› Forums › General Melanoma Community › Time limit?
- This topic has 57 replies, 7 voices, and was last updated 10 years, 3 months ago by
Marianne quinn.
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- November 28, 2015 at 4:19 pm
Hello,
I just finished my first surgery(clnd) and will be transferring doctors. Is there a certain time limit where you have to start a drug or the insurance will deny you? (Interferon or yervoy seems like my only options for stage 3) Is there a timetable on how fast you have to start systemic treatment after a clnd of armpit?Thank you
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- November 28, 2015 at 6:03 pm
That should be a question for your Medical Oncologist. I think the Yervoy treatment will be easier for you if you choose that path. Interferon will just have you sick for a year and will do nothing to cure melanoma. You should however read this post about Yervoy at stage III and talk it over with your Doc.
Tom
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
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- November 28, 2015 at 6:03 pm
That should be a question for your Medical Oncologist. I think the Yervoy treatment will be easier for you if you choose that path. Interferon will just have you sick for a year and will do nothing to cure melanoma. You should however read this post about Yervoy at stage III and talk it over with your Doc.
Tom
Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
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- November 28, 2015 at 6:15 pm
I’ve read that about Yervoy that’s why i might want to wait. I’m just a little scared of those extreme side effects. But from what I understand that is from the 10mg dose. I think most have been doing the 3mg dose. I’m ulcerated so that’s why I’m leaving the option of interferon open. I don’t think I’m comfortable with watch and wait. What are you doing to stop reoccurrance? -
- November 28, 2015 at 6:15 pm
I’ve read that about Yervoy that’s why i might want to wait. I’m just a little scared of those extreme side effects. But from what I understand that is from the 10mg dose. I think most have been doing the 3mg dose. I’m ulcerated so that’s why I’m leaving the option of interferon open. I don’t think I’m comfortable with watch and wait. What are you doing to stop reoccurrance? -
- November 28, 2015 at 9:06 pm
I can only speak for myself, of course, but the side effects of Yervoy weren't that bad. Nowhere near as bad for me as the one dose of interferon I took. I got the 4 treatment course of Yervoy last winter, and during treatment the worst side effect I dealt with was the typical itchy rash that put me on prednisone for about 4 months. Now, about three weeks after my last infusion I did have some gastric problems that were unpleasant, and caused me to not be able to eat much. But those went away after about a month.
And regarding dose….I don't think they do the 10mg dose outside of a trial. The standard dose is 3mg/kg
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- November 28, 2015 at 9:06 pm
I can only speak for myself, of course, but the side effects of Yervoy weren't that bad. Nowhere near as bad for me as the one dose of interferon I took. I got the 4 treatment course of Yervoy last winter, and during treatment the worst side effect I dealt with was the typical itchy rash that put me on prednisone for about 4 months. Now, about three weeks after my last infusion I did have some gastric problems that were unpleasant, and caused me to not be able to eat much. But those went away after about a month.
And regarding dose….I don't think they do the 10mg dose outside of a trial. The standard dose is 3mg/kg
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- November 28, 2015 at 9:06 pm
I can only speak for myself, of course, but the side effects of Yervoy weren't that bad. Nowhere near as bad for me as the one dose of interferon I took. I got the 4 treatment course of Yervoy last winter, and during treatment the worst side effect I dealt with was the typical itchy rash that put me on prednisone for about 4 months. Now, about three weeks after my last infusion I did have some gastric problems that were unpleasant, and caused me to not be able to eat much. But those went away after about a month.
And regarding dose….I don't think they do the 10mg dose outside of a trial. The standard dose is 3mg/kg
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- November 29, 2015 at 12:39 am
I got on the ipi/nivo trial. My dose of ipi is 10mg But I think I am getting the nivo. My side effects have been minor rash and back pain. I am cancer free after 13 weeks of treatment. I would consult a melanoma specialist before getting interferon. 3 of my docs said one year of treatment will just get you sick and only extend your life 2 months. It will not cure you and at best has a 8 percent success rate. If the option is yervoy or interferon I myself would pick yervoy.
Tom
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- November 29, 2015 at 12:39 am
I got on the ipi/nivo trial. My dose of ipi is 10mg But I think I am getting the nivo. My side effects have been minor rash and back pain. I am cancer free after 13 weeks of treatment. I would consult a melanoma specialist before getting interferon. 3 of my docs said one year of treatment will just get you sick and only extend your life 2 months. It will not cure you and at best has a 8 percent success rate. If the option is yervoy or interferon I myself would pick yervoy.
Tom
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- November 29, 2015 at 12:56 pm
Thanks for the replies. This disease sucks and I’m just looking to see what people are taking nowadays so I don’t reoccurr sine I’m 3b and will have a higher rate of reoccurrance even though I only had micro in my node but my tumor was ulcerated. Greg -
- November 29, 2015 at 12:56 pm
Thanks for the replies. This disease sucks and I’m just looking to see what people are taking nowadays so I don’t reoccurr sine I’m 3b and will have a higher rate of reoccurrance even though I only had micro in my node but my tumor was ulcerated. Greg -
- November 29, 2015 at 12:56 pm
Thanks for the replies. This disease sucks and I’m just looking to see what people are taking nowadays so I don’t reoccurr sine I’m 3b and will have a higher rate of reoccurrance even though I only had micro in my node but my tumor was ulcerated. Greg -
- November 29, 2015 at 5:12 pm
On that exact question of 10 mg versus 3 mg for Adjunctive therapies. My doctor said he could prescribe 3 mg …not the 10 mg. (and would)
From what I ready in the results of that specific study (10 mg)…I wouldn't take risk (death and other significant Grade 3/4 side effects among them). If the benefit to Stage 4 patients is good at 3 mg, why would a Stage 3 patient risk it?
And this is from the guy that is just finishing Interferon treatments for a year (and NED). It wasn't fun but it was survivable. (7 more shots to go)
The FDA approved that 10 mg dosage because the study was based upon that….but it doesn't mean it is right when other studies showed equal results at safer/lower dosages.
All the best…Michel
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- November 29, 2015 at 5:12 pm
On that exact question of 10 mg versus 3 mg for Adjunctive therapies. My doctor said he could prescribe 3 mg …not the 10 mg. (and would)
From what I ready in the results of that specific study (10 mg)…I wouldn't take risk (death and other significant Grade 3/4 side effects among them). If the benefit to Stage 4 patients is good at 3 mg, why would a Stage 3 patient risk it?
And this is from the guy that is just finishing Interferon treatments for a year (and NED). It wasn't fun but it was survivable. (7 more shots to go)
The FDA approved that 10 mg dosage because the study was based upon that….but it doesn't mean it is right when other studies showed equal results at safer/lower dosages.
All the best…Michel
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- November 29, 2015 at 5:12 pm
On that exact question of 10 mg versus 3 mg for Adjunctive therapies. My doctor said he could prescribe 3 mg …not the 10 mg. (and would)
From what I ready in the results of that specific study (10 mg)…I wouldn't take risk (death and other significant Grade 3/4 side effects among them). If the benefit to Stage 4 patients is good at 3 mg, why would a Stage 3 patient risk it?
And this is from the guy that is just finishing Interferon treatments for a year (and NED). It wasn't fun but it was survivable. (7 more shots to go)
The FDA approved that 10 mg dosage because the study was based upon that….but it doesn't mean it is right when other studies showed equal results at safer/lower dosages.
All the best…Michel
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- November 29, 2015 at 6:41 pm
Greg – Interferon is a very emotional topic for folks. I was diagnosed 13 months ago as a 3A. At that time, all of the newly approved options were for Stage 4. There were some clinical trials for 3B and 3C but very limited options for 3A (primarily vaccines).
To answer your question…it was tough for sure. The first 4 week induction phase almost took me down but the maintenance period 11 months wasn't nearly as bad. Yes it wears on you but with some thoughtful planning I was able to travel and live a life at about 80% speed.
But would I do it again, the answer would be no. The whole idea was to avoid going to Stage 4 for as long as possible to let the new treatment options progress and that they have. The primary clinical benefit of Interferon was to delay reoccurrence by 6-7 months and while we can't say for sure that Interferon was the cause…I am still NED 13 months later.
Since you are 3B, I would take a serious look at doing something. Try the IPI (at 3 mg) or a clinical trial. You probably know the numbers for survival with 3B…and with the new options there are certainly going to get better….but you have to do something to be part of that rapidly improving prognosis.
The one thing about Interferon is that it is highly predictable in terms of what happens after 2 hours, 4 hours, 12 hours, 24 hours…etc…if you want to know more about that send me a private message.
Best of luck
Michel
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- November 29, 2015 at 6:41 pm
Greg – Interferon is a very emotional topic for folks. I was diagnosed 13 months ago as a 3A. At that time, all of the newly approved options were for Stage 4. There were some clinical trials for 3B and 3C but very limited options for 3A (primarily vaccines).
To answer your question…it was tough for sure. The first 4 week induction phase almost took me down but the maintenance period 11 months wasn't nearly as bad. Yes it wears on you but with some thoughtful planning I was able to travel and live a life at about 80% speed.
But would I do it again, the answer would be no. The whole idea was to avoid going to Stage 4 for as long as possible to let the new treatment options progress and that they have. The primary clinical benefit of Interferon was to delay reoccurrence by 6-7 months and while we can't say for sure that Interferon was the cause…I am still NED 13 months later.
Since you are 3B, I would take a serious look at doing something. Try the IPI (at 3 mg) or a clinical trial. You probably know the numbers for survival with 3B…and with the new options there are certainly going to get better….but you have to do something to be part of that rapidly improving prognosis.
The one thing about Interferon is that it is highly predictable in terms of what happens after 2 hours, 4 hours, 12 hours, 24 hours…etc…if you want to know more about that send me a private message.
Best of luck
Michel
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- November 29, 2015 at 6:41 pm
Greg – Interferon is a very emotional topic for folks. I was diagnosed 13 months ago as a 3A. At that time, all of the newly approved options were for Stage 4. There were some clinical trials for 3B and 3C but very limited options for 3A (primarily vaccines).
To answer your question…it was tough for sure. The first 4 week induction phase almost took me down but the maintenance period 11 months wasn't nearly as bad. Yes it wears on you but with some thoughtful planning I was able to travel and live a life at about 80% speed.
But would I do it again, the answer would be no. The whole idea was to avoid going to Stage 4 for as long as possible to let the new treatment options progress and that they have. The primary clinical benefit of Interferon was to delay reoccurrence by 6-7 months and while we can't say for sure that Interferon was the cause…I am still NED 13 months later.
Since you are 3B, I would take a serious look at doing something. Try the IPI (at 3 mg) or a clinical trial. You probably know the numbers for survival with 3B…and with the new options there are certainly going to get better….but you have to do something to be part of that rapidly improving prognosis.
The one thing about Interferon is that it is highly predictable in terms of what happens after 2 hours, 4 hours, 12 hours, 24 hours…etc…if you want to know more about that send me a private message.
Best of luck
Michel
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- November 29, 2015 at 7:53 pm
Well I try not to look at statistics but have seen them. There’s so many variables depth , ulceration,nodal involvement,and overall health that I am my own individual person and not a statistic. Alot of those statistics correct me if I’m wrong are based between 1998 and 2008. So they are outdated. I would like to think those overall statistics would have at least improved 10 to 15 percent with all these new drugs and even surgeries to remove tumors. Gamma and cyber knife. I just have to stay positive.
Greg -
- November 29, 2015 at 7:53 pm
Well I try not to look at statistics but have seen them. There’s so many variables depth , ulceration,nodal involvement,and overall health that I am my own individual person and not a statistic. Alot of those statistics correct me if I’m wrong are based between 1998 and 2008. So they are outdated. I would like to think those overall statistics would have at least improved 10 to 15 percent with all these new drugs and even surgeries to remove tumors. Gamma and cyber knife. I just have to stay positive.
Greg -
- November 29, 2015 at 7:53 pm
Well I try not to look at statistics but have seen them. There’s so many variables depth , ulceration,nodal involvement,and overall health that I am my own individual person and not a statistic. Alot of those statistics correct me if I’m wrong are based between 1998 and 2008. So they are outdated. I would like to think those overall statistics would have at least improved 10 to 15 percent with all these new drugs and even surgeries to remove tumors. Gamma and cyber knife. I just have to stay positive.
Greg -
- November 29, 2015 at 9:22 pm
HI Greg-
As another 3B here, I have to agree with you…or at least certainly hope you are right!!! I think you are from everyone i've spoken to.
Cant wait to see when they finally do update those STATS….hopefully we will be pleasantly surprised and many of us have the potential for long term survival!!!!!!
best,
jenny
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- November 29, 2015 at 9:22 pm
HI Greg-
As another 3B here, I have to agree with you…or at least certainly hope you are right!!! I think you are from everyone i've spoken to.
Cant wait to see when they finally do update those STATS….hopefully we will be pleasantly surprised and many of us have the potential for long term survival!!!!!!
best,
jenny
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- November 29, 2015 at 9:22 pm
HI Greg-
As another 3B here, I have to agree with you…or at least certainly hope you are right!!! I think you are from everyone i've spoken to.
Cant wait to see when they finally do update those STATS….hopefully we will be pleasantly surprised and many of us have the potential for long term survival!!!!!!
best,
jenny
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- November 29, 2015 at 9:47 pm
Greg – absolutely not trying to scare you with the statistics because the world has gotten significantly better for melanoma stage 3/4 patients with all of the new treatments. Just a few years ago…it was almost a death sentence with the average Stage 4 patient lasting 6-10 months. (that is not true any more…we just don't have new numbers that reflect today's reality)
But I would encourage action of some because you are in a very high risk category for reoccurrence. Watch and wait is not something that I could live with…do I regret my choice for Interferon…no way it was the best option available for late 2014. Would I do it again in 2015/16…no way.
The difference between your situation and mine of a year ago was that you now have options that didn't exist just a year ago. At 34 you are very young…get educated…get with the right specialist…and take control of as many options as you can.
A year ago…I was crying myself to sleep every night…now I live with scan anxiety in a much more positive context. I am also looking at 2016 as being a real opportunity for being a good year.
All the best
Michel
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- November 29, 2015 at 9:47 pm
Greg – absolutely not trying to scare you with the statistics because the world has gotten significantly better for melanoma stage 3/4 patients with all of the new treatments. Just a few years ago…it was almost a death sentence with the average Stage 4 patient lasting 6-10 months. (that is not true any more…we just don't have new numbers that reflect today's reality)
But I would encourage action of some because you are in a very high risk category for reoccurrence. Watch and wait is not something that I could live with…do I regret my choice for Interferon…no way it was the best option available for late 2014. Would I do it again in 2015/16…no way.
The difference between your situation and mine of a year ago was that you now have options that didn't exist just a year ago. At 34 you are very young…get educated…get with the right specialist…and take control of as many options as you can.
A year ago…I was crying myself to sleep every night…now I live with scan anxiety in a much more positive context. I am also looking at 2016 as being a real opportunity for being a good year.
All the best
Michel
-
- November 29, 2015 at 9:47 pm
Greg – absolutely not trying to scare you with the statistics because the world has gotten significantly better for melanoma stage 3/4 patients with all of the new treatments. Just a few years ago…it was almost a death sentence with the average Stage 4 patient lasting 6-10 months. (that is not true any more…we just don't have new numbers that reflect today's reality)
But I would encourage action of some because you are in a very high risk category for reoccurrence. Watch and wait is not something that I could live with…do I regret my choice for Interferon…no way it was the best option available for late 2014. Would I do it again in 2015/16…no way.
The difference between your situation and mine of a year ago was that you now have options that didn't exist just a year ago. At 34 you are very young…get educated…get with the right specialist…and take control of as many options as you can.
A year ago…I was crying myself to sleep every night…now I live with scan anxiety in a much more positive context. I am also looking at 2016 as being a real opportunity for being a good year.
All the best
Michel
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- November 29, 2015 at 11:49 pm
I understand and I would not do watch and wait. I’m hoping yervoy, or maybe a yervoy/nivo combo is offered to me. If not and they tell me interferon I think I would do it knowing that it sucks. I’m prepared to do anything to combat this. My sister friends Dad has had stage 4 melanoma for 18 years. He does not blog though so that’s why I think we read more negative stories then positive ones on this site.
Thanks for the advice
Greg -
- November 29, 2015 at 11:49 pm
I understand and I would not do watch and wait. I’m hoping yervoy, or maybe a yervoy/nivo combo is offered to me. If not and they tell me interferon I think I would do it knowing that it sucks. I’m prepared to do anything to combat this. My sister friends Dad has had stage 4 melanoma for 18 years. He does not blog though so that’s why I think we read more negative stories then positive ones on this site.
Thanks for the advice
Greg -
- November 29, 2015 at 11:49 pm
I understand and I would not do watch and wait. I’m hoping yervoy, or maybe a yervoy/nivo combo is offered to me. If not and they tell me interferon I think I would do it knowing that it sucks. I’m prepared to do anything to combat this. My sister friends Dad has had stage 4 melanoma for 18 years. He does not blog though so that’s why I think we read more negative stories then positive ones on this site.
Thanks for the advice
Greg -
- November 29, 2015 at 6:41 pm
I whole heartedly agree..and am in the EXACT same boat….The risk of those side effects is significant….particularly for a stage 3 patient….not sure if there is data that supports its benefit at the 3mg/kg in the adjuvant setting but I would be interested to hear more about that.
My DOC has already said she would not reccommend IPI (at least not at the 10mg/kg) for me, and 2nd opinon at SLOAN was same.
I am going to post a separate update on this….
Thanks Michel!
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- November 29, 2015 at 6:41 pm
I whole heartedly agree..and am in the EXACT same boat….The risk of those side effects is significant….particularly for a stage 3 patient….not sure if there is data that supports its benefit at the 3mg/kg in the adjuvant setting but I would be interested to hear more about that.
My DOC has already said she would not reccommend IPI (at least not at the 10mg/kg) for me, and 2nd opinon at SLOAN was same.
I am going to post a separate update on this….
Thanks Michel!
-
- November 29, 2015 at 6:41 pm
I whole heartedly agree..and am in the EXACT same boat….The risk of those side effects is significant….particularly for a stage 3 patient….not sure if there is data that supports its benefit at the 3mg/kg in the adjuvant setting but I would be interested to hear more about that.
My DOC has already said she would not reccommend IPI (at least not at the 10mg/kg) for me, and 2nd opinon at SLOAN was same.
I am going to post a separate update on this….
Thanks Michel!
-
- December 1, 2015 at 5:36 am
My husband was 3c . Was in the interferon vs ipi trial. He is NED after 4 infusions of 10 mg ipi. He was diagnosed in September 2013. Side effects are manageable. We are so glad he did it but it was a lot more scary making the decision than it was actually taking it. It is generally a better ide to start immunotherapy when your tumor burden is low. Good luck
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- December 1, 2015 at 5:36 am
My husband was 3c . Was in the interferon vs ipi trial. He is NED after 4 infusions of 10 mg ipi. He was diagnosed in September 2013. Side effects are manageable. We are so glad he did it but it was a lot more scary making the decision than it was actually taking it. It is generally a better ide to start immunotherapy when your tumor burden is low. Good luck
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- December 1, 2015 at 5:36 am
My husband was 3c . Was in the interferon vs ipi trial. He is NED after 4 infusions of 10 mg ipi. He was diagnosed in September 2013. Side effects are manageable. We are so glad he did it but it was a lot more scary making the decision than it was actually taking it. It is generally a better ide to start immunotherapy when your tumor burden is low. Good luck
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- November 29, 2015 at 12:39 am
I got on the ipi/nivo trial. My dose of ipi is 10mg But I think I am getting the nivo. My side effects have been minor rash and back pain. I am cancer free after 13 weeks of treatment. I would consult a melanoma specialist before getting interferon. 3 of my docs said one year of treatment will just get you sick and only extend your life 2 months. It will not cure you and at best has a 8 percent success rate. If the option is yervoy or interferon I myself would pick yervoy.
Tom
-
- November 28, 2015 at 6:15 pm
I’ve read that about Yervoy that’s why i might want to wait. I’m just a little scared of those extreme side effects. But from what I understand that is from the 10mg dose. I think most have been doing the 3mg dose. I’m ulcerated so that’s why I’m leaving the option of interferon open. I don’t think I’m comfortable with watch and wait. What are you doing to stop reoccurrance?
-
- November 28, 2015 at 6:03 pm
That should be a question for your Medical Oncologist. I think the Yervoy treatment will be easier for you if you choose that path. Interferon will just have you sick for a year and will do nothing to cure melanoma. You should however read this post about Yervoy at stage III and talk it over with your Doc.
Tom
Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)
Here is something to think about that my oncologist Dr Jason Luke had about ipi as adjuvant. Ipi has shown a 25% success rate as an adjuvant and a 22% success rate in stage 4. He sees no statistical advantage to taking it as adjuvant because the side effects can be severe. His opinion is why put yourself through the chance of immune related events when there is a chance the cancer may not return. If it does you statistically have the same chance of responding. I hope the pd-1 drugs show a much better efficacy as adjuvant therapy which remains to be seen.
-
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Re: FDA Approves Ipilimumab for Stage III Melanoma Patients
jamieth29 – (10/28/2015 – 8:55pm)