Yervoy / Ipi – Daily Life – Stay At Home Mom

Hello!!

I actually just posted about this earlier today if you would like to read my story (Isolated Tumor Cells SLNB Prognosis). Anyway my doctors gave me the choice of interferon or Ipi but highly cautioned me against either due to the side effects. My oncologist feels interferon only lessens your chance of recurrence by MAYBE 5-10%. As for Ipi my oncologist said that there was a high risk of lifelong side effects ie colitis. For me, I only had TWO random cancer cells in one node so I felt the severe side effects of both drugs and overall impact to my quality of life for a year outweighed any benefit for me and my doctors agreed. Also my oncologist said he felt my risk of recurrence was around 20% which I felt was fairly low and something I could live with. So that is why I chose watch and wait.

I think you will hear from many folks on here that ultimately only you can make the decision. Whatever decision you make you need to be happy with it and have no regrets if you do have a recurrence!

Good luck to you! I hope whatever decision you choose gives you lifelong NED!!!

Jenna

Hello!!

I actually just posted about this earlier today if you would like to read my story (Isolated Tumor Cells SLNB Prognosis). Anyway my doctors gave me the choice of interferon or Ipi but highly cautioned me against either due to the side effects. My oncologist feels interferon only lessens your chance of recurrence by MAYBE 5-10%. As for Ipi my oncologist said that there was a high risk of lifelong side effects ie colitis. For me, I only had TWO random cancer cells in one node so I felt the severe side effects of both drugs and overall impact to my quality of life for a year outweighed any benefit for me and my doctors agreed. Also my oncologist said he felt my risk of recurrence was around 20% which I felt was fairly low and something I could live with. So that is why I chose watch and wait.

I think you will hear from many folks on here that ultimately only you can make the decision. Whatever decision you make you need to be happy with it and have no regrets if you do have a recurrence!

Good luck to you! I hope whatever decision you choose gives you lifelong NED!!!

Jenna

Hello!!

I actually just posted about this earlier today if you would like to read my story (Isolated Tumor Cells SLNB Prognosis). Anyway my doctors gave me the choice of interferon or Ipi but highly cautioned me against either due to the side effects. My oncologist feels interferon only lessens your chance of recurrence by MAYBE 5-10%. As for Ipi my oncologist said that there was a high risk of lifelong side effects ie colitis. For me, I only had TWO random cancer cells in one node so I felt the severe side effects of both drugs and overall impact to my quality of life for a year outweighed any benefit for me and my doctors agreed. Also my oncologist said he felt my risk of recurrence was around 20% which I felt was fairly low and something I could live with. So that is why I chose watch and wait.

I think you will hear from many folks on here that ultimately only you can make the decision. Whatever decision you make you need to be happy with it and have no regrets if you do have a recurrence!

Good luck to you! I hope whatever decision you choose gives you lifelong NED!!!

Jenna

Hi there,

I finished ipi at the 3mg dose in June of this year.  I have three kids at home ( ages 8, 8 and 11). I was able to function fine while on the ipi. I was more tired than usual, had some nausea and a mild rash, but that was it. My kids are older and more independent but for me it was definitely manageable. 

From my experience there really isn't a right answer because everyone has different tolerances and risk levels. I am the type of person that needed to do something (in fact, I am in that boat again following a recurrence and will be looking for a new trial because I can't do the watch and wait).

I wish you luck in your decision.

Nancy

Hi there,

I finished ipi at the 3mg dose in June of this year.  I have three kids at home ( ages 8, 8 and 11). I was able to function fine while on the ipi. I was more tired than usual, had some nausea and a mild rash, but that was it. My kids are older and more independent but for me it was definitely manageable. 

From my experience there really isn't a right answer because everyone has different tolerances and risk levels. I am the type of person that needed to do something (in fact, I am in that boat again following a recurrence and will be looking for a new trial because I can't do the watch and wait).

I wish you luck in your decision.

Nancy

Hi there,

I finished ipi at the 3mg dose in June of this year.  I have three kids at home ( ages 8, 8 and 11). I was able to function fine while on the ipi. I was more tired than usual, had some nausea and a mild rash, but that was it. My kids are older and more independent but for me it was definitely manageable. 

From my experience there really isn't a right answer because everyone has different tolerances and risk levels. I am the type of person that needed to do something (in fact, I am in that boat again following a recurrence and will be looking for a new trial because I can't do the watch and wait).

I wish you luck in your decision.

Nancy

I can't completely relate to your story – you have a tough decision to make regarding treatment; however, we have some things in common. In 2013, I was stage I. I got pregnant and at 20 weeks found a swollen lymph node – onto stage III. I chose to carry my son, get checked, and not take any treatments. I was induced at 37 weeks and when my son was a week old, I found out my melanoma spread throughout my body and to my liver – stage IV.

I was only able to breastfeed my son for three weeks before I started chemo. Having to stop was one of the toughest parts of this "journey" (yes, corny). I'm sorry that you're also being forced into this decision  

After chemo failed me I switched hospitals/doctors and I went on the (the then trial) ipi/nivo combo. I was kicked off, but made it through 3 of the 4 treatments. I then had one infusion of just ipi and went on Opdivo (Nivo) after that…this was in May of this year. 

I had stomach issues (diarrhea/cramping) until mid-September. In my opinion, that's when the Yervoy wore off. However, my local oncologist had me start taking a pro-biotic in September, so that may have been the key to all this immunotherapy stuff. 

I can definitely answer the care question. I now have a 3-year-old girl and a 1-year-old boy. They go to daycare when I have treatment, otherwise, it's just the three of us during the day. When I was having side effects, I did have some tough days. I coped by having my daughter watch a little too much TV and my son laying on the playmat more than I wanted. Sometimes I just needed a heat pack for my cramps or to spend a little time in the bathroom. 

I hope I've helped a little. Best of luck.

Ashley

I can't completely relate to your story – you have a tough decision to make regarding treatment; however, we have some things in common. In 2013, I was stage I. I got pregnant and at 20 weeks found a swollen lymph node – onto stage III. I chose to carry my son, get checked, and not take any treatments. I was induced at 37 weeks and when my son was a week old, I found out my melanoma spread throughout my body and to my liver – stage IV.

I was only able to breastfeed my son for three weeks before I started chemo. Having to stop was one of the toughest parts of this "journey" (yes, corny). I'm sorry that you're also being forced into this decision  

After chemo failed me I switched hospitals/doctors and I went on the (the then trial) ipi/nivo combo. I was kicked off, but made it through 3 of the 4 treatments. I then had one infusion of just ipi and went on Opdivo (Nivo) after that…this was in May of this year. 

I had stomach issues (diarrhea/cramping) until mid-September. In my opinion, that's when the Yervoy wore off. However, my local oncologist had me start taking a pro-biotic in September, so that may have been the key to all this immunotherapy stuff. 

I can definitely answer the care question. I now have a 3-year-old girl and a 1-year-old boy. They go to daycare when I have treatment, otherwise, it's just the three of us during the day. When I was having side effects, I did have some tough days. I coped by having my daughter watch a little too much TV and my son laying on the playmat more than I wanted. Sometimes I just needed a heat pack for my cramps or to spend a little time in the bathroom. 

I hope I've helped a little. Best of luck.

Ashley

I can't completely relate to your story – you have a tough decision to make regarding treatment; however, we have some things in common. In 2013, I was stage I. I got pregnant and at 20 weeks found a swollen lymph node – onto stage III. I chose to carry my son, get checked, and not take any treatments. I was induced at 37 weeks and when my son was a week old, I found out my melanoma spread throughout my body and to my liver – stage IV.

I was only able to breastfeed my son for three weeks before I started chemo. Having to stop was one of the toughest parts of this "journey" (yes, corny). I'm sorry that you're also being forced into this decision  

After chemo failed me I switched hospitals/doctors and I went on the (the then trial) ipi/nivo combo. I was kicked off, but made it through 3 of the 4 treatments. I then had one infusion of just ipi and went on Opdivo (Nivo) after that…this was in May of this year. 

I had stomach issues (diarrhea/cramping) until mid-September. In my opinion, that's when the Yervoy wore off. However, my local oncologist had me start taking a pro-biotic in September, so that may have been the key to all this immunotherapy stuff. 

I can definitely answer the care question. I now have a 3-year-old girl and a 1-year-old boy. They go to daycare when I have treatment, otherwise, it's just the three of us during the day. When I was having side effects, I did have some tough days. I coped by having my daughter watch a little too much TV and my son laying on the playmat more than I wanted. Sometimes I just needed a heat pack for my cramps or to spend a little time in the bathroom. 

I hope I've helped a little. Best of luck.

Ashley

I just came off my Yervoy treatments and have three kids at home, ages 7, 6, and 4. They do go to school full time and I ended up getting a babysitter as backup help for school pickups because I wasn't sure how I'd handle the treatment. I did have colitis from the Ipi and only made it through three treatments, but the colitis was manageable through the use of steroids and a bland white bread/white rice type of diet. I had a lot of fatigue, but again, all was manageable.

Like some other posters here, I'm also of the mindset that I had to do something proactive to make me feel like I was really managing my disease. I was originally diagnosed as a stage III nearly 15 years ago, and although people love to bash on Interferon, I feel that my year on Interferon was part of the reason that I achieved such a long remission. And long remissions can be life saving. I'm now an NED stage IV patient now that my lung mets were surgically removed this June, and had my cancer come back as a stage IV even 5 years ago, I'd have a very different outlook on life. The meds available these days are so much more advanced.

That being said, I just came back from a cancer retreat in Canada where two of the women have decided to treat their own cancer using natural methods (healthy diet, meditation, supplements etc) and are seeing their tumors regress. It renewed my feeling, particularly when you're already NED, that you can be confident in your choice to follow a healthy lifestyle, as long as you're honest about whether you're truly making healthy choices. I like to say that I'm healthy since my food is, but I do carry a lot of stress which would need lots of work/therapy/etc.

Best of luck.

I just came off my Yervoy treatments and have three kids at home, ages 7, 6, and 4. They do go to school full time and I ended up getting a babysitter as backup help for school pickups because I wasn't sure how I'd handle the treatment. I did have colitis from the Ipi and only made it through three treatments, but the colitis was manageable through the use of steroids and a bland white bread/white rice type of diet. I had a lot of fatigue, but again, all was manageable.

Like some other posters here, I'm also of the mindset that I had to do something proactive to make me feel like I was really managing my disease. I was originally diagnosed as a stage III nearly 15 years ago, and although people love to bash on Interferon, I feel that my year on Interferon was part of the reason that I achieved such a long remission. And long remissions can be life saving. I'm now an NED stage IV patient now that my lung mets were surgically removed this June, and had my cancer come back as a stage IV even 5 years ago, I'd have a very different outlook on life. The meds available these days are so much more advanced.

That being said, I just came back from a cancer retreat in Canada where two of the women have decided to treat their own cancer using natural methods (healthy diet, meditation, supplements etc) and are seeing their tumors regress. It renewed my feeling, particularly when you're already NED, that you can be confident in your choice to follow a healthy lifestyle, as long as you're honest about whether you're truly making healthy choices. I like to say that I'm healthy since my food is, but I do carry a lot of stress which would need lots of work/therapy/etc.

Best of luck.

I just came off my Yervoy treatments and have three kids at home, ages 7, 6, and 4. They do go to school full time and I ended up getting a babysitter as backup help for school pickups because I wasn't sure how I'd handle the treatment. I did have colitis from the Ipi and only made it through three treatments, but the colitis was manageable through the use of steroids and a bland white bread/white rice type of diet. I had a lot of fatigue, but again, all was manageable.

Like some other posters here, I'm also of the mindset that I had to do something proactive to make me feel like I was really managing my disease. I was originally diagnosed as a stage III nearly 15 years ago, and although people love to bash on Interferon, I feel that my year on Interferon was part of the reason that I achieved such a long remission. And long remissions can be life saving. I'm now an NED stage IV patient now that my lung mets were surgically removed this June, and had my cancer come back as a stage IV even 5 years ago, I'd have a very different outlook on life. The meds available these days are so much more advanced.

That being said, I just came back from a cancer retreat in Canada where two of the women have decided to treat their own cancer using natural methods (healthy diet, meditation, supplements etc) and are seeing their tumors regress. It renewed my feeling, particularly when you're already NED, that you can be confident in your choice to follow a healthy lifestyle, as long as you're honest about whether you're truly making healthy choices. I like to say that I'm healthy since my food is, but I do carry a lot of stress which would need lots of work/therapy/etc.

Best of luck.