› Forums › General Melanoma Community › Looking for advice
- This topic has 51 replies, 13 voices, and was last updated 7 years, 10 months ago by
Happy_girl.
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- June 9, 2016 at 3:04 pm
Hello! I have been diagnosed with stage 3 melanoma with 3 of 28 lymph nodes positive and a negative PET scan. I had the first visit with my oncologist today and I will be getting Interfuron starting on June 20th. I am very nervous. I am 32 and a mother to a 2 yr old, a teacher and a wife. I have tremendous family and friend support which is an unbelievable blessing. I'm look for advice on how to get through the treatment. I told my doctor that I need to get back to normal life ASAP. I'm very active and went back to as normal as I could even after both surgeries and I believe that was key to my very quick recovery. I'm very nervous and scared. Thankfully I am on summer vacation until Aug 10th so I will have my 4 weeks of infusion and 3 weeks of shots in before I go back to school. Any and all advice is appreciated!! I need some positive vibes going into this. My dr told me attitude is everything so as long as I keep a positive attitude, I'll so fine. Thank you!
Christy 🙂
- Replies
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- June 9, 2016 at 3:30 pm
Hi Christy,welcome to the forum!!! I have a couple of questions if you don't mind? First one is where are you being treated and is your Oncologist a Melanoma specialist? Interferon has kind of become a thing of the past for most Oncologist due to the very low response rates and high side effect profile. If you go back a few days and look at the post from Tim of MRF from this years ASCO in Chicago he talks about Interferon. The standard of care for most stage 3 patients is watch and wait unless the risk factors suggest a high likely hood of relapse and if that is the case Ipi is now available or clinical trials of Pd-1 drugs are also being offered. I am in no way an expert so I will send you a video link which features Dr. Jason Luke from Chicago University. http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1mJC86cHIV Wishing you the best!!!Ed
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- June 9, 2016 at 4:07 pm
Hello! I am being treated in Wheeling, WV about an hr from Pittsburgh, PA. After my I received the positive pathology report from my first surgery, my doctor sent me to UPMC in Pitts, PA to see Dr John Kirkwood who is the best melanoma dr in the country. He suggested either Interfuron or to enroll in a clinical trial they offered. I went for a follow up after my auxiliary node dissection and he still felt the same way. I signed up for the trial which would have randomized me to either Intefuron or Keytruda. Turns out, my insurance would not approve receiving the trial in Pitt but suggested other hospitals that take part in the trial (this did not include our local hospital). To be honest, I am exhausted with everything and just want treatment started while I am on summer vacation from school. I will still be consulting Dr Kirkwood throughout the treatment and am keeping my positive attitude AND getting back to normal life ASAP. I went in for my first skin check and photo finder since my initial diagnosis and they didn't find anything. I was told that I could choose not to have treatment but I have a 2 yr old and do not want to take any risks. Thank you very much for the response and suggestions! It is so very much appreciated!!!!
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- June 9, 2016 at 4:07 pm
Hello! I am being treated in Wheeling, WV about an hr from Pittsburgh, PA. After my I received the positive pathology report from my first surgery, my doctor sent me to UPMC in Pitts, PA to see Dr John Kirkwood who is the best melanoma dr in the country. He suggested either Interfuron or to enroll in a clinical trial they offered. I went for a follow up after my auxiliary node dissection and he still felt the same way. I signed up for the trial which would have randomized me to either Intefuron or Keytruda. Turns out, my insurance would not approve receiving the trial in Pitt but suggested other hospitals that take part in the trial (this did not include our local hospital). To be honest, I am exhausted with everything and just want treatment started while I am on summer vacation from school. I will still be consulting Dr Kirkwood throughout the treatment and am keeping my positive attitude AND getting back to normal life ASAP. I went in for my first skin check and photo finder since my initial diagnosis and they didn't find anything. I was told that I could choose not to have treatment but I have a 2 yr old and do not want to take any risks. Thank you very much for the response and suggestions! It is so very much appreciated!!!!
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- June 9, 2016 at 4:19 pm
Dr. Kirkwood is Dr. Interferon. That's his baby. Other doctors don't promote it as much as he will. I'm just going to include a link that gives you a balanced approach to deciding if interferon is a good choice for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Good luck!
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- June 9, 2016 at 4:19 pm
Dr. Kirkwood is Dr. Interferon. That's his baby. Other doctors don't promote it as much as he will. I'm just going to include a link that gives you a balanced approach to deciding if interferon is a good choice for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Good luck!
-
- June 9, 2016 at 4:19 pm
Dr. Kirkwood is Dr. Interferon. That's his baby. Other doctors don't promote it as much as he will. I'm just going to include a link that gives you a balanced approach to deciding if interferon is a good choice for you.
http://theoncologist.alphamedpress.org/content/10/9/739.full
Good luck!
-
- June 9, 2016 at 9:09 pm
Hi Christy,
I did interferon 5 years ago with an 11 month old at home. It wasn't an easy task but it sounds like you've made your decision and I can respect the thought process. I had lots of family help and quite honestly with a two year old I think it will be necessary for you as well.
I chose to have my treatments first thing in the morning so I could come home and have some time with my son before we both napped. Some days I was also able to spend some time in the afternoon with him but the four week phase was brutal. My parents lived with me for the 4 weeks and I'm not sure how we would have done it without them. My dad drove me to and from and my mom was taking care of my son full time.
keep in mind that everyone tolerates it differently. I was also very young (29 at the time), and in good shape but that didn't seem to help. Drink a lot of water and take Tylenol before you need it and lots of it. Don't be afraid to take the Tylenol (I know I didn't like taking meds). I would also consider taking anti-depressants prophylactically. I wish I would have and didn't.
The shots phase is slightly better but still hard. I took the shots at night and was able to manage my son on my own. I quit at 4 months in bc I just was done with being sick.
I think you've been given good advice from others. I don't know what my decision would have been if I were diagnosed today. It took me 5 years to become stage IV. Maybe the interferon helped even a little, maybe it didn't help at all, but I'm so grateful for the new drugs that have been approved in the past 5 years. I'm currently taking keytruda and it's not even comparable to interferon.
let me know if you have any questions and good luck
caitlin
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- June 9, 2016 at 9:09 pm
Hi Christy,
I did interferon 5 years ago with an 11 month old at home. It wasn't an easy task but it sounds like you've made your decision and I can respect the thought process. I had lots of family help and quite honestly with a two year old I think it will be necessary for you as well.
I chose to have my treatments first thing in the morning so I could come home and have some time with my son before we both napped. Some days I was also able to spend some time in the afternoon with him but the four week phase was brutal. My parents lived with me for the 4 weeks and I'm not sure how we would have done it without them. My dad drove me to and from and my mom was taking care of my son full time.
keep in mind that everyone tolerates it differently. I was also very young (29 at the time), and in good shape but that didn't seem to help. Drink a lot of water and take Tylenol before you need it and lots of it. Don't be afraid to take the Tylenol (I know I didn't like taking meds). I would also consider taking anti-depressants prophylactically. I wish I would have and didn't.
The shots phase is slightly better but still hard. I took the shots at night and was able to manage my son on my own. I quit at 4 months in bc I just was done with being sick.
I think you've been given good advice from others. I don't know what my decision would have been if I were diagnosed today. It took me 5 years to become stage IV. Maybe the interferon helped even a little, maybe it didn't help at all, but I'm so grateful for the new drugs that have been approved in the past 5 years. I'm currently taking keytruda and it's not even comparable to interferon.
let me know if you have any questions and good luck
caitlin
-
- June 9, 2016 at 9:09 pm
Hi Christy,
I did interferon 5 years ago with an 11 month old at home. It wasn't an easy task but it sounds like you've made your decision and I can respect the thought process. I had lots of family help and quite honestly with a two year old I think it will be necessary for you as well.
I chose to have my treatments first thing in the morning so I could come home and have some time with my son before we both napped. Some days I was also able to spend some time in the afternoon with him but the four week phase was brutal. My parents lived with me for the 4 weeks and I'm not sure how we would have done it without them. My dad drove me to and from and my mom was taking care of my son full time.
keep in mind that everyone tolerates it differently. I was also very young (29 at the time), and in good shape but that didn't seem to help. Drink a lot of water and take Tylenol before you need it and lots of it. Don't be afraid to take the Tylenol (I know I didn't like taking meds). I would also consider taking anti-depressants prophylactically. I wish I would have and didn't.
The shots phase is slightly better but still hard. I took the shots at night and was able to manage my son on my own. I quit at 4 months in bc I just was done with being sick.
I think you've been given good advice from others. I don't know what my decision would have been if I were diagnosed today. It took me 5 years to become stage IV. Maybe the interferon helped even a little, maybe it didn't help at all, but I'm so grateful for the new drugs that have been approved in the past 5 years. I'm currently taking keytruda and it's not even comparable to interferon.
let me know if you have any questions and good luck
caitlin
-
- June 9, 2016 at 4:07 pm
Hello! I am being treated in Wheeling, WV about an hr from Pittsburgh, PA. After my I received the positive pathology report from my first surgery, my doctor sent me to UPMC in Pitts, PA to see Dr John Kirkwood who is the best melanoma dr in the country. He suggested either Interfuron or to enroll in a clinical trial they offered. I went for a follow up after my auxiliary node dissection and he still felt the same way. I signed up for the trial which would have randomized me to either Intefuron or Keytruda. Turns out, my insurance would not approve receiving the trial in Pitt but suggested other hospitals that take part in the trial (this did not include our local hospital). To be honest, I am exhausted with everything and just want treatment started while I am on summer vacation from school. I will still be consulting Dr Kirkwood throughout the treatment and am keeping my positive attitude AND getting back to normal life ASAP. I went in for my first skin check and photo finder since my initial diagnosis and they didn't find anything. I was told that I could choose not to have treatment but I have a 2 yr old and do not want to take any risks. Thank you very much for the response and suggestions! It is so very much appreciated!!!!
-
- June 9, 2016 at 3:30 pm
Hi Christy,welcome to the forum!!! I have a couple of questions if you don't mind? First one is where are you being treated and is your Oncologist a Melanoma specialist? Interferon has kind of become a thing of the past for most Oncologist due to the very low response rates and high side effect profile. If you go back a few days and look at the post from Tim of MRF from this years ASCO in Chicago he talks about Interferon. The standard of care for most stage 3 patients is watch and wait unless the risk factors suggest a high likely hood of relapse and if that is the case Ipi is now available or clinical trials of Pd-1 drugs are also being offered. I am in no way an expert so I will send you a video link which features Dr. Jason Luke from Chicago University. http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1mJC86cHIV Wishing you the best!!!Ed
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- June 9, 2016 at 3:30 pm
Hi Christy,welcome to the forum!!! I have a couple of questions if you don't mind? First one is where are you being treated and is your Oncologist a Melanoma specialist? Interferon has kind of become a thing of the past for most Oncologist due to the very low response rates and high side effect profile. If you go back a few days and look at the post from Tim of MRF from this years ASCO in Chicago he talks about Interferon. The standard of care for most stage 3 patients is watch and wait unless the risk factors suggest a high likely hood of relapse and if that is the case Ipi is now available or clinical trials of Pd-1 drugs are also being offered. I am in no way an expert so I will send you a video link which features Dr. Jason Luke from Chicago University. http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1mJC86cHIV Wishing you the best!!!Ed
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- June 9, 2016 at 4:02 pm
I agree that you should look into clinical trials. When I was diagnosed stage 3 last year, I didn't qualify for the clinical trial option that was best for me. There was a 2nd trial that had a placebo group and I didn't care for that option either. The thought of getting the placebo was not for me. Once clinical trials were ruled out for me, the topic of Interferon vs. Leukine was brought up. Based on all the research I did last June, Leukine was a way better option over Interferon. The Leukine injections were not my 1st choice, but I felt the were better than watch and wait. Just my two cents worth. I wish you all the best going forward.
Brad
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- June 9, 2016 at 4:11 pm
Thank you! I enrolled in a clinical trial that would randomize me to either Interfuron or Keytruda. My insurance would not cover the trail at the hospital I was going to so my next choice was Intefuron at my local hospital which I am ok with. I was diagnosed on 3/24/16 and want to get this started ASAP! Watch and wait is not for me either. I have a two year old that I'm doing all of this for! I did go for my first skin check and photo finder since my diagnosis and they didn't see anything! Thank you so much for the response and advice! It is very much appreciated!
Christy
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- June 9, 2016 at 4:11 pm
Thank you! I enrolled in a clinical trial that would randomize me to either Interfuron or Keytruda. My insurance would not cover the trail at the hospital I was going to so my next choice was Intefuron at my local hospital which I am ok with. I was diagnosed on 3/24/16 and want to get this started ASAP! Watch and wait is not for me either. I have a two year old that I'm doing all of this for! I did go for my first skin check and photo finder since my diagnosis and they didn't see anything! Thank you so much for the response and advice! It is very much appreciated!
Christy
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- June 9, 2016 at 5:44 pm
Hey Christy-sorry about your diagnosis. I am a stage 3b guy and went to mayo Rochester for my treatment back in 2013. I chose watch and wait. The oncologist-dr mcwilliams offered interferon but explained that statically speaking it would have no effect and at most add a year to my life. He added that while on it I would feel like I had the severe flu for a year-so add a year to life but be sick for a year. I declined based on his advice-I had a 2year old at the time and one on the way so I know what your are feeling. There have been some major gains in treatment recently-check them out-you have a baby to take care of-don't be afraid to get a second opinion. I'm originally from Columbus, Ohio and would drive to wheeling quite a bit for a girlfriend and it isn't a bad drive at all. Maybe give the melanoma center there a shot. The other thing to consider is although former president Jimmy Carter was a stage ahead of us-he didn't take interferon-he took the other fda approved drug. In the end it's your decision and I wish you the best. These people on this forum have been through the ringer with melanoma and can definitely offer some good advice. Bottom line for me-there is no way I would go back to a dr that advocates for interferon. Do your own research and check out the stats on interferon vs other treatments. You are at the crossroads of your life and need to own this decision and not be told what you are going to do with your body by someone in a white coat.
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- June 9, 2016 at 5:44 pm
Hey Christy-sorry about your diagnosis. I am a stage 3b guy and went to mayo Rochester for my treatment back in 2013. I chose watch and wait. The oncologist-dr mcwilliams offered interferon but explained that statically speaking it would have no effect and at most add a year to my life. He added that while on it I would feel like I had the severe flu for a year-so add a year to life but be sick for a year. I declined based on his advice-I had a 2year old at the time and one on the way so I know what your are feeling. There have been some major gains in treatment recently-check them out-you have a baby to take care of-don't be afraid to get a second opinion. I'm originally from Columbus, Ohio and would drive to wheeling quite a bit for a girlfriend and it isn't a bad drive at all. Maybe give the melanoma center there a shot. The other thing to consider is although former president Jimmy Carter was a stage ahead of us-he didn't take interferon-he took the other fda approved drug. In the end it's your decision and I wish you the best. These people on this forum have been through the ringer with melanoma and can definitely offer some good advice. Bottom line for me-there is no way I would go back to a dr that advocates for interferon. Do your own research and check out the stats on interferon vs other treatments. You are at the crossroads of your life and need to own this decision and not be told what you are going to do with your body by someone in a white coat.
-
- June 9, 2016 at 5:44 pm
Hey Christy-sorry about your diagnosis. I am a stage 3b guy and went to mayo Rochester for my treatment back in 2013. I chose watch and wait. The oncologist-dr mcwilliams offered interferon but explained that statically speaking it would have no effect and at most add a year to my life. He added that while on it I would feel like I had the severe flu for a year-so add a year to life but be sick for a year. I declined based on his advice-I had a 2year old at the time and one on the way so I know what your are feeling. There have been some major gains in treatment recently-check them out-you have a baby to take care of-don't be afraid to get a second opinion. I'm originally from Columbus, Ohio and would drive to wheeling quite a bit for a girlfriend and it isn't a bad drive at all. Maybe give the melanoma center there a shot. The other thing to consider is although former president Jimmy Carter was a stage ahead of us-he didn't take interferon-he took the other fda approved drug. In the end it's your decision and I wish you the best. These people on this forum have been through the ringer with melanoma and can definitely offer some good advice. Bottom line for me-there is no way I would go back to a dr that advocates for interferon. Do your own research and check out the stats on interferon vs other treatments. You are at the crossroads of your life and need to own this decision and not be told what you are going to do with your body by someone in a white coat.
-
- June 9, 2016 at 4:11 pm
Thank you! I enrolled in a clinical trial that would randomize me to either Interfuron or Keytruda. My insurance would not cover the trail at the hospital I was going to so my next choice was Intefuron at my local hospital which I am ok with. I was diagnosed on 3/24/16 and want to get this started ASAP! Watch and wait is not for me either. I have a two year old that I'm doing all of this for! I did go for my first skin check and photo finder since my diagnosis and they didn't see anything! Thank you so much for the response and advice! It is very much appreciated!
Christy
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- June 9, 2016 at 4:02 pm
I agree that you should look into clinical trials. When I was diagnosed stage 3 last year, I didn't qualify for the clinical trial option that was best for me. There was a 2nd trial that had a placebo group and I didn't care for that option either. The thought of getting the placebo was not for me. Once clinical trials were ruled out for me, the topic of Interferon vs. Leukine was brought up. Based on all the research I did last June, Leukine was a way better option over Interferon. The Leukine injections were not my 1st choice, but I felt the were better than watch and wait. Just my two cents worth. I wish you all the best going forward.
Brad
-
- June 9, 2016 at 4:02 pm
I agree that you should look into clinical trials. When I was diagnosed stage 3 last year, I didn't qualify for the clinical trial option that was best for me. There was a 2nd trial that had a placebo group and I didn't care for that option either. The thought of getting the placebo was not for me. Once clinical trials were ruled out for me, the topic of Interferon vs. Leukine was brought up. Based on all the research I did last June, Leukine was a way better option over Interferon. The Leukine injections were not my 1st choice, but I felt the were better than watch and wait. Just my two cents worth. I wish you all the best going forward.
Brad
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- June 9, 2016 at 6:20 pm
Hi Christy,
i was diagnosed with 3a disease 5 years ago and at the time of diagnosis was ready to start interferon per the advice of my oncologist at Emory. After reading and speaking with my family and friends in the healthcare field, I decided to get a second opinion. I wouldn't up at Memorial in NY who no longer use interferon as the standard of care for melanoma – for that matter I believe the same holds true at MD Anderson. Although many opt for interferon, the data suggests minimal benefit and to some a high level of discomfort. Read up, be your own advocate and make the choice you feel is best. If that happens to be interferon, then move forward!
Good luck!
-
- June 9, 2016 at 6:20 pm
Hi Christy,
i was diagnosed with 3a disease 5 years ago and at the time of diagnosis was ready to start interferon per the advice of my oncologist at Emory. After reading and speaking with my family and friends in the healthcare field, I decided to get a second opinion. I wouldn't up at Memorial in NY who no longer use interferon as the standard of care for melanoma – for that matter I believe the same holds true at MD Anderson. Although many opt for interferon, the data suggests minimal benefit and to some a high level of discomfort. Read up, be your own advocate and make the choice you feel is best. If that happens to be interferon, then move forward!
Good luck!
-
- June 9, 2016 at 6:20 pm
Hi Christy,
i was diagnosed with 3a disease 5 years ago and at the time of diagnosis was ready to start interferon per the advice of my oncologist at Emory. After reading and speaking with my family and friends in the healthcare field, I decided to get a second opinion. I wouldn't up at Memorial in NY who no longer use interferon as the standard of care for melanoma – for that matter I believe the same holds true at MD Anderson. Although many opt for interferon, the data suggests minimal benefit and to some a high level of discomfort. Read up, be your own advocate and make the choice you feel is best. If that happens to be interferon, then move forward!
Good luck!
-
- June 9, 2016 at 6:58 pm
Welcome to one of the best forums with great patient support and LOTS of good knowledge!
I am stage 3b, I have done Yervoy (Ipi) which is the best FDA approved option for stage 3 right now. Interferon will NOT let you get back to normal life ASAP. It will make you feel very very sick for a year, bad flu sick. It will very much interfere with your normal life for close to no benefit. I would rather do watch and wait over Interferon. Yervoy (Ipi) is a much better immunotherapy drug, that has it's list of side effects but not everyone experiences all of them and most people like myself, are able to work and live normal life without much interruption during treatment.
Something to think about, you don't have to rush into this, we want you to be as informed as possible and make the best choice you can with that knowledge, whatever is best for you.
I wish your doctor was not so Interferon happy, I cannot understand why he would want to continue putting his patients through it when he very well knows the benefit is close to nil.
All the best,
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- June 9, 2016 at 6:58 pm
Welcome to one of the best forums with great patient support and LOTS of good knowledge!
I am stage 3b, I have done Yervoy (Ipi) which is the best FDA approved option for stage 3 right now. Interferon will NOT let you get back to normal life ASAP. It will make you feel very very sick for a year, bad flu sick. It will very much interfere with your normal life for close to no benefit. I would rather do watch and wait over Interferon. Yervoy (Ipi) is a much better immunotherapy drug, that has it's list of side effects but not everyone experiences all of them and most people like myself, are able to work and live normal life without much interruption during treatment.
Something to think about, you don't have to rush into this, we want you to be as informed as possible and make the best choice you can with that knowledge, whatever is best for you.
I wish your doctor was not so Interferon happy, I cannot understand why he would want to continue putting his patients through it when he very well knows the benefit is close to nil.
All the best,
-
- June 9, 2016 at 6:58 pm
Welcome to one of the best forums with great patient support and LOTS of good knowledge!
I am stage 3b, I have done Yervoy (Ipi) which is the best FDA approved option for stage 3 right now. Interferon will NOT let you get back to normal life ASAP. It will make you feel very very sick for a year, bad flu sick. It will very much interfere with your normal life for close to no benefit. I would rather do watch and wait over Interferon. Yervoy (Ipi) is a much better immunotherapy drug, that has it's list of side effects but not everyone experiences all of them and most people like myself, are able to work and live normal life without much interruption during treatment.
Something to think about, you don't have to rush into this, we want you to be as informed as possible and make the best choice you can with that knowledge, whatever is best for you.
I wish your doctor was not so Interferon happy, I cannot understand why he would want to continue putting his patients through it when he very well knows the benefit is close to nil.
All the best,
-
- June 9, 2016 at 7:24 pm
Christy,
You have been given good advice. If Janner hadn't said it, I would have. Kirkwood is going to ride his interferon pony til the end….to hell with the data. Here are two different adjuvant trials that are currently enrolling that were noted in the annual cancer meeting that was just completed in Chicago (ASCO): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html
You have a lot riding on living to see graduations and scraped knees and halloween costumes and playing in puddles. I know you are tired. Many of us here are tired, or have been feeling just as you are, and fully realize it is hard to plow through the data, make it through the surgeries, and then push even harder for appropriate care. But that is what you MUST do…we all do…for ourselves and those that are important to us.
Many of us have traveled for trials…with work…with kids. It is not easy. It is not fun. It is not fair. But, it can be done. I wish you well. Celeste
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- June 9, 2016 at 7:24 pm
Christy,
You have been given good advice. If Janner hadn't said it, I would have. Kirkwood is going to ride his interferon pony til the end….to hell with the data. Here are two different adjuvant trials that are currently enrolling that were noted in the annual cancer meeting that was just completed in Chicago (ASCO): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html
You have a lot riding on living to see graduations and scraped knees and halloween costumes and playing in puddles. I know you are tired. Many of us here are tired, or have been feeling just as you are, and fully realize it is hard to plow through the data, make it through the surgeries, and then push even harder for appropriate care. But that is what you MUST do…we all do…for ourselves and those that are important to us.
Many of us have traveled for trials…with work…with kids. It is not easy. It is not fun. It is not fair. But, it can be done. I wish you well. Celeste
-
- June 9, 2016 at 7:24 pm
Christy,
You have been given good advice. If Janner hadn't said it, I would have. Kirkwood is going to ride his interferon pony til the end….to hell with the data. Here are two different adjuvant trials that are currently enrolling that were noted in the annual cancer meeting that was just completed in Chicago (ASCO): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html
You have a lot riding on living to see graduations and scraped knees and halloween costumes and playing in puddles. I know you are tired. Many of us here are tired, or have been feeling just as you are, and fully realize it is hard to plow through the data, make it through the surgeries, and then push even harder for appropriate care. But that is what you MUST do…we all do…for ourselves and those that are important to us.
Many of us have traveled for trials…with work…with kids. It is not easy. It is not fun. It is not fair. But, it can be done. I wish you well. Celeste
-
- June 9, 2016 at 7:57 pm
Hi Christy, I just read Celeste's post to you and she covered the same topic that I was going to give you!!! I will just give you the links so you can read them if interested. First one is the post by the director of MRF https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/asco-updates-0 and the second is SWOG S1404 from ASCO. The data from Tim is pretty clear about if you don't have ulceration you are wasting your time with Interferon. http://abstracts.asco.org/176/AbstView_176_166411.html I thought that with clinical trials the drug companies picked up the cost which makes me kind of wonder why your insurance would not jump at the chance of not having to pay for treatment!!! Best wishes!!! Ed
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- June 9, 2016 at 7:57 pm
Hi Christy, I just read Celeste's post to you and she covered the same topic that I was going to give you!!! I will just give you the links so you can read them if interested. First one is the post by the director of MRF https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/asco-updates-0 and the second is SWOG S1404 from ASCO. The data from Tim is pretty clear about if you don't have ulceration you are wasting your time with Interferon. http://abstracts.asco.org/176/AbstView_176_166411.html I thought that with clinical trials the drug companies picked up the cost which makes me kind of wonder why your insurance would not jump at the chance of not having to pay for treatment!!! Best wishes!!! Ed
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- June 9, 2016 at 8:29 pm
Sadder fact still, is that the 3% difference that Tim referred to as being discussed was from a study done in 2009, with an update in 2012, and it was posted here in that thread: https://www.melanoma.org/comment/95146#comment-95146
In the body of the paper it states: At 7.6 years median follow-up, 384 recurrences or deaths had occurred in the [IFN group] vs 406 in the observation group….7-year RFS [recurrence free survival] rate was 39% vs 34%. There was no difference in OS [overall survival].
The conslusion of which was: Adjuvant [IFN] for stage III melanoma had a positive impact on RFS, which was margnially significant {researcher's term!!!} and slightly diminished vs the benefit seen at prior follow-up (median, 3.8 years), No significant increase in DMFS or OS was noted in the overall population.
Melanoma provides few easy options. Sorry that the learning curve is steep and conflicted. Hang in there. c
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- June 9, 2016 at 8:29 pm
Sadder fact still, is that the 3% difference that Tim referred to as being discussed was from a study done in 2009, with an update in 2012, and it was posted here in that thread: https://www.melanoma.org/comment/95146#comment-95146
In the body of the paper it states: At 7.6 years median follow-up, 384 recurrences or deaths had occurred in the [IFN group] vs 406 in the observation group….7-year RFS [recurrence free survival] rate was 39% vs 34%. There was no difference in OS [overall survival].
The conslusion of which was: Adjuvant [IFN] for stage III melanoma had a positive impact on RFS, which was margnially significant {researcher's term!!!} and slightly diminished vs the benefit seen at prior follow-up (median, 3.8 years), No significant increase in DMFS or OS was noted in the overall population.
Melanoma provides few easy options. Sorry that the learning curve is steep and conflicted. Hang in there. c
-
- June 9, 2016 at 8:29 pm
Sadder fact still, is that the 3% difference that Tim referred to as being discussed was from a study done in 2009, with an update in 2012, and it was posted here in that thread: https://www.melanoma.org/comment/95146#comment-95146
In the body of the paper it states: At 7.6 years median follow-up, 384 recurrences or deaths had occurred in the [IFN group] vs 406 in the observation group….7-year RFS [recurrence free survival] rate was 39% vs 34%. There was no difference in OS [overall survival].
The conslusion of which was: Adjuvant [IFN] for stage III melanoma had a positive impact on RFS, which was margnially significant {researcher's term!!!} and slightly diminished vs the benefit seen at prior follow-up (median, 3.8 years), No significant increase in DMFS or OS was noted in the overall population.
Melanoma provides few easy options. Sorry that the learning curve is steep and conflicted. Hang in there. c
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- June 9, 2016 at 7:57 pm
Hi Christy, I just read Celeste's post to you and she covered the same topic that I was going to give you!!! I will just give you the links so you can read them if interested. First one is the post by the director of MRF https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/asco-updates-0 and the second is SWOG S1404 from ASCO. The data from Tim is pretty clear about if you don't have ulceration you are wasting your time with Interferon. http://abstracts.asco.org/176/AbstView_176_166411.html I thought that with clinical trials the drug companies picked up the cost which makes me kind of wonder why your insurance would not jump at the chance of not having to pay for treatment!!! Best wishes!!! Ed
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- June 9, 2016 at 8:52 pm
Hi Christy
I had been on interferon for the last 1 year- first month high dose than used Intron pen injections at home- 3 times x10mu a week. I can say that it is not an easy treatment, Im stage 3 – diagnosed in May 2015 and NED after the surgery.
Interferon diminishes the quality of life..( fatigue, headaches, brain fog, liss of apetite, depression- those are what I experieneced during the treatment) I live in Turkey and we did't have Yervoy before but now it is also approved in Turkey so I switch to Yervoy. As orthers say, please check all the options and decide.
If you end up with Interferon, I can give you more tips to handle the side effects based on my experience.
Wishing you all the best and good luck
take care
Ekin
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- June 9, 2016 at 8:52 pm
Hi Christy
I had been on interferon for the last 1 year- first month high dose than used Intron pen injections at home- 3 times x10mu a week. I can say that it is not an easy treatment, Im stage 3 – diagnosed in May 2015 and NED after the surgery.
Interferon diminishes the quality of life..( fatigue, headaches, brain fog, liss of apetite, depression- those are what I experieneced during the treatment) I live in Turkey and we did't have Yervoy before but now it is also approved in Turkey so I switch to Yervoy. As orthers say, please check all the options and decide.
If you end up with Interferon, I can give you more tips to handle the side effects based on my experience.
Wishing you all the best and good luck
take care
Ekin
-
- June 9, 2016 at 8:52 pm
Hi Christy
I had been on interferon for the last 1 year- first month high dose than used Intron pen injections at home- 3 times x10mu a week. I can say that it is not an easy treatment, Im stage 3 – diagnosed in May 2015 and NED after the surgery.
Interferon diminishes the quality of life..( fatigue, headaches, brain fog, liss of apetite, depression- those are what I experieneced during the treatment) I live in Turkey and we did't have Yervoy before but now it is also approved in Turkey so I switch to Yervoy. As orthers say, please check all the options and decide.
If you end up with Interferon, I can give you more tips to handle the side effects based on my experience.
Wishing you all the best and good luck
take care
Ekin
-
- June 10, 2016 at 2:28 am
Christy,
I have also been diagnosed with Stage 3a on April 1st. I saw Dr Kirkwood after my wide local incision and sental node biopsy on May 4th. I had one lymph node test positive with melanoma contained within the capillaries. He recommended axillary node dissection to be sure there were no more lymph nodes that tested positive for melanoma. 17 lymph nodes were removed and all came back negative.
In the meantime my PET scan showed my thyroid was lit up … Went through ultrasound and biopsy on my thyroid and it came back papillary thyroid cancer. I will need to have surgery to remove my thyroid but it is 95% curable and tested negative for melanoma. Kirkwoods office said they are not concerned about the thyroid cancer … Have it removed and forward with melanoma treatment.
So yesterday I go to Dr Kirkwoods office and they tell me that I don't have enough cancer to participate in the clinical trial. Kirkwoods PA tells me I needed to have 2 lymph nodes test positive for melanoma and I only had one …. On May 4th Kirkwood himself said I highly doubt you will have anymore nodes test positive and they knew I only had 1 test positive so why did they even give me the clinical trial papers to begin with. They are recommending interferon with my local oncologist. I read through the clinical trial paperwork and no where does it state you must have 2 lymph nodes to participate.
Today I emailed my concerns to his nurse and am awaiting a reply. I have 4 children and live a very active life … I do not feel comfortable settling for interferon when there are so many other drugs out there. Kirkwood himself told me they have 10 melanoma drugs right now and by the fall they will have 12. So why does he keep referring everyone to interferon.
Christy, please email me and let's chat.
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- June 10, 2016 at 4:08 am
Laulamb-whatever you do-don't let them cut your thyroid out! I had the exact same thing-3b Mel then thyroid lit up showing papillary thyroid cancer-you are right-no big deal, but you can't let it marinate. I was up at mayo and they ablated the tumor (Ian Hayes) -basically injected it with alcohol and it killed the thyroid cancer.-no side effects-same day thing/didn't hurt-no radiation pills etc-no after effects. Your thyroid is really important especially when you are wrestling with Mel.
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- June 13, 2016 at 5:21 pm
Just wanted to share with you…. We are very similar- except I'm 2 years ahead of you. I was diagnosed when my daughter was 6 weeks old- and I was almost 31. Came back stage 3a. After a lot of talking to people and research I decided against interferon – but it is a very personal decision. Just to share hope- I'm 2 years NED with scans coming up a week from today!
You will read inspiring testimonies on hear and get great input. You can do this!
-
- June 13, 2016 at 5:21 pm
Just wanted to share with you…. We are very similar- except I'm 2 years ahead of you. I was diagnosed when my daughter was 6 weeks old- and I was almost 31. Came back stage 3a. After a lot of talking to people and research I decided against interferon – but it is a very personal decision. Just to share hope- I'm 2 years NED with scans coming up a week from today!
You will read inspiring testimonies on hear and get great input. You can do this!
-
- June 13, 2016 at 5:21 pm
Just wanted to share with you…. We are very similar- except I'm 2 years ahead of you. I was diagnosed when my daughter was 6 weeks old- and I was almost 31. Came back stage 3a. After a lot of talking to people and research I decided against interferon – but it is a very personal decision. Just to share hope- I'm 2 years NED with scans coming up a week from today!
You will read inspiring testimonies on hear and get great input. You can do this!
-
- June 10, 2016 at 4:08 am
Laulamb-whatever you do-don't let them cut your thyroid out! I had the exact same thing-3b Mel then thyroid lit up showing papillary thyroid cancer-you are right-no big deal, but you can't let it marinate. I was up at mayo and they ablated the tumor (Ian Hayes) -basically injected it with alcohol and it killed the thyroid cancer.-no side effects-same day thing/didn't hurt-no radiation pills etc-no after effects. Your thyroid is really important especially when you are wrestling with Mel.
-
- June 10, 2016 at 4:08 am
Laulamb-whatever you do-don't let them cut your thyroid out! I had the exact same thing-3b Mel then thyroid lit up showing papillary thyroid cancer-you are right-no big deal, but you can't let it marinate. I was up at mayo and they ablated the tumor (Ian Hayes) -basically injected it with alcohol and it killed the thyroid cancer.-no side effects-same day thing/didn't hurt-no radiation pills etc-no after effects. Your thyroid is really important especially when you are wrestling with Mel.
-
- June 10, 2016 at 2:28 am
Christy,
I have also been diagnosed with Stage 3a on April 1st. I saw Dr Kirkwood after my wide local incision and sental node biopsy on May 4th. I had one lymph node test positive with melanoma contained within the capillaries. He recommended axillary node dissection to be sure there were no more lymph nodes that tested positive for melanoma. 17 lymph nodes were removed and all came back negative.
In the meantime my PET scan showed my thyroid was lit up … Went through ultrasound and biopsy on my thyroid and it came back papillary thyroid cancer. I will need to have surgery to remove my thyroid but it is 95% curable and tested negative for melanoma. Kirkwoods office said they are not concerned about the thyroid cancer … Have it removed and forward with melanoma treatment.
So yesterday I go to Dr Kirkwoods office and they tell me that I don't have enough cancer to participate in the clinical trial. Kirkwoods PA tells me I needed to have 2 lymph nodes test positive for melanoma and I only had one …. On May 4th Kirkwood himself said I highly doubt you will have anymore nodes test positive and they knew I only had 1 test positive so why did they even give me the clinical trial papers to begin with. They are recommending interferon with my local oncologist. I read through the clinical trial paperwork and no where does it state you must have 2 lymph nodes to participate.
Today I emailed my concerns to his nurse and am awaiting a reply. I have 4 children and live a very active life … I do not feel comfortable settling for interferon when there are so many other drugs out there. Kirkwood himself told me they have 10 melanoma drugs right now and by the fall they will have 12. So why does he keep referring everyone to interferon.
Christy, please email me and let's chat.
-
- June 10, 2016 at 2:28 am
Christy,
I have also been diagnosed with Stage 3a on April 1st. I saw Dr Kirkwood after my wide local incision and sental node biopsy on May 4th. I had one lymph node test positive with melanoma contained within the capillaries. He recommended axillary node dissection to be sure there were no more lymph nodes that tested positive for melanoma. 17 lymph nodes were removed and all came back negative.
In the meantime my PET scan showed my thyroid was lit up … Went through ultrasound and biopsy on my thyroid and it came back papillary thyroid cancer. I will need to have surgery to remove my thyroid but it is 95% curable and tested negative for melanoma. Kirkwoods office said they are not concerned about the thyroid cancer … Have it removed and forward with melanoma treatment.
So yesterday I go to Dr Kirkwoods office and they tell me that I don't have enough cancer to participate in the clinical trial. Kirkwoods PA tells me I needed to have 2 lymph nodes test positive for melanoma and I only had one …. On May 4th Kirkwood himself said I highly doubt you will have anymore nodes test positive and they knew I only had 1 test positive so why did they even give me the clinical trial papers to begin with. They are recommending interferon with my local oncologist. I read through the clinical trial paperwork and no where does it state you must have 2 lymph nodes to participate.
Today I emailed my concerns to his nurse and am awaiting a reply. I have 4 children and live a very active life … I do not feel comfortable settling for interferon when there are so many other drugs out there. Kirkwood himself told me they have 10 melanoma drugs right now and by the fall they will have 12. So why does he keep referring everyone to interferon.
Christy, please email me and let's chat.
-
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