› Forums › General Melanoma Community › Afraid Interferon won’t work.
- This topic has 38 replies, 12 voices, and was last updated 14 years, 5 months ago by
renakimu.
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- June 21, 2011 at 1:13 pm
I was diagnosed in May 2011 stage lll. I had the mapping and Sentinel Lymph Node Biopsy done. The node contained 2 pockets of cells one containing 5 and one containing 15. PET and MRI clear. I see an adjuvant therapy Dr. on the 28th of this month. Interferon (one month only) is what I am told he will be discussing with me. I have been researching interferon and not finding much positive info. I am interested in Ipilimumab. I understand that some doctors are using it for stage lll. I don't think I can handle the wait and watch thing.
I was diagnosed in May 2011 stage lll. I had the mapping and Sentinel Lymph Node Biopsy done. The node contained 2 pockets of cells one containing 5 and one containing 15. PET and MRI clear. I see an adjuvant therapy Dr. on the 28th of this month. Interferon (one month only) is what I am told he will be discussing with me. I have been researching interferon and not finding much positive info. I am interested in Ipilimumab. I understand that some doctors are using it for stage lll. I don't think I can handle the wait and watch thing.
I am also in a surgical study where I was randomized to a group who does not have a complete lymph node dissection and instead I have regular ultrasound tests of my lymph node basin. Thats enough waiting and watching for me!
Any opinions on Ipi?
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- June 21, 2011 at 2:22 pm
I would go back and read prior posts here regarding interferon – everyone has their own opinion. My opinion, is that I would do the interferon. Having been in your boat a year ago, read all the same data, heard all the same stories and opted to do ipi as adjuvant care. Ipi did not work for me – I have always wondered, and probably always will, if the interferon would have. I have read lots of stories right here on this forum where the interferon worked beautifully – once you progress from stage III you will never know because it is only used for stage III, and if you do (hopefully not) progress then you always have ipi as a option for stage IV.
Hugs and Smiles
Dawn
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- June 21, 2011 at 2:22 pm
I would go back and read prior posts here regarding interferon – everyone has their own opinion. My opinion, is that I would do the interferon. Having been in your boat a year ago, read all the same data, heard all the same stories and opted to do ipi as adjuvant care. Ipi did not work for me – I have always wondered, and probably always will, if the interferon would have. I have read lots of stories right here on this forum where the interferon worked beautifully – once you progress from stage III you will never know because it is only used for stage III, and if you do (hopefully not) progress then you always have ipi as a option for stage IV.
Hugs and Smiles
Dawn
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- June 21, 2011 at 2:37 pm
Agree with Dawn – lots of different opinions and they are all good opinions – this is a personal choice.
In my son's case, he did have a small recurrence 5 years after interferon (an in-transit subcutaneous nodule). That was a year ago and he is fine since. We will never know if interferon made a difference – but I feel like it may have at least held it off a few years and look at the advances that have been made in the last year. There is debate about whether it improves overall survival, but if it can hold you off from going to stage IV for a little while, then that in itself is worth it (in my opinion).
Good luck.
Greg – Kyle's dad
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- June 21, 2011 at 2:37 pm
Agree with Dawn – lots of different opinions and they are all good opinions – this is a personal choice.
In my son's case, he did have a small recurrence 5 years after interferon (an in-transit subcutaneous nodule). That was a year ago and he is fine since. We will never know if interferon made a difference – but I feel like it may have at least held it off a few years and look at the advances that have been made in the last year. There is debate about whether it improves overall survival, but if it can hold you off from going to stage IV for a little while, then that in itself is worth it (in my opinion).
Good luck.
Greg – Kyle's dad
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- June 21, 2011 at 3:34 pm
Ipi is only being offered to stage lll if you have measurable disease that is not resectable. There are clinical trials out there but you could get a placebo. I would question your Dr about the 1 month interferon. I thought that recent studies have shown that the one month is not as effective as the full year.
How often do you have the ultrasound tests? That is more then many get. Have they ever discussed radiation in the nodal area?
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- June 21, 2011 at 3:34 pm
Ipi is only being offered to stage lll if you have measurable disease that is not resectable. There are clinical trials out there but you could get a placebo. I would question your Dr about the 1 month interferon. I thought that recent studies have shown that the one month is not as effective as the full year.
How often do you have the ultrasound tests? That is more then many get. Have they ever discussed radiation in the nodal area?
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- June 21, 2011 at 4:02 pm
Ultrasound every 4 months. I plan on discussing the one month interferon because I have also read the studies. I meet with the Dr. for the first time next week and will discuss radiation also. I am trying to get as much information as possible before this appointment. I understand that there is not much out there for me at this point and i want to be armed with all the right questions. This is overwhelming for me.
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- June 21, 2011 at 4:02 pm
Ultrasound every 4 months. I plan on discussing the one month interferon because I have also read the studies. I meet with the Dr. for the first time next week and will discuss radiation also. I am trying to get as much information as possible before this appointment. I understand that there is not much out there for me at this point and i want to be armed with all the right questions. This is overwhelming for me.
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- June 21, 2011 at 4:09 pm
I found a study dated November or December of 2009 regarding radiation after melanoma surgery. I think if you google this you will find it pretty near the top.
It states that ratiation after surgery lessens the chance of recurrence. You have to understand though that after radiation, major surgery will be much more difficult, maybe even impossible should a recurrence happen.
Tough decision but I was impressed enough by the study that I just finished my 29 radiation treatments in hopes of preventing another local recurrence.
Wishing you well,
Nicki, Stage 3b
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- June 21, 2011 at 4:09 pm
I found a study dated November or December of 2009 regarding radiation after melanoma surgery. I think if you google this you will find it pretty near the top.
It states that ratiation after surgery lessens the chance of recurrence. You have to understand though that after radiation, major surgery will be much more difficult, maybe even impossible should a recurrence happen.
Tough decision but I was impressed enough by the study that I just finished my 29 radiation treatments in hopes of preventing another local recurrence.
Wishing you well,
Nicki, Stage 3b
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- June 21, 2011 at 4:14 pm
As per your signature, you are a FIGHTER. A scared fighter, but still, a fighter.
Take a deep breath. Consider NOT researching everything for a day or two. You are very recently diagnosed, and it is simply overwhelming.
Information is great, but you can get overloaded, too. You have every right to thoroughly discuss treatment options with your doctors. If you don't already, may I suggest a "cancer book"? I have a big college 5 pocket spiral. As I think of questions, I jot them down for the next appointment. Articles, suggestions, all go in the pocket to also review.
I do also try to take someone (husband, friend, kids) with me. It's amazing, even writing down responses, how much I can't remember after each appointment! But a second set of less upset ears, even though they care very much, is very helpful in reviewing after your appointment.
Make sure you are absolutely comfortable with your treatment team. You are paying them, it's your life, and you have the right to be able to challenge or question them without feeling belittled or ignored. Prayerfully, your doctor is already your best advocate.
As a bail bondsman, you are obviously a strong person. We will help you on this board, there are absolutely phenomenal folks on here. Give yourself time to adjust to your new reality. Not a fun reality, but it's yours now.
And in the end, YOU will decide what is best for you. Each of us has to decide/advocate for ourselves (or loved one). And that's ok. We are all on our own journey, but we sure have a lot of very kind, loving, supportive people here to vent to, and bounce fears/thoughts/ideas off of.
It will be ok. I will tell you, I really appreciate the small things now much more. Every day is a gift that I try to enjoy.
TracyLee
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- June 21, 2011 at 4:14 pm
As per your signature, you are a FIGHTER. A scared fighter, but still, a fighter.
Take a deep breath. Consider NOT researching everything for a day or two. You are very recently diagnosed, and it is simply overwhelming.
Information is great, but you can get overloaded, too. You have every right to thoroughly discuss treatment options with your doctors. If you don't already, may I suggest a "cancer book"? I have a big college 5 pocket spiral. As I think of questions, I jot them down for the next appointment. Articles, suggestions, all go in the pocket to also review.
I do also try to take someone (husband, friend, kids) with me. It's amazing, even writing down responses, how much I can't remember after each appointment! But a second set of less upset ears, even though they care very much, is very helpful in reviewing after your appointment.
Make sure you are absolutely comfortable with your treatment team. You are paying them, it's your life, and you have the right to be able to challenge or question them without feeling belittled or ignored. Prayerfully, your doctor is already your best advocate.
As a bail bondsman, you are obviously a strong person. We will help you on this board, there are absolutely phenomenal folks on here. Give yourself time to adjust to your new reality. Not a fun reality, but it's yours now.
And in the end, YOU will decide what is best for you. Each of us has to decide/advocate for ourselves (or loved one). And that's ok. We are all on our own journey, but we sure have a lot of very kind, loving, supportive people here to vent to, and bounce fears/thoughts/ideas off of.
It will be ok. I will tell you, I really appreciate the small things now much more. Every day is a gift that I try to enjoy.
TracyLee
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- June 21, 2011 at 6:01 pm
Hi Suzgolden,
I've had two major surgeries to remove a primary tumor and 10 months later a local reocurrence.I am currently doing 25 radiation treatments and considering further adjuvant therapies including clinical trials;I have decided against Interferon.
It is a very toxic treatment with long lasting side effects that persist long after discontinuing it, some say- sometimes years.It does not improve the overall survival rate/OS/ but only delays reocurrence with 13% average in 5-9% of the patients.
It should NEVER be done by people with history of depression/mental disorders as it affects the central nervous system and can induce severe psychiatric disorders.
It is an outdated drug that is still being prescribed by some doctors because there is a push for profit by the big Pharma and because till recently it was the only available drug approved for stage 3 by the FDA .Top leading melanoma clinics stopped prescribing Interferon 10 years ago due to its toxicity and minimum proven effectiveness.
I would advise you against destroying your immune system further and opting out of Interferon.But then that is just my opinion.Follow your instincts-it is the best strategy.
Best regards,
Teodora
stage 3
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- June 21, 2011 at 6:01 pm
Hi Suzgolden,
I've had two major surgeries to remove a primary tumor and 10 months later a local reocurrence.I am currently doing 25 radiation treatments and considering further adjuvant therapies including clinical trials;I have decided against Interferon.
It is a very toxic treatment with long lasting side effects that persist long after discontinuing it, some say- sometimes years.It does not improve the overall survival rate/OS/ but only delays reocurrence with 13% average in 5-9% of the patients.
It should NEVER be done by people with history of depression/mental disorders as it affects the central nervous system and can induce severe psychiatric disorders.
It is an outdated drug that is still being prescribed by some doctors because there is a push for profit by the big Pharma and because till recently it was the only available drug approved for stage 3 by the FDA .Top leading melanoma clinics stopped prescribing Interferon 10 years ago due to its toxicity and minimum proven effectiveness.
I would advise you against destroying your immune system further and opting out of Interferon.But then that is just my opinion.Follow your instincts-it is the best strategy.
Best regards,
Teodora
stage 3
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- June 21, 2011 at 6:08 pm
Teodora,
I agree totally with you. Only difference is, I am a wuss who doesn't want to "bad mouth" a treatment. Cuz I am a wuss.
I tried Interferon 2 days and had a psychotic experience. I think it should be pulled off the market. Old, ineffective and dangerous.
Nicki, Stage 3b
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- June 21, 2011 at 6:08 pm
Teodora,
I agree totally with you. Only difference is, I am a wuss who doesn't want to "bad mouth" a treatment. Cuz I am a wuss.
I tried Interferon 2 days and had a psychotic experience. I think it should be pulled off the market. Old, ineffective and dangerous.
Nicki, Stage 3b
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- June 21, 2011 at 6:42 pm
everything works about 10% of time in patients…until we pinpoint the dartboards…guessing is the course we follow……as for stage three'ers i share your frustation…neo adjuvant and adjuvant therapies need to get a lot more progressive…as it stands the darts available to us is
watch and wait
interferon
a few clinical trials that are randomized
biochemotherapy
what we need is for doctors to target and combined safer treatments…i see no fracking reason why i am not allowed yervoy or venif(whatever) and combo treatments coupling chemo with immuno…v is so much safer to take than interleukin or interferon…ipi is dicey i admit…very harsh…but the future is adjuvant and combo and targeted…with stage 4 meds
i know my onc is totally frustrated with this….she would LOVE to put me on good immuno targeedt for me and chemo drug combo…as it stands, if i go 4 then we look at clinical trials…part of this prob is fda and big pharma…big pharma OWNs sloan, MD anderson and the other 'top notch' mel centers…i am glad i go to teaching hospital where they don'/t treat you like some guinea pig just so they can get their gold stars…NIH sucks in lots of ways…but where else do you go when desperate?
boots
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- June 21, 2011 at 6:42 pm
everything works about 10% of time in patients…until we pinpoint the dartboards…guessing is the course we follow……as for stage three'ers i share your frustation…neo adjuvant and adjuvant therapies need to get a lot more progressive…as it stands the darts available to us is
watch and wait
interferon
a few clinical trials that are randomized
biochemotherapy
what we need is for doctors to target and combined safer treatments…i see no fracking reason why i am not allowed yervoy or venif(whatever) and combo treatments coupling chemo with immuno…v is so much safer to take than interleukin or interferon…ipi is dicey i admit…very harsh…but the future is adjuvant and combo and targeted…with stage 4 meds
i know my onc is totally frustrated with this….she would LOVE to put me on good immuno targeedt for me and chemo drug combo…as it stands, if i go 4 then we look at clinical trials…part of this prob is fda and big pharma…big pharma OWNs sloan, MD anderson and the other 'top notch' mel centers…i am glad i go to teaching hospital where they don'/t treat you like some guinea pig just so they can get their gold stars…NIH sucks in lots of ways…but where else do you go when desperate?
boots
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- June 21, 2011 at 6:49 pm
i forgot to add that if you mel is accessable then surgery (with certain restrictions) is your first line of defense…radiation is also a course for threes…always remember radiation oncs want to nuke, medical oncs want to drug and surgical oncs want to cut…and you should have all three at some point during treatments along with a lymphodema specialist, social worker and shrink…you control the ship…and you do that by getting as informed as you can and get others on your a team reading and looking (constantly )…and you also do that by keeping your body and mind as healthy as you can get it…let go of all the crap foods, booze, smokes and exercise, sleep, meditate…keep a routine…keep your immune system up because all mel treatments are HARD…and through it all you got to stand in on the side of …life…you have to chose LIFE even when you feel so bad dying doesn't seem like a bad idea…
boots
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- June 21, 2011 at 6:49 pm
i forgot to add that if you mel is accessable then surgery (with certain restrictions) is your first line of defense…radiation is also a course for threes…always remember radiation oncs want to nuke, medical oncs want to drug and surgical oncs want to cut…and you should have all three at some point during treatments along with a lymphodema specialist, social worker and shrink…you control the ship…and you do that by getting as informed as you can and get others on your a team reading and looking (constantly )…and you also do that by keeping your body and mind as healthy as you can get it…let go of all the crap foods, booze, smokes and exercise, sleep, meditate…keep a routine…keep your immune system up because all mel treatments are HARD…and through it all you got to stand in on the side of …life…you have to chose LIFE even when you feel so bad dying doesn't seem like a bad idea…
boots
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- June 21, 2011 at 6:54 pm
i read your profile, bail bondsman? you are tough enough for this fight…bail bondsman meet a stage-hand
boots
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- June 21, 2011 at 6:54 pm
i read your profile, bail bondsman? you are tough enough for this fight…bail bondsman meet a stage-hand
boots
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- June 21, 2011 at 7:03 pm
It is not just stage 3 that needs adjunct therapy. I am stage 4 with 6 recurrances. Currently NED and start radiation next week because they could not get margins since the tumor was sitting on a nerve. There are no others for me right now. Even some of the stage 3 trials that have a placebo are not for stage 4 NED!
As far as NIH it is known that they are there for research. If you are hla 0201positve then they have some good choices. The main issue is if the trial does not give results for a particular person you are quickly off scurring by yourself.
Been told that my cancer center is going to have a trial for stage 3 and 4 NED in September. Hopefully will be eligible and no recurrances before then! They said they would talk to me after my next scan in August.
Linda
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- June 21, 2011 at 7:03 pm
It is not just stage 3 that needs adjunct therapy. I am stage 4 with 6 recurrances. Currently NED and start radiation next week because they could not get margins since the tumor was sitting on a nerve. There are no others for me right now. Even some of the stage 3 trials that have a placebo are not for stage 4 NED!
As far as NIH it is known that they are there for research. If you are hla 0201positve then they have some good choices. The main issue is if the trial does not give results for a particular person you are quickly off scurring by yourself.
Been told that my cancer center is going to have a trial for stage 3 and 4 NED in September. Hopefully will be eligible and no recurrances before then! They said they would talk to me after my next scan in August.
Linda
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- June 21, 2011 at 6:57 pm
Everyone will have a strong opinion based on their own personal experiences. No one can know for sure whether interferon will help you or not. No guarantees in the world of melanoma treatment. You have to weigh all the issues with each treatment and decide for yourself, knowing your own body and mind.
So our experience, is my husband finished one year of interferon in May and did great, no lasting side effects. He worked thru the whole year and was tired and lost some weight,but other than that much easier than we ever thought. He has already gained back ten pounds in the past month and is looking and feeling good. He has mucosal melanoma, so very rare and aggressive, and for us we needed to do some form of treatment. We will never regret our year of interferon, as he is currently NED. We never felt we were offered interferon to make a drug company rich, our doctor didn’t push us one way or another. After reading all the studies, we were willing to take a chance at delaying reoccurrence, to give us time for other viable options. Go with your gut, and feel comfortable about your decision. God luck! Valerie (phil’s wife) -
- June 21, 2011 at 6:57 pm
Everyone will have a strong opinion based on their own personal experiences. No one can know for sure whether interferon will help you or not. No guarantees in the world of melanoma treatment. You have to weigh all the issues with each treatment and decide for yourself, knowing your own body and mind.
So our experience, is my husband finished one year of interferon in May and did great, no lasting side effects. He worked thru the whole year and was tired and lost some weight,but other than that much easier than we ever thought. He has already gained back ten pounds in the past month and is looking and feeling good. He has mucosal melanoma, so very rare and aggressive, and for us we needed to do some form of treatment. We will never regret our year of interferon, as he is currently NED. We never felt we were offered interferon to make a drug company rich, our doctor didn’t push us one way or another. After reading all the studies, we were willing to take a chance at delaying reoccurrence, to give us time for other viable options. Go with your gut, and feel comfortable about your decision. God luck! Valerie (phil’s wife) -
- June 21, 2011 at 8:59 pm
As others have mentioned – you aren't eligible at Stage 3a for Ipi/Yervoy. it is only for Stage 3 unresectable. You are also not going to be eligible for most other adjuvant trials because you didn't have have an LND. Most of these adjuvant trials require you to start within 8-12 weeks after surgery.
You MIGHT be able to do GMCSF if you can get insurance to cover it and you find a doc who is willing to give it to you.
Some of the studies say that interferon works best for those with microscopic cells like you. Google micrometastasis and interferon…here are the results of the most recent studies:
My husband decided against interferon 2 years ago (he is NED with observation). Our docs didn't push it and I refuse to tell people not to do interferon – because YOU must do what YOU are comfortable with.
All my best
Emily
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- June 21, 2011 at 8:59 pm
As others have mentioned – you aren't eligible at Stage 3a for Ipi/Yervoy. it is only for Stage 3 unresectable. You are also not going to be eligible for most other adjuvant trials because you didn't have have an LND. Most of these adjuvant trials require you to start within 8-12 weeks after surgery.
You MIGHT be able to do GMCSF if you can get insurance to cover it and you find a doc who is willing to give it to you.
Some of the studies say that interferon works best for those with microscopic cells like you. Google micrometastasis and interferon…here are the results of the most recent studies:
My husband decided against interferon 2 years ago (he is NED with observation). Our docs didn't push it and I refuse to tell people not to do interferon – because YOU must do what YOU are comfortable with.
All my best
Emily
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- June 21, 2011 at 9:03 pm
The link I sent above was old – if you look back at my other post here you will see the latest studies on interferon presented at ASCO:
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- June 21, 2011 at 9:03 pm
The link I sent above was old – if you look back at my other post here you will see the latest studies on interferon presented at ASCO:
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- June 22, 2011 at 12:54 am
My husband's experience with Interferon has been similar to Valerie's husband. He is 5 months in and working every day (in Alaska fishing right now :). He doesn't feel great but says that it is tolerable for a year. He has lost 35 lbs and has many vague side effects but not the ones mentioned in the more negative responses. PET scan last week was good.
I don't love the idea of Interferon but his only other choice was watch and wait (second opinions at Univ of Washington and chart review at MD Anderson…. he didn't qualify for the MAGE3 vaccine or Ipi trial) I'm a nurse and needed to feel like we were doing something. Unfortunately, there will never be a way to know if Interferon helped so your decision has to be based on your comfort level. For us it came down to one question "If there's a recurrence will we have any regrets?" We agreed with watch and wait, we would ask… what if??
Its true that some of the big research hospitals don't offer Interferon anymore but patients who opt for Interferon don't do clinical trials… so…
I hope you can come to a decision that feels right. I so wanted an oncologist to say… here's your diagnosis and here's what we're gonna do. Doesn't happen with melanoma!
Its up to you to decide.
Good Luck, Kelly
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- June 22, 2011 at 12:54 am
My husband's experience with Interferon has been similar to Valerie's husband. He is 5 months in and working every day (in Alaska fishing right now :). He doesn't feel great but says that it is tolerable for a year. He has lost 35 lbs and has many vague side effects but not the ones mentioned in the more negative responses. PET scan last week was good.
I don't love the idea of Interferon but his only other choice was watch and wait (second opinions at Univ of Washington and chart review at MD Anderson…. he didn't qualify for the MAGE3 vaccine or Ipi trial) I'm a nurse and needed to feel like we were doing something. Unfortunately, there will never be a way to know if Interferon helped so your decision has to be based on your comfort level. For us it came down to one question "If there's a recurrence will we have any regrets?" We agreed with watch and wait, we would ask… what if??
Its true that some of the big research hospitals don't offer Interferon anymore but patients who opt for Interferon don't do clinical trials… so…
I hope you can come to a decision that feels right. I so wanted an oncologist to say… here's your diagnosis and here's what we're gonna do. Doesn't happen with melanoma!
Its up to you to decide.
Good Luck, Kelly
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- June 22, 2011 at 1:39 pm
my mum is diagnosed with stage iiib melanoma and she is at the same situation with you.the only thing that i can say is that you have to do what is making you happy and smily you wont get an answer in the internet tha onlu you can do is to think alone.the only thing that make me worry about interferon is that you if have many side effects the doctor reduse the doce until you can afford it.is there any result with that?because if you dont take the dose that you have to take you wont have the resaults you want on my opinion.can anyone tell asabout that?
i hope tha you will find your answer and you are going to get out of the case "melanoma"
good luch whatever you decide
rena
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- June 22, 2011 at 1:39 pm
my mum is diagnosed with stage iiib melanoma and she is at the same situation with you.the only thing that i can say is that you have to do what is making you happy and smily you wont get an answer in the internet tha onlu you can do is to think alone.the only thing that make me worry about interferon is that you if have many side effects the doctor reduse the doce until you can afford it.is there any result with that?because if you dont take the dose that you have to take you wont have the resaults you want on my opinion.can anyone tell asabout that?
i hope tha you will find your answer and you are going to get out of the case "melanoma"
good luch whatever you decide
rena
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