› Forums › General Melanoma Community › Interferon – yes or no?
- This topic has 26 replies, 11 voices, and was last updated 14 years ago by
akls.
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- May 14, 2011 at 4:27 am
If you were newly diagnosed today and your oncologist recommended interferon treatment but didn't
say much about the alternatives, what would you say?Thanks for any opinions that you may have.
Frank from Australia
If you were newly diagnosed today and your oncologist recommended interferon treatment but didn't
say much about the alternatives, what would you say?Thanks for any opinions that you may have.
Frank from Australia
- Replies
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- May 14, 2011 at 1:58 pm
Frank,
"Newly diagnosed" is a wide open phrase! I was newly diagnosed and I was already stage 3b. I know of a young man who died recently who was newly diagnosed at stage 4, and was dead less than 6 months later. Some are newly diagnosed at stage 1…you know all this, but I'm pointing out that "newly diagnosed" will mean different things to different people.
If I were newly diagnosed just as I was at 3b, I'd do just as I did. I was only offered Interferon. Being new to all this, it never occurred to me to ask about other options, but even if I had, I know me well enough to know that I'd decline them, just like I did Interferon.
I declined because nothing is going to be a full-blown guarantee that it's going to cure the melanoma or 100% protect me from a recurrence. No matter what is offered, there will be mean side effects, and I know my body well enough to know that I'll experience the rarer, meaner ones. If something's going to happen to a small percent of the population, I'll be in that small percent. I've got a history of that, no kidding!
Because I know there's a statistical chance of recurrence in my lungs or brain, I want my body in the best possible shape to handle whatever fighting a recurrence will look like. I'm not watching and waiting, I'm doing my best to make sure I'm in the best possible place physically, emotionally, and spiritually if I need to put myself through hell to live.
I'll treat what needs to be treated when it needs to be, just like I treated my new diagnosis in 2008 how it needed to be.
Good question.
Grace and peace,
Carol
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- May 15, 2011 at 12:06 pm
Thanks Carol. It sounds like you gave a lot of thought to your decision to decline interferon. I
appreciate your comments and the opinions of everyone else who has responded so far.One reason why I posted this topic was because there appears to be a large number of people who
visit this forum daily and are not members. Consequently, we are unable to know what info
they might be looking for. Perhaps they are wondering about interferon treatment and what
it involves? Maybe they want to know how others have handled the decision-making process?Wishing you joy and peace.
Frank from Australia
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- May 15, 2011 at 12:06 pm
Thanks Carol. It sounds like you gave a lot of thought to your decision to decline interferon. I
appreciate your comments and the opinions of everyone else who has responded so far.One reason why I posted this topic was because there appears to be a large number of people who
visit this forum daily and are not members. Consequently, we are unable to know what info
they might be looking for. Perhaps they are wondering about interferon treatment and what
it involves? Maybe they want to know how others have handled the decision-making process?Wishing you joy and peace.
Frank from Australia
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- May 14, 2011 at 1:58 pm
Frank,
"Newly diagnosed" is a wide open phrase! I was newly diagnosed and I was already stage 3b. I know of a young man who died recently who was newly diagnosed at stage 4, and was dead less than 6 months later. Some are newly diagnosed at stage 1…you know all this, but I'm pointing out that "newly diagnosed" will mean different things to different people.
If I were newly diagnosed just as I was at 3b, I'd do just as I did. I was only offered Interferon. Being new to all this, it never occurred to me to ask about other options, but even if I had, I know me well enough to know that I'd decline them, just like I did Interferon.
I declined because nothing is going to be a full-blown guarantee that it's going to cure the melanoma or 100% protect me from a recurrence. No matter what is offered, there will be mean side effects, and I know my body well enough to know that I'll experience the rarer, meaner ones. If something's going to happen to a small percent of the population, I'll be in that small percent. I've got a history of that, no kidding!
Because I know there's a statistical chance of recurrence in my lungs or brain, I want my body in the best possible shape to handle whatever fighting a recurrence will look like. I'm not watching and waiting, I'm doing my best to make sure I'm in the best possible place physically, emotionally, and spiritually if I need to put myself through hell to live.
I'll treat what needs to be treated when it needs to be, just like I treated my new diagnosis in 2008 how it needed to be.
Good question.
Grace and peace,
Carol
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- May 14, 2011 at 2:24 pm
When my husband was diagnosed in January 2010, we educated ourselves BIG TIME and even went to both Dana Farber and Sloan Kettering for opinions on his case and treatment. We were only offered watch and wait. As most people who read this Board know from my posts, we chose interferon and he just completed his year this past weekend. At the time, we were not offered any other alternatives for his Stage 3 (we aren't even really sure he is stage 3 as he had mucosal melanoma) and most of the doctors don't feel the staging works the same in this form of melanoma). However, since he had surgery and the one and only original tumor was removed, I consider him Stage 3. Our hope was to bide time while other treatments were being tested. During his year of treatment, he has remained NED and Ipi was FDA approved. We are anxious, like everyone else, for more promising treatments in the fight against melanoma to be proved effective. But as everyone knows, this is a slow and steady process with clinical trials.
I guess, my point, is that your question, also raises a bunch more questions, like what treatment alternatives are really available to you if you are Stage 3, and would you rather take interferon or be on a clinical trail with the chance of a placebo?? Individual choice, and everyone should get educated and decide what works best for them. I hope that eventually interferon is a thing of the past, and that better treatments come along ASAP, I just don't think we are there yet. I just love that on this Board, interferon can be discussed and we generally support each and every individual who makes the decision to go that route, and support each and every individual who decides to watch and wait, and each and every individual who decides for a clinical trial. The other main melanoma site, is only negative on interferon, and I didn't feel supported on our decision making and reasoning, so I come here for discussion and encouragement. Valerie (Phil's wife)
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- May 14, 2011 at 3:00 pm
Like Phil, my son was also only given interferon as the only choice besides wait and watch. He also has mucosal melanoma and many of the trials I saw excluded that.
Now that the year is behind him, I think he would do it again. It was not an easy year but he is young and was able to live his life in spite of it without major side effects (after the first month, which was rough)
Lets hope something better will come along…soon!… for those newly dx stage 3
Becky
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- May 14, 2011 at 3:00 pm
Like Phil, my son was also only given interferon as the only choice besides wait and watch. He also has mucosal melanoma and many of the trials I saw excluded that.
Now that the year is behind him, I think he would do it again. It was not an easy year but he is young and was able to live his life in spite of it without major side effects (after the first month, which was rough)
Lets hope something better will come along…soon!… for those newly dx stage 3
Becky
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- May 14, 2011 at 2:24 pm
When my husband was diagnosed in January 2010, we educated ourselves BIG TIME and even went to both Dana Farber and Sloan Kettering for opinions on his case and treatment. We were only offered watch and wait. As most people who read this Board know from my posts, we chose interferon and he just completed his year this past weekend. At the time, we were not offered any other alternatives for his Stage 3 (we aren't even really sure he is stage 3 as he had mucosal melanoma) and most of the doctors don't feel the staging works the same in this form of melanoma). However, since he had surgery and the one and only original tumor was removed, I consider him Stage 3. Our hope was to bide time while other treatments were being tested. During his year of treatment, he has remained NED and Ipi was FDA approved. We are anxious, like everyone else, for more promising treatments in the fight against melanoma to be proved effective. But as everyone knows, this is a slow and steady process with clinical trials.
I guess, my point, is that your question, also raises a bunch more questions, like what treatment alternatives are really available to you if you are Stage 3, and would you rather take interferon or be on a clinical trail with the chance of a placebo?? Individual choice, and everyone should get educated and decide what works best for them. I hope that eventually interferon is a thing of the past, and that better treatments come along ASAP, I just don't think we are there yet. I just love that on this Board, interferon can be discussed and we generally support each and every individual who makes the decision to go that route, and support each and every individual who decides to watch and wait, and each and every individual who decides for a clinical trial. The other main melanoma site, is only negative on interferon, and I didn't feel supported on our decision making and reasoning, so I come here for discussion and encouragement. Valerie (Phil's wife)
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- May 14, 2011 at 3:02 pm
I am currently in my 7th month of Interferon and that was the only option I was given for stage IIIC. I did not know to ask about other options either, but I do not regret the decision that I have made. So far I have been NED for 9 months. There are many success stories of people who have done Interferon. Another good option may be to try the 1 month of high dose Interferon and see how you feel. You can always quite if side effects are too bad. Mine have been manageable so far. 3 1/2 more months to go.
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- May 14, 2011 at 3:02 pm
I am currently in my 7th month of Interferon and that was the only option I was given for stage IIIC. I did not know to ask about other options either, but I do not regret the decision that I have made. So far I have been NED for 9 months. There are many success stories of people who have done Interferon. Another good option may be to try the 1 month of high dose Interferon and see how you feel. You can always quite if side effects are too bad. Mine have been manageable so far. 3 1/2 more months to go.
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- May 14, 2011 at 7:13 pm
After surgeries, I was offered interferon by an onc who said that it statistically doesn't affect survival rates but it was the only thing there really was for stage 3. When I asked if SHE would do it, she said she might "try" it and see how bad the side effects were. In other words, probably wouldn't help but might not hurt either.
This is the same onc who said that there is NO treatment for melanoma except surgery! I asked "so if it returns we just keep cutting until it mets to a place we can no longer cut and then I die?" And she said "yes." This from a 35 year old onc! Needles to say, I changed oncs.
I always ask my surgeons, oncs and radiologist what they would do if I were their mom or sister and I watch their faces real close to see if they are being truthful!
I tried interferon and biochemo with no good response. I wonder how much damage I did to myself.
Most newly diagnosed people still think oncologists walk on water and they will do whatever the doctor says. Didn't we all? I think doctors are barbaric to even suggest interferon since it is so toxic and doesn't affect survival rates. Right now, if a doctor even suggested interferon I would switch doctors. It shows me he/she is not up to date.
Nicki, stage 3b, scalp
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- May 14, 2011 at 7:13 pm
After surgeries, I was offered interferon by an onc who said that it statistically doesn't affect survival rates but it was the only thing there really was for stage 3. When I asked if SHE would do it, she said she might "try" it and see how bad the side effects were. In other words, probably wouldn't help but might not hurt either.
This is the same onc who said that there is NO treatment for melanoma except surgery! I asked "so if it returns we just keep cutting until it mets to a place we can no longer cut and then I die?" And she said "yes." This from a 35 year old onc! Needles to say, I changed oncs.
I always ask my surgeons, oncs and radiologist what they would do if I were their mom or sister and I watch their faces real close to see if they are being truthful!
I tried interferon and biochemo with no good response. I wonder how much damage I did to myself.
Most newly diagnosed people still think oncologists walk on water and they will do whatever the doctor says. Didn't we all? I think doctors are barbaric to even suggest interferon since it is so toxic and doesn't affect survival rates. Right now, if a doctor even suggested interferon I would switch doctors. It shows me he/she is not up to date.
Nicki, stage 3b, scalp
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- May 14, 2011 at 8:03 pm
i got the 'watch and wait' and interferon from one consult…the other consult gave me:
1.watch and wait
2.Leukine and radiation
3. ipi
4. biochemotherapy and radiation
so you see? i am all over the board and confused…still looking at clinical trials but, for adjuvent therapy not much out there…the problem is (seems to me) there was only one treatment studied to any measurable accuracy and that is interferon…while all these new treatment s came on line with no measures as to effectiveness…so i question putting my body at extreme risk with no measurable outcomes…but we all hope, don't we?
do we through everything but the kitchen sink at it and hope for the best
do we surrender and hope for the best?
do we do standard treatment and still hope for the best?
boots
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- May 14, 2011 at 8:03 pm
i got the 'watch and wait' and interferon from one consult…the other consult gave me:
1.watch and wait
2.Leukine and radiation
3. ipi
4. biochemotherapy and radiation
so you see? i am all over the board and confused…still looking at clinical trials but, for adjuvent therapy not much out there…the problem is (seems to me) there was only one treatment studied to any measurable accuracy and that is interferon…while all these new treatment s came on line with no measures as to effectiveness…so i question putting my body at extreme risk with no measurable outcomes…but we all hope, don't we?
do we through everything but the kitchen sink at it and hope for the best
do we surrender and hope for the best?
do we do standard treatment and still hope for the best?
boots
-
- May 14, 2011 at 8:03 pm
i got the 'watch and wait' and interferon from one consult…the other consult gave me:
1.watch and wait
2.Leukine and radiation
3. ipi
4. biochemotherapy and radiation
so you see? i am all over the board and confused…still looking at clinical trials but, for adjuvent therapy not much out there…the problem is (seems to me) there was only one treatment studied to any measurable accuracy and that is interferon…while all these new treatment s came on line with no measures as to effectiveness…so i question putting my body at extreme risk with no measurable outcomes…but we all hope, don't we?
do we through everything but the kitchen sink at it and hope for the best
do we surrender and hope for the best?
do we do standard treatment and still hope for the best?
boots
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- May 14, 2011 at 8:17 pm
Hey Boots!
The answers, in order, to your questions:
1: yes
2: yes
3: yes
No matter what each of us decided, we hoped for the best. You will too. Don't let your confusion get the best of you. Each option you've been given is a valid option. But not all may be equally valid for YOU. Therein lies the rub.
You're a smart cookie and you've investigated the good, the bad, and the ugly of each of your options I bet. Chart the WORST each has to offer as well as any stats that are relevant to you. Chart the pluses each has to offer and the stats relevant to you.
Now, you know you better than anyone. Start eliminating those options that yield stuff you don't or can't live with, depending on your overall health. If you read my respinse to this question, you know that not pursuing Interferon was soemthing I could live with. In 2008 that was my only option. Options change. My body's reaction to chemicals doesn't.
What can you live with should the worse side effects happen? What will you opt not to live with should the worse effects happen? I think you can lay your confusion aside if you tackle this head on.
Lord, in Your mercy, clear Boots confusion and lead her in the best way for HER. Thank you! Amen.
Grace and peace,
Carol
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- May 14, 2011 at 8:17 pm
Hey Boots!
The answers, in order, to your questions:
1: yes
2: yes
3: yes
No matter what each of us decided, we hoped for the best. You will too. Don't let your confusion get the best of you. Each option you've been given is a valid option. But not all may be equally valid for YOU. Therein lies the rub.
You're a smart cookie and you've investigated the good, the bad, and the ugly of each of your options I bet. Chart the WORST each has to offer as well as any stats that are relevant to you. Chart the pluses each has to offer and the stats relevant to you.
Now, you know you better than anyone. Start eliminating those options that yield stuff you don't or can't live with, depending on your overall health. If you read my respinse to this question, you know that not pursuing Interferon was soemthing I could live with. In 2008 that was my only option. Options change. My body's reaction to chemicals doesn't.
What can you live with should the worse side effects happen? What will you opt not to live with should the worse effects happen? I think you can lay your confusion aside if you tackle this head on.
Lord, in Your mercy, clear Boots confusion and lead her in the best way for HER. Thank you! Amen.
Grace and peace,
Carol
-
- May 14, 2011 at 8:03 pm
i got the 'watch and wait' and interferon from one consult…the other consult gave me:
1.watch and wait
2.Leukine and radiation
3. ipi
4. biochemotherapy and radiation
so you see? i am all over the board and confused…still looking at clinical trials but, for adjuvent therapy not much out there…the problem is (seems to me) there was only one treatment studied to any measurable accuracy and that is interferon…while all these new treatment s came on line with no measures as to effectiveness…so i question putting my body at extreme risk with no measurable outcomes…but we all hope, don't we?
do we through everything but the kitchen sink at it and hope for the best
do we surrender and hope for the best?
do we do standard treatment and still hope for the best?
boots
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- May 15, 2011 at 1:43 pm
Hi Frank,
I would get several other opinions, do as much research as I can in a short amount of time and make a decision. I'd probably look for another onc. if there are several in the area.
God Bless,
Jim M.
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- May 15, 2011 at 2:50 pm
HI
Mine was two years ago and at that time I went to two boston melanoma specialists and was told at 3C there were no other options. They both seemed to say if you want to do interferon do it but stop when it starts to be a "quality of life" issue, which I took as meaning if you were wasting that year of interferon feeling soo bad you were not enjoying that time stop. I would say both suggested I try the one month high dose and then it was totally up to me to try the year. At that time my husband and I felt they had a very fatalistic type attitude – kind of like well there is nothing we can do to help you. All we can do is wait and HOPE that it does not come back. At that time it was very hard to hear, but now I get it, they just didnt know what to do to help stage 3.
I made the decision to try it and see. I was able to do high dose no problem and about 4 months of interferon until my liver couldnt tolerate it anymore. It did beat me up(so I now understand what the doctors meant about dont let it rob you of time and that some people just dont have time to spare) – but I was glad I at least tried, and I admire those who can do the whole year. I am currently NED over 2 years and who knows why? surgery got it all? radiaiton prevented it from locally spreading? did the interferon help who knows?
my big thought I came up with is HOPE is the most important part of all of this, also of course taking care of yourself spiritually, emotionally and physically but HOPE I believe is what we all have in common and keeps us strong!
laurie from maine
ps yes and of course research which is why this site is sooo wonderful with the information and support
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- May 15, 2011 at 2:50 pm
HI
Mine was two years ago and at that time I went to two boston melanoma specialists and was told at 3C there were no other options. They both seemed to say if you want to do interferon do it but stop when it starts to be a "quality of life" issue, which I took as meaning if you were wasting that year of interferon feeling soo bad you were not enjoying that time stop. I would say both suggested I try the one month high dose and then it was totally up to me to try the year. At that time my husband and I felt they had a very fatalistic type attitude – kind of like well there is nothing we can do to help you. All we can do is wait and HOPE that it does not come back. At that time it was very hard to hear, but now I get it, they just didnt know what to do to help stage 3.
I made the decision to try it and see. I was able to do high dose no problem and about 4 months of interferon until my liver couldnt tolerate it anymore. It did beat me up(so I now understand what the doctors meant about dont let it rob you of time and that some people just dont have time to spare) – but I was glad I at least tried, and I admire those who can do the whole year. I am currently NED over 2 years and who knows why? surgery got it all? radiaiton prevented it from locally spreading? did the interferon help who knows?
my big thought I came up with is HOPE is the most important part of all of this, also of course taking care of yourself spiritually, emotionally and physically but HOPE I believe is what we all have in common and keeps us strong!
laurie from maine
ps yes and of course research which is why this site is sooo wonderful with the information and support
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