Bleeds

Hi Nell,

 I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.

 I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!

As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.

Good luck and hopefully you can jump on the anti PD1 med… Gary

Hi Nell,

 I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.

 I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!

As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.

Good luck and hopefully you can jump on the anti PD1 med… Gary

Hi Nell,

 I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.

 I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!

As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.

Good luck and hopefully you can jump on the anti PD1 med… Gary

Hi Nell,

When I was first diagnosed, I wanted to be BRAF+ as there were more options out there for treatment.

Thoughts are with you on your next treatment plans..

Best to you,

Gary 

Hi Nell,

When I was first diagnosed, I wanted to be BRAF+ as there were more options out there for treatment.

Thoughts are with you on your next treatment plans..

Best to you,

Gary 

Hi Nell,

When I was first diagnosed, I wanted to be BRAF+ as there were more options out there for treatment.

Thoughts are with you on your next treatment plans..

Best to you,

Gary 

Hi Nell,

I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.

Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!

http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214

Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.

Good luck with all,

Gary

Hi Nell,

I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.

Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!

http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214

Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.

Good luck with all,

Gary

Hi Nell,

I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.

Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!

http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214

Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.

Good luck with all,

Gary

Hi Greg,

I see Dr. Lewis at the University of Colorado (Boulder) Denver Melanoma group in Aurora. He was referred to me by my Onocoligist and also by Dr. Antoni Ribas (UCLA specialist in cancer research). I would think anyone in that practice would be great. He is not the warm fuzzy type which is nice to have in this predicament but knows his stuff and gets right to the point. Took me three weeks to become a patient and see him.

Good luck to you and Kyle!!!! Let me know if you need more info…

Gary

Hi Greg,

I see Dr. Lewis at the University of Colorado (Boulder) Denver Melanoma group in Aurora. He was referred to me by my Onocoligist and also by Dr. Antoni Ribas (UCLA specialist in cancer research). I would think anyone in that practice would be great. He is not the warm fuzzy type which is nice to have in this predicament but knows his stuff and gets right to the point. Took me three weeks to become a patient and see him.

Good luck to you and Kyle!!!! Let me know if you need more info…

Gary

Hi Greg,

I see Dr. Lewis at the University of Colorado (Boulder) Denver Melanoma group in Aurora. He was referred to me by my Onocoligist and also by Dr. Antoni Ribas (UCLA specialist in cancer research). I would think anyone in that practice would be great. He is not the warm fuzzy type which is nice to have in this predicament but knows his stuff and gets right to the point. Took me three weeks to become a patient and see him.

Good luck to you and Kyle!!!! Let me know if you need more info…

Gary