervoy and Keytruda. The lotion can be kind of drying, so I use body lotion after. It works best on acne if you apply a little the second you notice it instead of waiting. (For me, it's body acne and face acne.)

I'm trying to stay focused on my experience and opinions here — In my opinion, no side effects is a good thing. I had side effects to Keytruda and was at full toxicity. Scans are going to be the most reliable for indication of if it is working. Yervoy did not work for me – I could feel a new tumor in my body every week. The doctor said new tumors were normal while being infused and that Yervoy really starts to work after the injections stop. Not for me. I had to go Keytruda and I reached toxicity twice with Keytruda and can no longer use it after 6 injections. It was working, We know it worked, because Keytruda was started 2.5 months after the last Yervoy dose and we mostly saw tumors shrinking. The doctors say Yervoy was out of my system within 6 months of the first injection, so 2 weeks from my first Keytruda infusion.

All in all, I've read that the combination Yervoy (ipilimumab)/Opdivo (nivolumab) [I think that's what you are doing?] is showing better results than Yervoy alone! I hope my experience and information helps, and does not scare. Best of luck to you!

Aaron, skin reactions are usually the first side effect that people experience followed by diarrhea as the second most common side effect. Real important to communicate to your Oncologist how often you are having diarrhea because it can get very serious very quickly. If they have to treat with steroids it is better to get it early rather than waiting to long and then having to do steroids for longer period of time. There is no way to know if you are a responder based on your side effect, there is no correlation between the two. Some people get lots of side effects but don't respond while others like myself have a pretty easy time with the side effect and respond in my case partial responder, now for nearly 2 and a half years. If you go to Bubbles(Celeste) blog she has some very good information about how people respond. Best Wishes!!!Ed

Aaron, skin reactions are usually the first side effect that people experience followed by diarrhea as the second most common side effect. Real important to communicate to your Oncologist how often you are having diarrhea because it can get very serious very quickly. If they have to treat with steroids it is better to get it early rather than waiting to long and then having to do steroids for longer period of time. There is no way to know if you are a responder based on your side effect, there is no correlation between the two. Some people get lots of side effects but don't respond while others like myself have a pretty easy time with the side effect and respond in my case partial responder, now for nearly 2 and a half years. If you go to Bubbles(Celeste) blog she has some very good information about how people respond. Best Wishes!!!Ed

Aaron, skin reactions are usually the first side effect that people experience followed by diarrhea as the second most common side effect. Real important to communicate to your Oncologist how often you are having diarrhea because it can get very serious very quickly. If they have to treat with steroids it is better to get it early rather than waiting to long and then having to do steroids for longer period of time. There is no way to know if you are a responder based on your side effect, there is no correlation between the two. Some people get lots of side effects but don't respond while others like myself have a pretty easy time with the side effect and respond in my case partial responder, now for nearly 2 and a half years. If you go to Bubbles(Celeste) blog she has some very good information about how people respond. Best Wishes!!!Ed

Hi Aaron

So glad to read your post.  We're on the schedule.  I get my 3rd does of opdivo/yervoy on Tuesday next week and I'm in the same boat as you.  Just 2 days of rash and some skin peeling on my hand.  My thyroid levels were up but just tested normal yesterday.  I called my doc and asked if I got a plecebo last dose because the side affects are so minimal.  I too am concerned its not doing its job since I'm not reacting much.  My doc keeps informing me its a good thing even though I can see black "dots" near the old location where the tumor was removed.  She told me to remain patient and that it would spread/grow first and to not get discouraged.  Its playing with my mind mentally and I'm having more anxiety without side affects than I did when I got the rash afer my first dose. I'm with you!!!  Just tyring to stay positive and keep busy until after the fourth dose and scans are done.  

Karen

Hi Aaron

So glad to read your post.  We're on the schedule.  I get my 3rd does of opdivo/yervoy on Tuesday next week and I'm in the same boat as you.  Just 2 days of rash and some skin peeling on my hand.  My thyroid levels were up but just tested normal yesterday.  I called my doc and asked if I got a plecebo last dose because the side affects are so minimal.  I too am concerned its not doing its job since I'm not reacting much.  My doc keeps informing me its a good thing even though I can see black "dots" near the old location where the tumor was removed.  She told me to remain patient and that it would spread/grow first and to not get discouraged.  Its playing with my mind mentally and I'm having more anxiety without side affects than I did when I got the rash afer my first dose. I'm with you!!!  Just tyring to stay positive and keep busy until after the fourth dose and scans are done.  

Karen

Hi Aaron

So glad to read your post.  We're on the schedule.  I get my 3rd does of opdivo/yervoy on Tuesday next week and I'm in the same boat as you.  Just 2 days of rash and some skin peeling on my hand.  My thyroid levels were up but just tested normal yesterday.  I called my doc and asked if I got a plecebo last dose because the side affects are so minimal.  I too am concerned its not doing its job since I'm not reacting much.  My doc keeps informing me its a good thing even though I can see black "dots" near the old location where the tumor was removed.  She told me to remain patient and that it would spread/grow first and to not get discouraged.  Its playing with my mind mentally and I'm having more anxiety without side affects than I did when I got the rash afer my first dose. I'm with you!!!  Just tyring to stay positive and keep busy until after the fourth dose and scans are done.  

Karen