mlewis29

Hi Christal,

I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.

The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.

I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.

I wish you the best!

Mark

Hi Christal,

I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.

The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.

I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.

I wish you the best!

Mark

Hi Christal,

I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.

The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.

I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.

I wish you the best!

Mark

I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too. 

I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.

I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.

Mark

I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too. 

I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.

I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.

Mark

I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too. 

I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.

I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.

Mark

Hi Christal,

I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.

I wish you you the best as you fight this monster.

Mark

Hi Christal,

I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.

I wish you you the best as you fight this monster.

Mark

Hi Christal,

I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.

I wish you you the best as you fight this monster.

Mark