› Forums › General Melanoma Community › Stage 3a only option interferon
- This topic has 39 replies, 10 voices, and was last updated 9 years, 4 months ago by
debwray.
- Post
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- July 12, 2016 at 8:20 pm
Hello,
I do not qualify for a clinical trial Dr. John Kirkwood from Hillman Cancer Center is running because I am only Stage 3a … I needed two lymph nodes positive for melanoma and I only had 1 positive. I am also BRAF negative. Hillman Cancer Center is saying the only option for me right now is Interferon. They are saying my insurance company will not pay for adjuvant therapy in Stage 3. I do not want to do interferon, nor does my local oncologist want to give it to me.
My local onolcogist recommended I go to clinicaltrials.gov and find a clinical trial or call Cleveland Clinic to see if they have any options for me. They are going to call their Merek and Bristol Myers reps to see if there is any way to get me the adjuvant therapy drugs. I am beyond frustrated at this point.
My oncologist's did not even try to call my insurance company to see if anything would be covered … is this normal?
Does anyone have any suggestions?
I did find two clinical trials. But the one is located in RI and the other is being offered in MO, IA and GA. I live in PA.
Thanks in advance!
- Replies
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- July 12, 2016 at 9:27 pm
Hi,
My husband, Bill was a patient of Dr. Kirkwood's for the Ipi/Nivo trial. He's a wonderful man, but he is VERY pro interferon and my Bill was on HD interferon for three months at a different center when he found out he was stage four. He was miserable the whole time he was on interferon. If you look at the statistics there is no viable reason to do it. Please listen to your local oncologist and find another trial. Dr Kirkwood's life work is on trying to make interferon work. He is very biased to interferon. I remember vividly watching patients who were on a Ipi / interferon trial being terribly uncomfortable with horrible rashes. Please try to find a trial with Ipi or watch and wait. Good luck!!
Maureen
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- July 12, 2016 at 9:27 pm
Hi,
My husband, Bill was a patient of Dr. Kirkwood's for the Ipi/Nivo trial. He's a wonderful man, but he is VERY pro interferon and my Bill was on HD interferon for three months at a different center when he found out he was stage four. He was miserable the whole time he was on interferon. If you look at the statistics there is no viable reason to do it. Please listen to your local oncologist and find another trial. Dr Kirkwood's life work is on trying to make interferon work. He is very biased to interferon. I remember vividly watching patients who were on a Ipi / interferon trial being terribly uncomfortable with horrible rashes. Please try to find a trial with Ipi or watch and wait. Good luck!!
Maureen
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- July 12, 2016 at 9:27 pm
Hi,
My husband, Bill was a patient of Dr. Kirkwood's for the Ipi/Nivo trial. He's a wonderful man, but he is VERY pro interferon and my Bill was on HD interferon for three months at a different center when he found out he was stage four. He was miserable the whole time he was on interferon. If you look at the statistics there is no viable reason to do it. Please listen to your local oncologist and find another trial. Dr Kirkwood's life work is on trying to make interferon work. He is very biased to interferon. I remember vividly watching patients who were on a Ipi / interferon trial being terribly uncomfortable with horrible rashes. Please try to find a trial with Ipi or watch and wait. Good luck!!
Maureen
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- July 12, 2016 at 9:55 pm
This was me a year ago. There was no clinical trial option that worked for me for different reasons. My onc suggested Interferon or watch and wait. I am not a fan of watch and wait so I got a 2nd opinion. Once again, the clinical trials were ruled out. Also, Yervoy did not have FDA approval at that time. My Mayo onc suggested Leukine. No where near the side effect of Interferon. They claim it does the same thing as Interferon. What that is, no one really knows, but it was better for me to at least do something other than watch and wait. I am not recommending either, but if you are left with only that choice don't do Interferon. The side effects are not worth it.
Brad – Stage 3B
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- July 12, 2016 at 9:55 pm
This was me a year ago. There was no clinical trial option that worked for me for different reasons. My onc suggested Interferon or watch and wait. I am not a fan of watch and wait so I got a 2nd opinion. Once again, the clinical trials were ruled out. Also, Yervoy did not have FDA approval at that time. My Mayo onc suggested Leukine. No where near the side effect of Interferon. They claim it does the same thing as Interferon. What that is, no one really knows, but it was better for me to at least do something other than watch and wait. I am not recommending either, but if you are left with only that choice don't do Interferon. The side effects are not worth it.
Brad – Stage 3B
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- July 12, 2016 at 9:55 pm
This was me a year ago. There was no clinical trial option that worked for me for different reasons. My onc suggested Interferon or watch and wait. I am not a fan of watch and wait so I got a 2nd opinion. Once again, the clinical trials were ruled out. Also, Yervoy did not have FDA approval at that time. My Mayo onc suggested Leukine. No where near the side effect of Interferon. They claim it does the same thing as Interferon. What that is, no one really knows, but it was better for me to at least do something other than watch and wait. I am not recommending either, but if you are left with only that choice don't do Interferon. The side effects are not worth it.
Brad – Stage 3B
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- July 13, 2016 at 12:40 pm
Hello Laulamb – I was speaking to my physician at Sloan about hypothetically needing to participate in a clinical trial and was told that Sloan would find me an appropriate trial even if it was at a different center. Personally I do not feel qualified to self navigate through the clinicaltrials.gov site. Maybe you can get more support by obtaining a second opinion.
Best wishes.
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- July 13, 2016 at 12:40 pm
Hello Laulamb – I was speaking to my physician at Sloan about hypothetically needing to participate in a clinical trial and was told that Sloan would find me an appropriate trial even if it was at a different center. Personally I do not feel qualified to self navigate through the clinicaltrials.gov site. Maybe you can get more support by obtaining a second opinion.
Best wishes.
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- July 13, 2016 at 12:40 pm
Hello Laulamb – I was speaking to my physician at Sloan about hypothetically needing to participate in a clinical trial and was told that Sloan would find me an appropriate trial even if it was at a different center. Personally I do not feel qualified to self navigate through the clinicaltrials.gov site. Maybe you can get more support by obtaining a second opinion.
Best wishes.
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- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
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- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
-
- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
-
- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
-
- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
-
- July 13, 2016 at 2:43 pm
I would see another melano a specialist if,possible. Interferon has been shown to not improve survivability and in addition you will feel pretty bad for a year. I saw someone else on this board refer to Kirkwood as Dr. Interferon. When I was originally diagnosed the oncologist I started with wanted to out me on interferon. After some reading I made the choice to get a s CLND opinion and change doctors. As for the clinical trials, I did one as well and traveled from GA to NY 4-5times to participate. See what the protocol,says about frequency of travel, etc.
good luck!
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- July 13, 2016 at 5:09 pm
My husband (deceased since Mar 2016) was a patient of Dr. Kirkwood for his Melanoma for many years. Yes….Dr. Kirkwood really pushed Interpheron…if as a combo in trials there. Husband was miserable for year on the Interpheron in 2008 when he was state 2B.
When he became stage 4 in 2013 he did Interpheron and Ipi combo. Same misery with Interpheron (weekly injection) then so refused to participate in trial and went with Ipi alone.
Krista
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- July 13, 2016 at 5:09 pm
My husband (deceased since Mar 2016) was a patient of Dr. Kirkwood for his Melanoma for many years. Yes….Dr. Kirkwood really pushed Interpheron…if as a combo in trials there. Husband was miserable for year on the Interpheron in 2008 when he was state 2B.
When he became stage 4 in 2013 he did Interpheron and Ipi combo. Same misery with Interpheron (weekly injection) then so refused to participate in trial and went with Ipi alone.
Krista
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- July 13, 2016 at 5:09 pm
My husband (deceased since Mar 2016) was a patient of Dr. Kirkwood for his Melanoma for many years. Yes….Dr. Kirkwood really pushed Interpheron…if as a combo in trials there. Husband was miserable for year on the Interpheron in 2008 when he was state 2B.
When he became stage 4 in 2013 he did Interpheron and Ipi combo. Same misery with Interpheron (weekly injection) then so refused to participate in trial and went with Ipi alone.
Krista
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- July 14, 2016 at 3:22 am
Does your local oncologist office have a Patient Advocate? Hillman Cancer Center certainly should. This is a person that would work with you and your insurance by sending out pre-auth requests, doing appeals with insurance when they deny (and they will) and then lastly working with the drug reps for "donation" of any off-label use drugs.
If you don't qualify for Dr. Kirkwood's clinical trial, then by all means go to clinicaltrials.gov and do some research yourself. Your local oncologist should be doing some research and making suggestions for you as well. Interferon is a very tough road to go down…my husband did this adjuvant for 12 months when he was initially diagnosed stage 3c with no primary in 2008 but that was the only option back then.
Since you already found 2 clinical trials on your own call about them and see what details they can provide you if you haven't already. Maybe your local oncologist can get involved and you would only have a few trips…plus ask about any patient travel assistance. Keep your head up, get your details, make a plan and good luck with your fight !!
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- July 14, 2016 at 3:22 am
Does your local oncologist office have a Patient Advocate? Hillman Cancer Center certainly should. This is a person that would work with you and your insurance by sending out pre-auth requests, doing appeals with insurance when they deny (and they will) and then lastly working with the drug reps for "donation" of any off-label use drugs.
If you don't qualify for Dr. Kirkwood's clinical trial, then by all means go to clinicaltrials.gov and do some research yourself. Your local oncologist should be doing some research and making suggestions for you as well. Interferon is a very tough road to go down…my husband did this adjuvant for 12 months when he was initially diagnosed stage 3c with no primary in 2008 but that was the only option back then.
Since you already found 2 clinical trials on your own call about them and see what details they can provide you if you haven't already. Maybe your local oncologist can get involved and you would only have a few trips…plus ask about any patient travel assistance. Keep your head up, get your details, make a plan and good luck with your fight !!
-
- July 14, 2016 at 3:22 am
Does your local oncologist office have a Patient Advocate? Hillman Cancer Center certainly should. This is a person that would work with you and your insurance by sending out pre-auth requests, doing appeals with insurance when they deny (and they will) and then lastly working with the drug reps for "donation" of any off-label use drugs.
If you don't qualify for Dr. Kirkwood's clinical trial, then by all means go to clinicaltrials.gov and do some research yourself. Your local oncologist should be doing some research and making suggestions for you as well. Interferon is a very tough road to go down…my husband did this adjuvant for 12 months when he was initially diagnosed stage 3c with no primary in 2008 but that was the only option back then.
Since you already found 2 clinical trials on your own call about them and see what details they can provide you if you haven't already. Maybe your local oncologist can get involved and you would only have a few trips…plus ask about any patient travel assistance. Keep your head up, get your details, make a plan and good luck with your fight !!
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- July 14, 2016 at 6:07 pm
These might be worth a look-this is running in PA
and some other possibilities- of the 19 – you can exclude a few easily if your Melanoma was fully ressected.
Best of luck and hope its of some use…
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- July 14, 2016 at 6:36 pm
Hi ,
Was just looking at detailed inclusion criteria- you need to be stage IIIA (N2a)-
so this is probably the trial you are already aware of and excluded from. Thought 3a would have covered it..Sorry…should have checked the small print for you before posting.
This is a link to the Merck program
https://www.merckaccessprogram-keytruda.com/hcc/the-merck-patient-assistance-program/
could be worth giving it a go ?
Cheers,
Deb
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- July 15, 2016 at 1:47 am
Deb, Yes S1404 was the clinical trial I was excluded from because I am N1a.
I have called the clinical trial at Brown Univeristy and the other clinal trial that is currently running in Atlanta, Iowa and Missiouri … On August 6 i will be 3 months from my surgery so I am running out of time to qualify for those. And I live in PA so I do not know how I can commute to RI or GA for treatment.
When I had a PET scan for melanoma, my thyroid lit up and long story short I had papillary thyroid cancer and just had thyroid and lymph nodes removed on 7/5 and may have to do RIA and being on another radioactive treatment disqualifies me from clinical trials also.
I feel like I have no control and my only option is to wait and see what this Melonoma will do to my body.
I made a 2nd opinion appointment with Dr Schucter in Philadelpha to see if she can offer me anything.
This week has been so frustrating for me.
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- July 15, 2016 at 11:39 am
Yes. I can see why you feel so frustrated. I felt much more settled once I had my treatment pathway in place.
I'm in the UK- so my USA geography is rather sketchy. I'm on a Keytruda v placebo trial for stage 3 but had two nodes positive. I was offered treatment at a closer hospital – but chose to travel further in order to be able to access the team with first hand experience of the drug. The trial protocol says travel will be reimbursed but have not yet claimed anything- but of course the travel has other costs- fatigue, time etc besides the purely financial. You might also get this sort of option- assuming you meet all the other criteria. ( but from what you say re the thyroid and timings) this may be difficult to pull off.
Will cross my fingers that Dr Schucter has some options for you- she sounds pretty awesome from what I can see and is clearly an expert in Melanoma which is what we all need. .treatment options are clearly evolving very rapidly in this area. Best wishes and good luck with your decisions. Deb
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- July 15, 2016 at 11:39 am
Yes. I can see why you feel so frustrated. I felt much more settled once I had my treatment pathway in place.
I'm in the UK- so my USA geography is rather sketchy. I'm on a Keytruda v placebo trial for stage 3 but had two nodes positive. I was offered treatment at a closer hospital – but chose to travel further in order to be able to access the team with first hand experience of the drug. The trial protocol says travel will be reimbursed but have not yet claimed anything- but of course the travel has other costs- fatigue, time etc besides the purely financial. You might also get this sort of option- assuming you meet all the other criteria. ( but from what you say re the thyroid and timings) this may be difficult to pull off.
Will cross my fingers that Dr Schucter has some options for you- she sounds pretty awesome from what I can see and is clearly an expert in Melanoma which is what we all need. .treatment options are clearly evolving very rapidly in this area. Best wishes and good luck with your decisions. Deb
-
- July 15, 2016 at 11:39 am
Yes. I can see why you feel so frustrated. I felt much more settled once I had my treatment pathway in place.
I'm in the UK- so my USA geography is rather sketchy. I'm on a Keytruda v placebo trial for stage 3 but had two nodes positive. I was offered treatment at a closer hospital – but chose to travel further in order to be able to access the team with first hand experience of the drug. The trial protocol says travel will be reimbursed but have not yet claimed anything- but of course the travel has other costs- fatigue, time etc besides the purely financial. You might also get this sort of option- assuming you meet all the other criteria. ( but from what you say re the thyroid and timings) this may be difficult to pull off.
Will cross my fingers that Dr Schucter has some options for you- she sounds pretty awesome from what I can see and is clearly an expert in Melanoma which is what we all need. .treatment options are clearly evolving very rapidly in this area. Best wishes and good luck with your decisions. Deb
-
- July 15, 2016 at 1:47 am
Deb, Yes S1404 was the clinical trial I was excluded from because I am N1a.
I have called the clinical trial at Brown Univeristy and the other clinal trial that is currently running in Atlanta, Iowa and Missiouri … On August 6 i will be 3 months from my surgery so I am running out of time to qualify for those. And I live in PA so I do not know how I can commute to RI or GA for treatment.
When I had a PET scan for melanoma, my thyroid lit up and long story short I had papillary thyroid cancer and just had thyroid and lymph nodes removed on 7/5 and may have to do RIA and being on another radioactive treatment disqualifies me from clinical trials also.
I feel like I have no control and my only option is to wait and see what this Melonoma will do to my body.
I made a 2nd opinion appointment with Dr Schucter in Philadelpha to see if she can offer me anything.
This week has been so frustrating for me.
-
- July 15, 2016 at 1:47 am
Deb, Yes S1404 was the clinical trial I was excluded from because I am N1a.
I have called the clinical trial at Brown Univeristy and the other clinal trial that is currently running in Atlanta, Iowa and Missiouri … On August 6 i will be 3 months from my surgery so I am running out of time to qualify for those. And I live in PA so I do not know how I can commute to RI or GA for treatment.
When I had a PET scan for melanoma, my thyroid lit up and long story short I had papillary thyroid cancer and just had thyroid and lymph nodes removed on 7/5 and may have to do RIA and being on another radioactive treatment disqualifies me from clinical trials also.
I feel like I have no control and my only option is to wait and see what this Melonoma will do to my body.
I made a 2nd opinion appointment with Dr Schucter in Philadelpha to see if she can offer me anything.
This week has been so frustrating for me.
-
- July 14, 2016 at 6:36 pm
Hi ,
Was just looking at detailed inclusion criteria- you need to be stage IIIA (N2a)-
so this is probably the trial you are already aware of and excluded from. Thought 3a would have covered it..Sorry…should have checked the small print for you before posting.
This is a link to the Merck program
https://www.merckaccessprogram-keytruda.com/hcc/the-merck-patient-assistance-program/
could be worth giving it a go ?
Cheers,
Deb
-
- July 14, 2016 at 6:36 pm
Hi ,
Was just looking at detailed inclusion criteria- you need to be stage IIIA (N2a)-
so this is probably the trial you are already aware of and excluded from. Thought 3a would have covered it..Sorry…should have checked the small print for you before posting.
This is a link to the Merck program
https://www.merckaccessprogram-keytruda.com/hcc/the-merck-patient-assistance-program/
could be worth giving it a go ?
Cheers,
Deb
-
- July 14, 2016 at 6:07 pm
These might be worth a look-this is running in PA
and some other possibilities- of the 19 – you can exclude a few easily if your Melanoma was fully ressected.
Best of luck and hope its of some use…
-
- July 14, 2016 at 6:07 pm
These might be worth a look-this is running in PA
and some other possibilities- of the 19 – you can exclude a few easily if your Melanoma was fully ressected.
Best of luck and hope its of some use…
-
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