› Forums › General Melanoma Community › Confused by trial choices
- This topic has 33 replies, 7 voices, and was last updated 11 years, 7 months ago by
awillett1991.
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- September 11, 2012 at 12:49 am
I was diagnosed on 8-17 with Stage IV melanoma in my chest, had surgery on 8-31 and am now NED. So far, I've been treated at Baptist Hospital in Jacksonville, FL but I consulted with Dr. Jeffrey Weber at Moffit last Friday. Both Baptist and Weber tell me that the chance of recurrence is 75-80% and that I should be on some adjuvant therapy.
I was diagnosed on 8-17 with Stage IV melanoma in my chest, had surgery on 8-31 and am now NED. So far, I've been treated at Baptist Hospital in Jacksonville, FL but I consulted with Dr. Jeffrey Weber at Moffit last Friday. Both Baptist and Weber tell me that the chance of recurrence is 75-80% and that I should be on some adjuvant therapy.
I am very impressed with Moffitt. They have three trials, anti-PD1, Mage vaccine, and Yervoy. Baptist has one trial that is randomized between Yervoy and Alpha Interferon 2b. Dr. Weber strongly suggested the PD1 trial based upon my profile but I may not qualify (waiting on the results of the HLA-2 test). The onccologist at Baptist suggested that I either get on their trial or start "Peg Alpha Interferon".
This is a hard decision and it feels like I'm rolling the dice with my life. My gut is telling to roll the dice with PD1. Whatever choice I make I need to feel good enough to be able to work on my computer from a home office.
Does anybody have any advice or personal experience they can share to help me with my decision?
Thanks,
Frank
- Replies
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- September 11, 2012 at 1:15 am
In general, Interferon is typically recommended for stage III, not stage IV. I'm not sure about pegylated Interferon and if it recommended for stage IV – but I doubt it. Do some research on the survival curve numbers for Interferon. Do a search here and you'll find it rarely used for stage IV except maybe in countries where there are limited options otherwise. I'm not stage IV but have been around here a long time. My opinion would be to keep researching the other trial options. Yervoy might be a worthwhile choice, but I wouldn't want to be randomized into the Interferon arm if I were stage IV.
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- September 11, 2012 at 1:33 am
Thanks for the reply. Everything I've read seems to point out that most recipients feel crappy during the course of the treatment and the response rate is less than 5%. I thnk that PD1 or Yervoy are my best choices if eligible. Your advice is very much appreciated!
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- September 11, 2012 at 1:33 am
Thanks for the reply. Everything I've read seems to point out that most recipients feel crappy during the course of the treatment and the response rate is less than 5%. I thnk that PD1 or Yervoy are my best choices if eligible. Your advice is very much appreciated!
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- September 11, 2012 at 1:33 am
Thanks for the reply. Everything I've read seems to point out that most recipients feel crappy during the course of the treatment and the response rate is less than 5%. I thnk that PD1 or Yervoy are my best choices if eligible. Your advice is very much appreciated!
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- September 11, 2012 at 1:15 am
In general, Interferon is typically recommended for stage III, not stage IV. I'm not sure about pegylated Interferon and if it recommended for stage IV – but I doubt it. Do some research on the survival curve numbers for Interferon. Do a search here and you'll find it rarely used for stage IV except maybe in countries where there are limited options otherwise. I'm not stage IV but have been around here a long time. My opinion would be to keep researching the other trial options. Yervoy might be a worthwhile choice, but I wouldn't want to be randomized into the Interferon arm if I were stage IV.
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- September 11, 2012 at 1:15 am
In general, Interferon is typically recommended for stage III, not stage IV. I'm not sure about pegylated Interferon and if it recommended for stage IV – but I doubt it. Do some research on the survival curve numbers for Interferon. Do a search here and you'll find it rarely used for stage IV except maybe in countries where there are limited options otherwise. I'm not stage IV but have been around here a long time. My opinion would be to keep researching the other trial options. Yervoy might be a worthwhile choice, but I wouldn't want to be randomized into the Interferon arm if I were stage IV.
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- September 11, 2012 at 2:07 am
If my memory & understanding is correct (not a sure bet), I believe that pegylated interferon is just a form that allows fewer shots per week. Since Yervoy & interferon are both FDA approved, I would want to know what the trial is investigating. I do not have near the expertise of others here, but having been on all three, I would go for the pd1. That's a VERY lay opinion.
Dan
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- September 11, 2012 at 2:07 am
If my memory & understanding is correct (not a sure bet), I believe that pegylated interferon is just a form that allows fewer shots per week. Since Yervoy & interferon are both FDA approved, I would want to know what the trial is investigating. I do not have near the expertise of others here, but having been on all three, I would go for the pd1. That's a VERY lay opinion.
Dan
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- September 11, 2012 at 2:28 am
My oncologist at Baptist tells me that Yervoy is FDA approved for those with active nodes, it is not approved for those of us that are NED. It's funny, if the tumor wasn't removed, I could ask for Yervoy treatment from my insurance company. Because it was removed surgically, I can't get Yervoy that is paid for by the insurer. Yikes!
The only drug that is FDA approved is Alphainterferon for Stage IV melanoma with excised tumors, NED. That is why I need a PD1, Yervoy or Mage trial. Either that or accept alphainteferon (with a very poor success rate). Thanks for your input.
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- September 11, 2012 at 2:28 am
My oncologist at Baptist tells me that Yervoy is FDA approved for those with active nodes, it is not approved for those of us that are NED. It's funny, if the tumor wasn't removed, I could ask for Yervoy treatment from my insurance company. Because it was removed surgically, I can't get Yervoy that is paid for by the insurer. Yikes!
The only drug that is FDA approved is Alphainterferon for Stage IV melanoma with excised tumors, NED. That is why I need a PD1, Yervoy or Mage trial. Either that or accept alphainteferon (with a very poor success rate). Thanks for your input.
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- September 11, 2012 at 2:28 am
My oncologist at Baptist tells me that Yervoy is FDA approved for those with active nodes, it is not approved for those of us that are NED. It's funny, if the tumor wasn't removed, I could ask for Yervoy treatment from my insurance company. Because it was removed surgically, I can't get Yervoy that is paid for by the insurer. Yikes!
The only drug that is FDA approved is Alphainterferon for Stage IV melanoma with excised tumors, NED. That is why I need a PD1, Yervoy or Mage trial. Either that or accept alphainteferon (with a very poor success rate). Thanks for your input.
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- September 11, 2012 at 2:07 am
If my memory & understanding is correct (not a sure bet), I believe that pegylated interferon is just a form that allows fewer shots per week. Since Yervoy & interferon are both FDA approved, I would want to know what the trial is investigating. I do not have near the expertise of others here, but having been on all three, I would go for the pd1. That's a VERY lay opinion.
Dan
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- September 11, 2012 at 2:30 pm
Frank,
I don't have any advice for you, but I'm stage 3b and in the Jax area & my surgeon is at Baptist. My oncologist was, but I moved to Mayo Clinic. I'm hoping to get into the clinical trial comparing the ipi to interferon, and obviously hoping to get the ipi because of the low success rate of the interferon. I've already decided that if I get put into the interferon arm, I'll try it, but if it makes me sick, I'll quit. To me, being sick for a year isn't worth the 3-5% success rate. Anyway I know you were asking for advice and experience, but I just wanted to say good luck! I know how you feel with the whole "rolling the dice" thing, I do not like the idea of being randomized and not having control over the drug I get, but all of this is a reminder that I'm not always in control.
Best of luck choosing your treatment and getting healthier 🙂
Melissa
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- September 11, 2012 at 2:30 pm
Frank,
I don't have any advice for you, but I'm stage 3b and in the Jax area & my surgeon is at Baptist. My oncologist was, but I moved to Mayo Clinic. I'm hoping to get into the clinical trial comparing the ipi to interferon, and obviously hoping to get the ipi because of the low success rate of the interferon. I've already decided that if I get put into the interferon arm, I'll try it, but if it makes me sick, I'll quit. To me, being sick for a year isn't worth the 3-5% success rate. Anyway I know you were asking for advice and experience, but I just wanted to say good luck! I know how you feel with the whole "rolling the dice" thing, I do not like the idea of being randomized and not having control over the drug I get, but all of this is a reminder that I'm not always in control.
Best of luck choosing your treatment and getting healthier 🙂
Melissa
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- September 11, 2012 at 3:44 pm
Thanks for the reply! I'm very happy I made the trip to Moffit, it opened up the immunology trial possbilities. What's nice is that Dr. Weber at Moffitt said that if I'm in-between treatments in Jax, he will have one of his associates at Mayo standing by to treat side effects, Dr. Richard Joseph. I'm anxious to hear the results of my HLA test to see if I am eligible for the anti-PD1 trial at Moffitt. If not, I'm thinking about the Mage trial (#2), IPI (#3), and as a last resort Peg Alpha Interferon. If you ever need to talk, just ask for my phone number and we can chat.
All the best,
Frank
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- September 11, 2012 at 3:44 pm
Thanks for the reply! I'm very happy I made the trip to Moffit, it opened up the immunology trial possbilities. What's nice is that Dr. Weber at Moffitt said that if I'm in-between treatments in Jax, he will have one of his associates at Mayo standing by to treat side effects, Dr. Richard Joseph. I'm anxious to hear the results of my HLA test to see if I am eligible for the anti-PD1 trial at Moffitt. If not, I'm thinking about the Mage trial (#2), IPI (#3), and as a last resort Peg Alpha Interferon. If you ever need to talk, just ask for my phone number and we can chat.
All the best,
Frank
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- September 11, 2012 at 3:44 pm
Thanks for the reply! I'm very happy I made the trip to Moffit, it opened up the immunology trial possbilities. What's nice is that Dr. Weber at Moffitt said that if I'm in-between treatments in Jax, he will have one of his associates at Mayo standing by to treat side effects, Dr. Richard Joseph. I'm anxious to hear the results of my HLA test to see if I am eligible for the anti-PD1 trial at Moffitt. If not, I'm thinking about the Mage trial (#2), IPI (#3), and as a last resort Peg Alpha Interferon. If you ever need to talk, just ask for my phone number and we can chat.
All the best,
Frank
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- September 11, 2012 at 4:07 pm
Dr Joseph is my oncologist at Mayo, and I really like him a lot. He was way better at explaining things to me than the onc at Baptist, and he treated me like a person and not a patient. Hopefully you will not have bad side effects and not have to see him, but if you do, he's great. In a couple weeks, I meet with him again, and start the process of trying to get into the clinical trial. He was very adamant about me taking my time to decide what to do. Well I hope you are able to get into your first choice of trial, we'll have to keep in touch! Thank you so much!
Mel
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- September 11, 2012 at 4:07 pm
Dr Joseph is my oncologist at Mayo, and I really like him a lot. He was way better at explaining things to me than the onc at Baptist, and he treated me like a person and not a patient. Hopefully you will not have bad side effects and not have to see him, but if you do, he's great. In a couple weeks, I meet with him again, and start the process of trying to get into the clinical trial. He was very adamant about me taking my time to decide what to do. Well I hope you are able to get into your first choice of trial, we'll have to keep in touch! Thank you so much!
Mel
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- September 11, 2012 at 4:07 pm
Dr Joseph is my oncologist at Mayo, and I really like him a lot. He was way better at explaining things to me than the onc at Baptist, and he treated me like a person and not a patient. Hopefully you will not have bad side effects and not have to see him, but if you do, he's great. In a couple weeks, I meet with him again, and start the process of trying to get into the clinical trial. He was very adamant about me taking my time to decide what to do. Well I hope you are able to get into your first choice of trial, we'll have to keep in touch! Thank you so much!
Mel
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- September 11, 2012 at 2:30 pm
Frank,
I don't have any advice for you, but I'm stage 3b and in the Jax area & my surgeon is at Baptist. My oncologist was, but I moved to Mayo Clinic. I'm hoping to get into the clinical trial comparing the ipi to interferon, and obviously hoping to get the ipi because of the low success rate of the interferon. I've already decided that if I get put into the interferon arm, I'll try it, but if it makes me sick, I'll quit. To me, being sick for a year isn't worth the 3-5% success rate. Anyway I know you were asking for advice and experience, but I just wanted to say good luck! I know how you feel with the whole "rolling the dice" thing, I do not like the idea of being randomized and not having control over the drug I get, but all of this is a reminder that I'm not always in control.
Best of luck choosing your treatment and getting healthier 🙂
Melissa
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- September 12, 2012 at 4:34 am
I would so go with the PD1 trial if you can get in. As things progress you may not have that option. Just my thoughts. 🙂
Ali
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- September 12, 2012 at 6:05 am
Frank, I'm in Jax, too, and seem to be on a similar path. Started trying to get in to Moffitt on my own yeterday (9/11) … and about to completely give up on my local onc … he won't call back. Were it not for smoen sending the report from my acutal PET scan and the pathologist last week during my biposy telling me I have MM, I wouldn't know what is going on.
My wife is absolutey panic stricken. We just had twin boys 41 days ago. (I know, I know, at my age I was asking for trouble.)
What did you decide on the trials? I had been treated almsot exactly 11 years ago for Hodgkins at Baptist and they were great … althouh, honstly … I'd trade MM for Hodgkins again anyday.
Anyway, good luck to you and if you want to talk, just give me a yell. Audgator told me about you and he's really a great source on information and encouragement and particualrly when it comes to Moffitt.
Ellis
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- September 12, 2012 at 6:05 am
Frank, I'm in Jax, too, and seem to be on a similar path. Started trying to get in to Moffitt on my own yeterday (9/11) … and about to completely give up on my local onc … he won't call back. Were it not for smoen sending the report from my acutal PET scan and the pathologist last week during my biposy telling me I have MM, I wouldn't know what is going on.
My wife is absolutey panic stricken. We just had twin boys 41 days ago. (I know, I know, at my age I was asking for trouble.)
What did you decide on the trials? I had been treated almsot exactly 11 years ago for Hodgkins at Baptist and they were great … althouh, honstly … I'd trade MM for Hodgkins again anyday.
Anyway, good luck to you and if you want to talk, just give me a yell. Audgator told me about you and he's really a great source on information and encouragement and particualrly when it comes to Moffitt.
Ellis
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- September 12, 2012 at 2:28 pm
Hi Ellis!
Thanks for the reply. Sorry to hear about your diagnosis. Even though I was devastated (along with the family), I'm getting more optimistic everyday. I'm going to battle and will kick some butt.
Wow! Twins? You and your wife have your hands full. I have two young grandchildren and I'm determined to see them graduate high school.
Here are my thoughts. I've been to the oncologist here in Jax twice. What says it all for me is that I felt like I was in death's waiting room. About twenty people in reception, no smiles, no talking, bags under the eyes, and blankets on their laps. It really mad me sad.
As a counterpoint, when I went to Moffitt, they have valet parking and the attendents smile and said "Great morning!". The reception area at Moffitt seemed full of life and hope. Patients seemed very happy and were on their iPads, joking, and talking. The staff at Moffitt is friendly and efficient. I can't say enough about Dr. Weber. He has a great sense of humor and never spoke down to me. He simply gave me the facts and told me the decision was mine to make. He even called the oncologist here in Jax to discuss my case. I will happily make the trip to Moffitt every couple of weeks for treatment. Dr. Weber has an associate at Mayo Clinic in Jax that can deal with the side effects as they arise.
I'm not saying that Moffitt is the answer for everyone. I understand that MD Anderson in Houston and Sloan Kettering are excellent melanoma treatment centers. For me, Moffitt is the closest and most practical. It's only a 3 hour drive from Jax.
This is a bumpy uncertain road. People try to empathize, but unless you've been through this, you don't understand. This forum is great, so many other people that understand and give input. I've been very busy the past month doing research. The kitchen here looks like a chemistry lab! I've changed my diet and exercize habits radically. I believe that there is a way to beat this with education, forum interaction, nutrition, good attitude, excercise, immunology treatment, and the staff at Moffitt. In fact, I've just bet my life on it.
If you need to talk, I'll be happy to give you my cell phone number.
All the best,
Frank
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- September 12, 2012 at 2:28 pm
Hi Ellis!
Thanks for the reply. Sorry to hear about your diagnosis. Even though I was devastated (along with the family), I'm getting more optimistic everyday. I'm going to battle and will kick some butt.
Wow! Twins? You and your wife have your hands full. I have two young grandchildren and I'm determined to see them graduate high school.
Here are my thoughts. I've been to the oncologist here in Jax twice. What says it all for me is that I felt like I was in death's waiting room. About twenty people in reception, no smiles, no talking, bags under the eyes, and blankets on their laps. It really mad me sad.
As a counterpoint, when I went to Moffitt, they have valet parking and the attendents smile and said "Great morning!". The reception area at Moffitt seemed full of life and hope. Patients seemed very happy and were on their iPads, joking, and talking. The staff at Moffitt is friendly and efficient. I can't say enough about Dr. Weber. He has a great sense of humor and never spoke down to me. He simply gave me the facts and told me the decision was mine to make. He even called the oncologist here in Jax to discuss my case. I will happily make the trip to Moffitt every couple of weeks for treatment. Dr. Weber has an associate at Mayo Clinic in Jax that can deal with the side effects as they arise.
I'm not saying that Moffitt is the answer for everyone. I understand that MD Anderson in Houston and Sloan Kettering are excellent melanoma treatment centers. For me, Moffitt is the closest and most practical. It's only a 3 hour drive from Jax.
This is a bumpy uncertain road. People try to empathize, but unless you've been through this, you don't understand. This forum is great, so many other people that understand and give input. I've been very busy the past month doing research. The kitchen here looks like a chemistry lab! I've changed my diet and exercize habits radically. I believe that there is a way to beat this with education, forum interaction, nutrition, good attitude, excercise, immunology treatment, and the staff at Moffitt. In fact, I've just bet my life on it.
If you need to talk, I'll be happy to give you my cell phone number.
All the best,
Frank
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- September 13, 2012 at 12:32 am
It sounds like ypu are going PD1 which would be my first choice. What I have come to understand as I travel this path is that trials are very restrictive, and all treatments do some permanent damage. But these class of drugs seem to be less damaging than others and trial spots will fill quickly.Yervoy will be there. I have a friend whose insurance covered it recently and he was NED, just FYI. Best of luck to you!
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- September 13, 2012 at 12:32 am
It sounds like ypu are going PD1 which would be my first choice. What I have come to understand as I travel this path is that trials are very restrictive, and all treatments do some permanent damage. But these class of drugs seem to be less damaging than others and trial spots will fill quickly.Yervoy will be there. I have a friend whose insurance covered it recently and he was NED, just FYI. Best of luck to you!
-
- September 13, 2012 at 12:32 am
It sounds like ypu are going PD1 which would be my first choice. What I have come to understand as I travel this path is that trials are very restrictive, and all treatments do some permanent damage. But these class of drugs seem to be less damaging than others and trial spots will fill quickly.Yervoy will be there. I have a friend whose insurance covered it recently and he was NED, just FYI. Best of luck to you!
-
- September 12, 2012 at 2:28 pm
Hi Ellis!
Thanks for the reply. Sorry to hear about your diagnosis. Even though I was devastated (along with the family), I'm getting more optimistic everyday. I'm going to battle and will kick some butt.
Wow! Twins? You and your wife have your hands full. I have two young grandchildren and I'm determined to see them graduate high school.
Here are my thoughts. I've been to the oncologist here in Jax twice. What says it all for me is that I felt like I was in death's waiting room. About twenty people in reception, no smiles, no talking, bags under the eyes, and blankets on their laps. It really mad me sad.
As a counterpoint, when I went to Moffitt, they have valet parking and the attendents smile and said "Great morning!". The reception area at Moffitt seemed full of life and hope. Patients seemed very happy and were on their iPads, joking, and talking. The staff at Moffitt is friendly and efficient. I can't say enough about Dr. Weber. He has a great sense of humor and never spoke down to me. He simply gave me the facts and told me the decision was mine to make. He even called the oncologist here in Jax to discuss my case. I will happily make the trip to Moffitt every couple of weeks for treatment. Dr. Weber has an associate at Mayo Clinic in Jax that can deal with the side effects as they arise.
I'm not saying that Moffitt is the answer for everyone. I understand that MD Anderson in Houston and Sloan Kettering are excellent melanoma treatment centers. For me, Moffitt is the closest and most practical. It's only a 3 hour drive from Jax.
This is a bumpy uncertain road. People try to empathize, but unless you've been through this, you don't understand. This forum is great, so many other people that understand and give input. I've been very busy the past month doing research. The kitchen here looks like a chemistry lab! I've changed my diet and exercize habits radically. I believe that there is a way to beat this with education, forum interaction, nutrition, good attitude, excercise, immunology treatment, and the staff at Moffitt. In fact, I've just bet my life on it.
If you need to talk, I'll be happy to give you my cell phone number.
All the best,
Frank
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- September 12, 2012 at 6:05 am
Frank, I'm in Jax, too, and seem to be on a similar path. Started trying to get in to Moffitt on my own yeterday (9/11) … and about to completely give up on my local onc … he won't call back. Were it not for smoen sending the report from my acutal PET scan and the pathologist last week during my biposy telling me I have MM, I wouldn't know what is going on.
My wife is absolutey panic stricken. We just had twin boys 41 days ago. (I know, I know, at my age I was asking for trouble.)
What did you decide on the trials? I had been treated almsot exactly 11 years ago for Hodgkins at Baptist and they were great … althouh, honstly … I'd trade MM for Hodgkins again anyday.
Anyway, good luck to you and if you want to talk, just give me a yell. Audgator told me about you and he's really a great source on information and encouragement and particualrly when it comes to Moffitt.
Ellis
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