Looking for someone who can they they have been there…

Hi Lkopf,

No one's been in the exact same situation of course.

Back in October 2010 I had one 3cm brain met removed and, one smaller one CyberKnife'd a month later. Then two bigger ones resected in June 2011, plus Gamma Knife to 2 smaller ones, plus Yervoy right after that. I had not gotten a systemic treatment after the first round of brain tumors in 2010. Knock on wood, the brain has been looking good since then.

In my body, my tumor load has always been relatively low. It was in both lungs in 2010 (put in remission by high-dose IL2). More recently, a couple of lymph nodes and possibly a T3 vertebrae recurrence a year or so ago, but outside the brain. Those been controlled with a combo phase I trial of anti-PD1 and another drug. 

My oncologist thinks that back in 2011, the addition of Yervoy after the second round of brain met surgery/radiation is what has helped keep things good in my brain since then.

Good luck starting your Yervoy treatments tomorrow. I'll say it was a nice sight seeing the Yervoy IV bag when I started on it. I hope you'll see stability, or even better, some shrinkage in the near future.

– Kyle

Hi Lkopf,

No one's been in the exact same situation of course.

Back in October 2010 I had one 3cm brain met removed and, one smaller one CyberKnife'd a month later. Then two bigger ones resected in June 2011, plus Gamma Knife to 2 smaller ones, plus Yervoy right after that. I had not gotten a systemic treatment after the first round of brain tumors in 2010. Knock on wood, the brain has been looking good since then.

In my body, my tumor load has always been relatively low. It was in both lungs in 2010 (put in remission by high-dose IL2). More recently, a couple of lymph nodes and possibly a T3 vertebrae recurrence a year or so ago, but outside the brain. Those been controlled with a combo phase I trial of anti-PD1 and another drug. 

My oncologist thinks that back in 2011, the addition of Yervoy after the second round of brain met surgery/radiation is what has helped keep things good in my brain since then.

Good luck starting your Yervoy treatments tomorrow. I'll say it was a nice sight seeing the Yervoy IV bag when I started on it. I hope you'll see stability, or even better, some shrinkage in the near future.

– Kyle

Hi Lkopf,

No one's been in the exact same situation of course.

Back in October 2010 I had one 3cm brain met removed and, one smaller one CyberKnife'd a month later. Then two bigger ones resected in June 2011, plus Gamma Knife to 2 smaller ones, plus Yervoy right after that. I had not gotten a systemic treatment after the first round of brain tumors in 2010. Knock on wood, the brain has been looking good since then.

In my body, my tumor load has always been relatively low. It was in both lungs in 2010 (put in remission by high-dose IL2). More recently, a couple of lymph nodes and possibly a T3 vertebrae recurrence a year or so ago, but outside the brain. Those been controlled with a combo phase I trial of anti-PD1 and another drug. 

My oncologist thinks that back in 2011, the addition of Yervoy after the second round of brain met surgery/radiation is what has helped keep things good in my brain since then.

Good luck starting your Yervoy treatments tomorrow. I'll say it was a nice sight seeing the Yervoy IV bag when I started on it. I hope you'll see stability, or even better, some shrinkage in the near future.

– Kyle

I remember Eva's story because she got on the same keytruda trial as me. She had it all over in her head liver and everywhere . That's after going through craziness of several treatments and such. You probably won't hear too much from her anymore because she is well on her way to being NED no evidence of disease. Now she's loving her teaching job and enjoying a more normal life. My story isn't that successful yet. I have around 30 tumors. Most in the bones that have grown out to soft tissue including growing in the skull and pressing on the brain. I'm up here in Chicago today trying to get into a trial med. So no matter how hard it gets never ever give up. You could end up like Eva and others if you just keep trying.

Artie

I remember Eva's story because she got on the same keytruda trial as me. She had it all over in her head liver and everywhere . That's after going through craziness of several treatments and such. You probably won't hear too much from her anymore because she is well on her way to being NED no evidence of disease. Now she's loving her teaching job and enjoying a more normal life. My story isn't that successful yet. I have around 30 tumors. Most in the bones that have grown out to soft tissue including growing in the skull and pressing on the brain. I'm up here in Chicago today trying to get into a trial med. So no matter how hard it gets never ever give up. You could end up like Eva and others if you just keep trying.

Artie

I remember Eva's story because she got on the same keytruda trial as me. She had it all over in her head liver and everywhere . That's after going through craziness of several treatments and such. You probably won't hear too much from her anymore because she is well on her way to being NED no evidence of disease. Now she's loving her teaching job and enjoying a more normal life. My story isn't that successful yet. I have around 30 tumors. Most in the bones that have grown out to soft tissue including growing in the skull and pressing on the brain. I'm up here in Chicago today trying to get into a trial med. So no matter how hard it gets never ever give up. You could end up like Eva and others if you just keep trying.

Artie

I'm sorry to hear about your diagnosis. You'll see that there are a number of Stage IV patients on this forum who are doing well. It sounds like you've not yet received systemic treatment. Did your onc (hopefully a melanoma specialist?) raise the possibility of the Yervoy-Opdivo (ipi-nivo) trial? As you may know from reading this forum, this combo is very promising (though 50% of patients will have more involved side effects). Once you start on Yervoy (alone), you would not be eligible. Of course, Yervoy alone does have promise and, if it doesn't work, PD-1 (Opdivo or Keytruda) would be available.

I'm sorry to hear about your diagnosis. You'll see that there are a number of Stage IV patients on this forum who are doing well. It sounds like you've not yet received systemic treatment. Did your onc (hopefully a melanoma specialist?) raise the possibility of the Yervoy-Opdivo (ipi-nivo) trial? As you may know from reading this forum, this combo is very promising (though 50% of patients will have more involved side effects). Once you start on Yervoy (alone), you would not be eligible. Of course, Yervoy alone does have promise and, if it doesn't work, PD-1 (Opdivo or Keytruda) would be available.

I'm sorry to hear about your diagnosis. You'll see that there are a number of Stage IV patients on this forum who are doing well. It sounds like you've not yet received systemic treatment. Did your onc (hopefully a melanoma specialist?) raise the possibility of the Yervoy-Opdivo (ipi-nivo) trial? As you may know from reading this forum, this combo is very promising (though 50% of patients will have more involved side effects). Once you start on Yervoy (alone), you would not be eligible. Of course, Yervoy alone does have promise and, if it doesn't work, PD-1 (Opdivo or Keytruda) would be available.

Lkopf,

So sorry you are having to deal with this.  Let me start out by saying I hope you are at a place that has melanoma specialist.  For some Yervoy is their silverbullet with a long durable response.  Please stay connected here and let us know how you are doing.  We have a lot of experience with Yervoy on the board, myself included, and can help ease some of your worries.  There's a very good chance you won't have any severe side effects but you want to familiarize yourself with all the side effects that are possible so you can recognize them early.  Most are very manageable if caught early but if left untreated too long they can become very serious. 

I haven't watched this in a while but I remember it being very well done and may provide some comfort for you at this very difficult time.  You may have to enter your name and email to watch it but you won't receive spam email or anything like that from registering.  Best of luck to you.

http://melanomainternational.org/melanoma-patients-speak-out/

Brian

Lkopf,

So sorry you are having to deal with this.  Let me start out by saying I hope you are at a place that has melanoma specialist.  For some Yervoy is their silverbullet with a long durable response.  Please stay connected here and let us know how you are doing.  We have a lot of experience with Yervoy on the board, myself included, and can help ease some of your worries.  There's a very good chance you won't have any severe side effects but you want to familiarize yourself with all the side effects that are possible so you can recognize them early.  Most are very manageable if caught early but if left untreated too long they can become very serious. 

I haven't watched this in a while but I remember it being very well done and may provide some comfort for you at this very difficult time.  You may have to enter your name and email to watch it but you won't receive spam email or anything like that from registering.  Best of luck to you.

http://melanomainternational.org/melanoma-patients-speak-out/

Brian

Lkopf,

So sorry you are having to deal with this.  Let me start out by saying I hope you are at a place that has melanoma specialist.  For some Yervoy is their silverbullet with a long durable response.  Please stay connected here and let us know how you are doing.  We have a lot of experience with Yervoy on the board, myself included, and can help ease some of your worries.  There's a very good chance you won't have any severe side effects but you want to familiarize yourself with all the side effects that are possible so you can recognize them early.  Most are very manageable if caught early but if left untreated too long they can become very serious. 

I haven't watched this in a while but I remember it being very well done and may provide some comfort for you at this very difficult time.  You may have to enter your name and email to watch it but you won't receive spam email or anything like that from registering.  Best of luck to you.

http://melanomainternational.org/melanoma-patients-speak-out/

Brian

Hi, I've got a rare break in my work schedule and was reading a few posts- this one caught my eye. What other people have said is true- no one's situation is the same as another's. 

As far as my journey, what was said is true- I started out as a stage III that progressed to IV near the end of the full year of interferon. I then proceeded through IL-2, Ipi, and BRAF/MEK combo with no success and all in all close to 20 brain mets (in batches of 5-7), well over 30 masses I could feel at any given time in/under my skin. The other tumors I couldn't feel: including in my lungs, around my heart, kidney, abdomen, pancreas, spleen, and in my spine. I've had whole brain radiation, 2 rounds of gamma knife, and last September a craniotomy for the brain mets. 

I started PD-1 on an expanded access program last June (less than 2 weeks after my last gamma knife). One of my doses was mildly delayed by the craniotomy (which ended up being an entirely dead tumor), and when I was ready to go back on it had been FDA approved. I've been getting a dose every 3 weeks since then and my scans are getting better and better. 

I very much agree a melanoma specialist (or in my case 2 or 3) is very important. It's also important to remember that all of the therapies have helped significant numbers of people. There's a whole lot more now than there ever used to be. I know it's hard, but try not to get too dissapointed if something doesn't work- just keep moving on to the next one. There's got to be something that will work for you if there was for me.

Best of luck to you,

-Eva

Hi, I've got a rare break in my work schedule and was reading a few posts- this one caught my eye. What other people have said is true- no one's situation is the same as another's. 

As far as my journey, what was said is true- I started out as a stage III that progressed to IV near the end of the full year of interferon. I then proceeded through IL-2, Ipi, and BRAF/MEK combo with no success and all in all close to 20 brain mets (in batches of 5-7), well over 30 masses I could feel at any given time in/under my skin. The other tumors I couldn't feel: including in my lungs, around my heart, kidney, abdomen, pancreas, spleen, and in my spine. I've had whole brain radiation, 2 rounds of gamma knife, and last September a craniotomy for the brain mets. 

I started PD-1 on an expanded access program last June (less than 2 weeks after my last gamma knife). One of my doses was mildly delayed by the craniotomy (which ended up being an entirely dead tumor), and when I was ready to go back on it had been FDA approved. I've been getting a dose every 3 weeks since then and my scans are getting better and better. 

I very much agree a melanoma specialist (or in my case 2 or 3) is very important. It's also important to remember that all of the therapies have helped significant numbers of people. There's a whole lot more now than there ever used to be. I know it's hard, but try not to get too dissapointed if something doesn't work- just keep moving on to the next one. There's got to be something that will work for you if there was for me.

Best of luck to you,

-Eva

Hi, I've got a rare break in my work schedule and was reading a few posts- this one caught my eye. What other people have said is true- no one's situation is the same as another's. 

As far as my journey, what was said is true- I started out as a stage III that progressed to IV near the end of the full year of interferon. I then proceeded through IL-2, Ipi, and BRAF/MEK combo with no success and all in all close to 20 brain mets (in batches of 5-7), well over 30 masses I could feel at any given time in/under my skin. The other tumors I couldn't feel: including in my lungs, around my heart, kidney, abdomen, pancreas, spleen, and in my spine. I've had whole brain radiation, 2 rounds of gamma knife, and last September a craniotomy for the brain mets. 

I started PD-1 on an expanded access program last June (less than 2 weeks after my last gamma knife). One of my doses was mildly delayed by the craniotomy (which ended up being an entirely dead tumor), and when I was ready to go back on it had been FDA approved. I've been getting a dose every 3 weeks since then and my scans are getting better and better. 

I very much agree a melanoma specialist (or in my case 2 or 3) is very important. It's also important to remember that all of the therapies have helped significant numbers of people. There's a whole lot more now than there ever used to be. I know it's hard, but try not to get too dissapointed if something doesn't work- just keep moving on to the next one. There's got to be something that will work for you if there was for me.

Best of luck to you,

-Eva

I am so sorry to hear of your diagnosis. There are so many people that are stage IV and kicking butt!!! You are young and strong and I know you will fight!!! Im just curious, you said you had a birthmark removed 4 years ago. Was your birthmark a melanoma?? Was it abnormal? Does your doctor suspect that the melanoma stemmed from the birthmark? 🙂 good luck Hun!

I am so sorry to hear of your diagnosis. There are so many people that are stage IV and kicking butt!!! You are young and strong and I know you will fight!!! Im just curious, you said you had a birthmark removed 4 years ago. Was your birthmark a melanoma?? Was it abnormal? Does your doctor suspect that the melanoma stemmed from the birthmark? 🙂 good luck Hun!

I am so sorry to hear of your diagnosis. There are so many people that are stage IV and kicking butt!!! You are young and strong and I know you will fight!!! Im just curious, you said you had a birthmark removed 4 years ago. Was your birthmark a melanoma?? Was it abnormal? Does your doctor suspect that the melanoma stemmed from the birthmark? 🙂 good luck Hun!