› Forums › General Melanoma Community › Decision Time Stage IIIB
- This topic has 39 replies, 7 voices, and was last updated 11 years, 6 months ago by
Michelem.
- Post
-
- October 18, 2013 at 7:50 pm
I saw the Oncologist at UCLA today. Stage IIIB head and neck primary on ear with 2 nodes positive 9 months later, now parotidectomy and neck dissection….treatment options (and believe me I feel so blessed to HAVE options) are:
1.Radiation to head and neck
2.Interferon
3.Yervoy v interferon Trial
4.Zelboraf v placebo Trial
Due to timing and 2 different care facilities I am unable to do the radiation and the other treatment together.
I'm leaning toward one but interested in any information or thoughts as I want to use the weekend to decide.
Thanks in advance Matt
- Replies
-
-
- October 18, 2013 at 9:27 pm
Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours. I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.
From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi. If you get randomized to interferon you can make a personal decision about doing it or not. These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon). I was able to work full time during Ipi with moderate fatigue for the week after each infusion.
I would keep the braf drugs in your back pocket in case you need them later.
-
- October 18, 2013 at 11:04 pm
Radiation followed by the Yervoy vs interferon trial makes the most sense to me. I'm afraid that if you took the BRAF inhibitor your tumors might become resistant to it. Then where would you be at some future date if you really needed to slap down some tumors quickly?
-
- October 18, 2013 at 11:04 pm
Radiation followed by the Yervoy vs interferon trial makes the most sense to me. I'm afraid that if you took the BRAF inhibitor your tumors might become resistant to it. Then where would you be at some future date if you really needed to slap down some tumors quickly?
-
- October 18, 2013 at 11:04 pm
Radiation followed by the Yervoy vs interferon trial makes the most sense to me. I'm afraid that if you took the BRAF inhibitor your tumors might become resistant to it. Then where would you be at some future date if you really needed to slap down some tumors quickly?
-
- October 18, 2013 at 9:27 pm
Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours. I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.
From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi. If you get randomized to interferon you can make a personal decision about doing it or not. These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon). I was able to work full time during Ipi with moderate fatigue for the week after each infusion.
I would keep the braf drugs in your back pocket in case you need them later.
-
- October 18, 2013 at 9:27 pm
Matt, I did both radiation and interferon in summer 2012 after having a very similar procedure to yours. I ended up having a met in my lungs after all that and have had surgery and Ipi afterward and I have had good scans since my lung surgery.
From that experience I would say that I would enter the Ipi v. Interferon trial and hope for Ipi. If you get randomized to interferon you can make a personal decision about doing it or not. These drugs effect everyone differently and you may be able to tolerate the interferon better than I could — it knocked me out of of comission (28 y.o. male during Interferon). I was able to work full time during Ipi with moderate fatigue for the week after each infusion.
I would keep the braf drugs in your back pocket in case you need them later.
-
- October 18, 2013 at 11:01 pm
Since Yervoy (IPI) is FDA approved, your insurance company should pay for (IPI) and then you would not have to do a trial and be possibly randomized to Interferon. That's my 2 cents! Good Luck
-
- October 19, 2013 at 12:35 am
To my knowledge Ipi is only FDA approved for stage IV…the only approved standard treatment for stage 3a-c is Interferon…so you have to risk the random selection in order to get the Yervoy.
I look at it like if I get random Interferon then i just give it a try.
-
- October 19, 2013 at 3:14 am
Hey Matt,
My story is almost identical to above. Stage IIIB – radiation – IPI vs Interferon Trial – randomized to – interferon – did one year interferon – recurrance 4 months after completing interferon – now in Nivo/IPI sequential trial.
I signed up for the IPI vs Interferon trial in hopes of getting IPI. I knew the data sucked for interferon but decided there was some evidence that it could delay recurrence and I thought with all the advances occurring with treatment the longer I could hold it off the better. Who knows I may have recurred 12 months earlier if I hadn't done interferon and maybe I wouldn't have been able to get into a promising trial like the one I'm currently in.
BTW, I think IPI could be available for stage III if you were unresectable. I think the key is that you have to have present disease. I've had others on another forum tell me you could have IPI if you are stage IV NED but I was told no by a couple oncologist when I was Stage IV NED for a short time.
Good luck Matt. It's a tough choice for sure. What ever you do just make the choice and don't look back.
Brian
-
- October 19, 2013 at 3:14 am
Hey Matt,
My story is almost identical to above. Stage IIIB – radiation – IPI vs Interferon Trial – randomized to – interferon – did one year interferon – recurrance 4 months after completing interferon – now in Nivo/IPI sequential trial.
I signed up for the IPI vs Interferon trial in hopes of getting IPI. I knew the data sucked for interferon but decided there was some evidence that it could delay recurrence and I thought with all the advances occurring with treatment the longer I could hold it off the better. Who knows I may have recurred 12 months earlier if I hadn't done interferon and maybe I wouldn't have been able to get into a promising trial like the one I'm currently in.
BTW, I think IPI could be available for stage III if you were unresectable. I think the key is that you have to have present disease. I've had others on another forum tell me you could have IPI if you are stage IV NED but I was told no by a couple oncologist when I was Stage IV NED for a short time.
Good luck Matt. It's a tough choice for sure. What ever you do just make the choice and don't look back.
Brian
-
- October 19, 2013 at 3:14 am
Hey Matt,
My story is almost identical to above. Stage IIIB – radiation – IPI vs Interferon Trial – randomized to – interferon – did one year interferon – recurrance 4 months after completing interferon – now in Nivo/IPI sequential trial.
I signed up for the IPI vs Interferon trial in hopes of getting IPI. I knew the data sucked for interferon but decided there was some evidence that it could delay recurrence and I thought with all the advances occurring with treatment the longer I could hold it off the better. Who knows I may have recurred 12 months earlier if I hadn't done interferon and maybe I wouldn't have been able to get into a promising trial like the one I'm currently in.
BTW, I think IPI could be available for stage III if you were unresectable. I think the key is that you have to have present disease. I've had others on another forum tell me you could have IPI if you are stage IV NED but I was told no by a couple oncologist when I was Stage IV NED for a short time.
Good luck Matt. It's a tough choice for sure. What ever you do just make the choice and don't look back.
Brian
-
- October 19, 2013 at 12:35 am
To my knowledge Ipi is only FDA approved for stage IV…the only approved standard treatment for stage 3a-c is Interferon…so you have to risk the random selection in order to get the Yervoy.
I look at it like if I get random Interferon then i just give it a try.
-
- October 19, 2013 at 12:35 am
To my knowledge Ipi is only FDA approved for stage IV…the only approved standard treatment for stage 3a-c is Interferon…so you have to risk the random selection in order to get the Yervoy.
I look at it like if I get random Interferon then i just give it a try.
-
- October 19, 2013 at 3:45 am
Great info thank you everyone.
Just a question….do Clinical Trials have to be approved by your insurance even though there is no cost for trial itself?
I'm curious because i don't want to cancel my radiation appt until i know If i can actually do the trial that has been offered to me.
-
- October 20, 2013 at 1:05 am
Matt,
You'll have to check with your insurance company for sure before you make your decisions. I have two insurance providers. My primary is Blue Cross/Blue Shield and they do not cover anything associated with a clincal trial. Fortunately my secondary does (TRICARE) or I would have been screwed.
Brian
-
- October 20, 2013 at 1:05 am
Matt,
You'll have to check with your insurance company for sure before you make your decisions. I have two insurance providers. My primary is Blue Cross/Blue Shield and they do not cover anything associated with a clincal trial. Fortunately my secondary does (TRICARE) or I would have been screwed.
Brian
-
- October 20, 2013 at 5:44 am
Brian,
Technically i only have one insurance but I have 2 healthcare plans.
1. Tricare – United Health Care Military / Veterans Retiree Prime
2. VA Healthcare System
My gues is I can check with the insurance company and see what they say and then fall back on anything that is wrong with me will get treated at the VA
-
- October 20, 2013 at 5:44 am
Brian,
Technically i only have one insurance but I have 2 healthcare plans.
1. Tricare – United Health Care Military / Veterans Retiree Prime
2. VA Healthcare System
My gues is I can check with the insurance company and see what they say and then fall back on anything that is wrong with me will get treated at the VA
-
- October 20, 2013 at 8:13 am
I think the way it works is that the pharmaceutical company pays for everything directly related to the clinical trial (they may also cover some travel and hotel costs, depending on the trial) and they expect your health insurance company to cover any "custsomary and usual expenses" associated with treating your condition even if you were not in a clinical trial. The problem comes in when trying to define "customary and usual expenses". The clnical trial may want you to have an MRI immediately before enrolling in the trial, for example, but your insuranc company doesn't think you need an MRI now so they won't pay for it.
The best thing to do is to call the clinical trial coordinator and ask him/her to find out what your insurance company will cover. Most clinical trials try very hard to help everybody who wants to participate in a trial do so. They do have some flex– the clinical trial may cover the cost of a pre-enrollment MRI, for example, if that is the only thing keeping you from enrolling. Usually, the only financial burden to the patient is the cost of travel and lodging. So check with the clinical trial coordinator.
-
- October 20, 2013 at 8:13 am
I think the way it works is that the pharmaceutical company pays for everything directly related to the clinical trial (they may also cover some travel and hotel costs, depending on the trial) and they expect your health insurance company to cover any "custsomary and usual expenses" associated with treating your condition even if you were not in a clinical trial. The problem comes in when trying to define "customary and usual expenses". The clnical trial may want you to have an MRI immediately before enrolling in the trial, for example, but your insuranc company doesn't think you need an MRI now so they won't pay for it.
The best thing to do is to call the clinical trial coordinator and ask him/her to find out what your insurance company will cover. Most clinical trials try very hard to help everybody who wants to participate in a trial do so. They do have some flex– the clinical trial may cover the cost of a pre-enrollment MRI, for example, if that is the only thing keeping you from enrolling. Usually, the only financial burden to the patient is the cost of travel and lodging. So check with the clinical trial coordinator.
-
- October 20, 2013 at 8:13 am
I think the way it works is that the pharmaceutical company pays for everything directly related to the clinical trial (they may also cover some travel and hotel costs, depending on the trial) and they expect your health insurance company to cover any "custsomary and usual expenses" associated with treating your condition even if you were not in a clinical trial. The problem comes in when trying to define "customary and usual expenses". The clnical trial may want you to have an MRI immediately before enrolling in the trial, for example, but your insuranc company doesn't think you need an MRI now so they won't pay for it.
The best thing to do is to call the clinical trial coordinator and ask him/her to find out what your insurance company will cover. Most clinical trials try very hard to help everybody who wants to participate in a trial do so. They do have some flex– the clinical trial may cover the cost of a pre-enrollment MRI, for example, if that is the only thing keeping you from enrolling. Usually, the only financial burden to the patient is the cost of travel and lodging. So check with the clinical trial coordinator.
-
- October 20, 2013 at 5:44 am
Brian,
Technically i only have one insurance but I have 2 healthcare plans.
1. Tricare – United Health Care Military / Veterans Retiree Prime
2. VA Healthcare System
My gues is I can check with the insurance company and see what they say and then fall back on anything that is wrong with me will get treated at the VA
-
- October 20, 2013 at 1:05 am
Matt,
You'll have to check with your insurance company for sure before you make your decisions. I have two insurance providers. My primary is Blue Cross/Blue Shield and they do not cover anything associated with a clincal trial. Fortunately my secondary does (TRICARE) or I would have been screwed.
Brian
-
- October 20, 2013 at 1:38 pm
Hello Matt,
My husband participates in a clinical trial for the Yervoy (Ipi) and has for over 2 1/2 years. He has Blue Cross and because in a clinical trial they only pay for scans, doctor visits and blood tests as they would even if not in a clinical trial they pay as they always did.
Yervoy was not approved by the FDA when he started in this trial.
Judy (loving wife of Gene Stage IV and now NED)
-
- October 20, 2013 at 1:38 pm
Hello Matt,
My husband participates in a clinical trial for the Yervoy (Ipi) and has for over 2 1/2 years. He has Blue Cross and because in a clinical trial they only pay for scans, doctor visits and blood tests as they would even if not in a clinical trial they pay as they always did.
Yervoy was not approved by the FDA when he started in this trial.
Judy (loving wife of Gene Stage IV and now NED)
-
- October 20, 2013 at 1:38 pm
Hello Matt,
My husband participates in a clinical trial for the Yervoy (Ipi) and has for over 2 1/2 years. He has Blue Cross and because in a clinical trial they only pay for scans, doctor visits and blood tests as they would even if not in a clinical trial they pay as they always did.
Yervoy was not approved by the FDA when he started in this trial.
Judy (loving wife of Gene Stage IV and now NED)
-
- October 19, 2013 at 3:45 am
Great info thank you everyone.
Just a question….do Clinical Trials have to be approved by your insurance even though there is no cost for trial itself?
I'm curious because i don't want to cancel my radiation appt until i know If i can actually do the trial that has been offered to me.
-
- October 19, 2013 at 3:45 am
Great info thank you everyone.
Just a question….do Clinical Trials have to be approved by your insurance even though there is no cost for trial itself?
I'm curious because i don't want to cancel my radiation appt until i know If i can actually do the trial that has been offered to me.
-
- October 20, 2013 at 7:12 pm
Matt,
Pat's and Judy's replies seem to echo what I have been told. Having not had to use BC/BS for my trial treatment I'm not sure how much out of pocket expense I would have had. My TRICARE is also military retired. They have a clinical trial coordinator/liaison that helps with all the clinical trial authorization stuff. They have been awesome. If you want their contact info message me and I'll send you their phone numbers and email addresses.
Brian
-
- October 20, 2013 at 7:12 pm
Matt,
Pat's and Judy's replies seem to echo what I have been told. Having not had to use BC/BS for my trial treatment I'm not sure how much out of pocket expense I would have had. My TRICARE is also military retired. They have a clinical trial coordinator/liaison that helps with all the clinical trial authorization stuff. They have been awesome. If you want their contact info message me and I'll send you their phone numbers and email addresses.
Brian
-
- October 31, 2013 at 6:01 pm
Glad to see other TriCare folks here – my husband is retired Army and now on MediCare with TriCare secondary. Just had surgery so we have yet to learn what the recommended medica regime will be – though it sounds like we should shoot for a Clinical Trial if possible. He is IIIB.
-
- October 31, 2013 at 6:01 pm
Glad to see other TriCare folks here – my husband is retired Army and now on MediCare with TriCare secondary. Just had surgery so we have yet to learn what the recommended medica regime will be – though it sounds like we should shoot for a Clinical Trial if possible. He is IIIB.
-
- October 31, 2013 at 6:01 pm
Glad to see other TriCare folks here – my husband is retired Army and now on MediCare with TriCare secondary. Just had surgery so we have yet to learn what the recommended medica regime will be – though it sounds like we should shoot for a Clinical Trial if possible. He is IIIB.
-
- October 20, 2013 at 7:12 pm
Matt,
Pat's and Judy's replies seem to echo what I have been told. Having not had to use BC/BS for my trial treatment I'm not sure how much out of pocket expense I would have had. My TRICARE is also military retired. They have a clinical trial coordinator/liaison that helps with all the clinical trial authorization stuff. They have been awesome. If you want their contact info message me and I'll send you their phone numbers and email addresses.
Brian
-
- You must be logged in to reply to this topic.