› Forums › General Melanoma Community › Diagnosis – Technically 3A – Interferon or no Interferon?
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melanomafighter.
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- March 7, 2011 at 12:56 pm
I am up in the air here wondering if I am not treating myself as I should.
My surgeon says watch and wait because it is so microscopic in my one node.. All the studying I do on here tells me I should be looking further into this. My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me? It was still found there so I am 3A?
I am up in the air here wondering if I am not treating myself as I should.
My surgeon says watch and wait because it is so microscopic in my one node.. All the studying I do on here tells me I should be looking further into this. My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me? It was still found there so I am 3A?
I was making my second opinion phone call today but I do hear that Sloan Kettering in NY will not even offer a treatment either? Maybe I should make the appointment in NYU or Penn or whereever…this is so confusing.
Help ! And have a blessed day !
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- March 7, 2011 at 2:15 pm
Have you met with an oncologist who specializes in melanoma treatment? If not, please do that for yourself– if for no other reason than your peace of mind! I'm a seven-plus year survivor of Stage IIIc and am firmly convinced that it's critical that every patient seek out the best available care and treatment advice at every step of the way. Best wishes to you. I've blogged about the lighter side of my journey at http://www.hotelmelanoma.blogspot.com. Take care.
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- March 7, 2011 at 2:57 pm
Hi,
I am also stage 3a, diagnosed almost 5 years ago. I also had micromets in my sentinal lymph node. I chose to do the year of interferon (read my profile for details). I am happy with my choice. I have had numerous re-occurences since but not because the interferon didnt work…interferon works to delay re-occurence by boosting your immune system and is the only FDA approved treatment for stage 3a (I believe still true, as it was back when I did it). My first re-occurence after I finished the year of Interferon happened about 11 months or so afterwards. I have heard that EVERY single melanoma cell is capable of reproducing…..not like some other cancers where only 40% or 60% of the tumor cells can replicate. I chose to do what my melanoma oncologist who I like and trust recommended me to do and I wanted to do some kind of treatment not do "watch and wait". I have no regrets.
Vermont_Donna
stage 3a, stable after 4 infusions of Ipi
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- March 7, 2011 at 2:57 pm
Hi,
I am also stage 3a, diagnosed almost 5 years ago. I also had micromets in my sentinal lymph node. I chose to do the year of interferon (read my profile for details). I am happy with my choice. I have had numerous re-occurences since but not because the interferon didnt work…interferon works to delay re-occurence by boosting your immune system and is the only FDA approved treatment for stage 3a (I believe still true, as it was back when I did it). My first re-occurence after I finished the year of Interferon happened about 11 months or so afterwards. I have heard that EVERY single melanoma cell is capable of reproducing…..not like some other cancers where only 40% or 60% of the tumor cells can replicate. I chose to do what my melanoma oncologist who I like and trust recommended me to do and I wanted to do some kind of treatment not do "watch and wait". I have no regrets.
Vermont_Donna
stage 3a, stable after 4 infusions of Ipi
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- March 7, 2011 at 2:15 pm
Have you met with an oncologist who specializes in melanoma treatment? If not, please do that for yourself– if for no other reason than your peace of mind! I'm a seven-plus year survivor of Stage IIIc and am firmly convinced that it's critical that every patient seek out the best available care and treatment advice at every step of the way. Best wishes to you. I've blogged about the lighter side of my journey at http://www.hotelmelanoma.blogspot.com. Take care.
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- March 7, 2011 at 7:10 pm
Sloan is probably about the best option that you listed, I would think for a second opinion. And if it gives you piece of mind certainly go for a second opinion. You need to find an Onc. you trust and stay with that one.
Here's my thing on interferon. I was diag, just about a year ago, Stage 3a, 2 of 4 lymph nodes with microscopic amounts of mel. I chose to have a complete lymph node dissection – which luckily came back all clear. I chose not to have interferon, it was the only option offered other than wait and watch. Why? Well as it was explained to me, interferon only gives you a 5-10% advantage; that advantage is not additive but you multiply it. So to keep the math simple if you had a 50% survival rate it would take you to approx. 54% survival (50% * .075). But what turned it for me was that the stats said that interferon patients did not live any longer than those that did not take it. So I did not want to give up a year of my life to the drug. My reasoning.
I hesitate to say I am NED at this point as I have only had my first set of scans, which were all clear. April will be my next set, I don't see or feel anything so here's hoping the scans don't light up!
Good luck to you. Once you make a decision, don't look back!
Mary
Stage 3a
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- March 7, 2011 at 7:10 pm
Sloan is probably about the best option that you listed, I would think for a second opinion. And if it gives you piece of mind certainly go for a second opinion. You need to find an Onc. you trust and stay with that one.
Here's my thing on interferon. I was diag, just about a year ago, Stage 3a, 2 of 4 lymph nodes with microscopic amounts of mel. I chose to have a complete lymph node dissection – which luckily came back all clear. I chose not to have interferon, it was the only option offered other than wait and watch. Why? Well as it was explained to me, interferon only gives you a 5-10% advantage; that advantage is not additive but you multiply it. So to keep the math simple if you had a 50% survival rate it would take you to approx. 54% survival (50% * .075). But what turned it for me was that the stats said that interferon patients did not live any longer than those that did not take it. So I did not want to give up a year of my life to the drug. My reasoning.
I hesitate to say I am NED at this point as I have only had my first set of scans, which were all clear. April will be my next set, I don't see or feel anything so here's hoping the scans don't light up!
Good luck to you. Once you make a decision, don't look back!
Mary
Stage 3a
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- March 7, 2011 at 7:42 pm
Thanks so much for all of your input. I need to make the appointment. I need to make a lot of appointments. I need a dermatology appointment for a full check, I need a second opinion appointment..I am dragging my feet now; now that the surgery is over and I am on the mend, it is easier to just put it on the back burner…NOT a good idea, but it is what I am doing.
I totally understand what you are saying about the 50 % however no one told me anything about any drug that is a possibility. I just want to hear the pros and cons and let ME make a decision. It was not even a card on the table.
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- March 7, 2011 at 7:42 pm
Thanks so much for all of your input. I need to make the appointment. I need to make a lot of appointments. I need a dermatology appointment for a full check, I need a second opinion appointment..I am dragging my feet now; now that the surgery is over and I am on the mend, it is easier to just put it on the back burner…NOT a good idea, but it is what I am doing.
I totally understand what you are saying about the 50 % however no one told me anything about any drug that is a possibility. I just want to hear the pros and cons and let ME make a decision. It was not even a card on the table.
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- March 7, 2011 at 8:27 pm
Only a melanoma specialist can tell you what's right for you, but there are options out there beyond interferon. I did biochemotherapy (after a Stage IIIc diagnosis, 14 malignant nodes) which includes interferon in the cocktail– not suggesting that's the right thing for you, but it's out there. And I haven't had a recurrence after seven-plus years. I've also read posts by Stage III patients in clinical trials of Ipilumabab. Just please make those appointments.
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- March 7, 2011 at 10:26 pm
I don't believe Biochemo is offered to those with Stage 3a. If anyone knows of a doc who would give this, let me know! I actually asked a team of docs at a melanoma symposium (who were experts in bio chemo) if they would give biochemo to someone with Stage 3 – they said only under certain circumstances but not for stage 3a. My husband would have done it if it was available to him. I think it would be worth the hell because I know of a number of people who have had complete responses. I also think combos of drugs will always give better results than a single one (like interferon).
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- March 7, 2011 at 10:26 pm
I don't believe Biochemo is offered to those with Stage 3a. If anyone knows of a doc who would give this, let me know! I actually asked a team of docs at a melanoma symposium (who were experts in bio chemo) if they would give biochemo to someone with Stage 3 – they said only under certain circumstances but not for stage 3a. My husband would have done it if it was available to him. I think it would be worth the hell because I know of a number of people who have had complete responses. I also think combos of drugs will always give better results than a single one (like interferon).
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- March 7, 2011 at 8:27 pm
Only a melanoma specialist can tell you what's right for you, but there are options out there beyond interferon. I did biochemotherapy (after a Stage IIIc diagnosis, 14 malignant nodes) which includes interferon in the cocktail– not suggesting that's the right thing for you, but it's out there. And I haven't had a recurrence after seven-plus years. I've also read posts by Stage III patients in clinical trials of Ipilumabab. Just please make those appointments.
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- March 7, 2011 at 9:55 pm
Hi Mary – I was just curious if you are still considered Stage 3a if you have had multiple recurrences. Are you on the adjuvant Ipi trial that is blind?
Emily
Wife of Mike, Stage 3a
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- March 8, 2011 at 4:06 am
Sorry the note above was not for Mary…it was for Donna. Also Remember this when making decisions about adjuvant therapy trials.. some studies have time limits. The adjuvant ipi trial does take stage 3a but only within 12 weeks of surgery to remove nodes. It is a randomized blind study and you might not get the drug.
http://clinicaltrials.gov/ct2/show/NCT00636168?term=ipilimumab+melanoma&recr=Open&rank=4 -
- March 8, 2011 at 10:13 am
Hi EmilyandMike,
I believe that I am still stage 3a even with numerous intransit metastases (in early December I had 50 to 60 melanoma tumors on my leg, the size f a penicl eraser or smaller, and some sub q lumps as big or bigger than a quarter). I think that if the melanoma does not go beyond the nodal basin (for me my right groin) that you stage stays the same. I would go to stage 4 if the melanoma was to move beyond my leg to an organ, or somewhere else in my body. My intransit mets have been biopsied (not all of them) and they are the same as the original tumor, so they are metastases not new primaries.
As far as Ipi, I was offered that as well as bio chemo as I have been on Interferon, Leukine, two rounds of radiation and numerous surgeries to remove those resectable and an isolated limb perfusion, all with the melanoma coming back. I am in a clinical trial of Ipi with no arm…participants only get the ipi…..I believe it is 3mg per kg of body weight? That I will have to look up. My oncology nurse practitioner said a previous study they participated in was giving people 10mg per kg of bosy weight and she said people had such bad side effects, that the colitis was life threatening and that some people died (not sure if it was their study or just somewhere at that dose).
I have had complete eradication of ALL my many tumors and sub q's on 4 doeses of Ipi. I started seeing a response after the third and the 4th cleaned them all up, amazingly so in a matter of days. My oncologist is quite impressed and pleased at my response as he feared for my life, knowing that as fast as it was multiplying I was soon to be stage 4.
Hope this answers your questions!
Vermont_Donna
stage 3a
stable after 4 infusions
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- March 8, 2011 at 10:13 am
Hi EmilyandMike,
I believe that I am still stage 3a even with numerous intransit metastases (in early December I had 50 to 60 melanoma tumors on my leg, the size f a penicl eraser or smaller, and some sub q lumps as big or bigger than a quarter). I think that if the melanoma does not go beyond the nodal basin (for me my right groin) that you stage stays the same. I would go to stage 4 if the melanoma was to move beyond my leg to an organ, or somewhere else in my body. My intransit mets have been biopsied (not all of them) and they are the same as the original tumor, so they are metastases not new primaries.
As far as Ipi, I was offered that as well as bio chemo as I have been on Interferon, Leukine, two rounds of radiation and numerous surgeries to remove those resectable and an isolated limb perfusion, all with the melanoma coming back. I am in a clinical trial of Ipi with no arm…participants only get the ipi…..I believe it is 3mg per kg of body weight? That I will have to look up. My oncology nurse practitioner said a previous study they participated in was giving people 10mg per kg of bosy weight and she said people had such bad side effects, that the colitis was life threatening and that some people died (not sure if it was their study or just somewhere at that dose).
I have had complete eradication of ALL my many tumors and sub q's on 4 doeses of Ipi. I started seeing a response after the third and the 4th cleaned them all up, amazingly so in a matter of days. My oncologist is quite impressed and pleased at my response as he feared for my life, knowing that as fast as it was multiplying I was soon to be stage 4.
Hope this answers your questions!
Vermont_Donna
stage 3a
stable after 4 infusions
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- March 8, 2011 at 4:06 am
Sorry the note above was not for Mary…it was for Donna. Also Remember this when making decisions about adjuvant therapy trials.. some studies have time limits. The adjuvant ipi trial does take stage 3a but only within 12 weeks of surgery to remove nodes. It is a randomized blind study and you might not get the drug.
http://clinicaltrials.gov/ct2/show/NCT00636168?term=ipilimumab+melanoma&recr=Open&rank=4 -
- March 7, 2011 at 9:55 pm
Hi Mary – I was just curious if you are still considered Stage 3a if you have had multiple recurrences. Are you on the adjuvant Ipi trial that is blind?
Emily
Wife of Mike, Stage 3a
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- March 7, 2011 at 10:18 pm
Hello
We made our decision about forgoing Interferon based on the research studies and the quality of life issues that Interferon creates. My husband has the same stats as you – 1.3 on the back, one or two cells in the sentinel node. His docs were on the fence about interferon. It is an old drug and its benefits have been questioned for a long time. Unfortunately it is all that is available for stage 3a at the moment – unless you can qualify for a trial (and he couldnt in 2009 he was diagnosed).
It is a choice you need to make and no one else can do that for you….but this letter from some docs at MD Anderson kind of summed it up for us in a nutshell:
http://jco.ascopubs.org/content/28/2/e15.full
One thing that recently freaked me about Interferon was a study published in Nature about Interferon gamma (this is different then Interferon Alpha which is used for melanoma. It has been used to treat cancer and is even mentioned in the link above. This new study said that Interferon Gamma actually promotes skin cancer in mice. http://www.modernmedicine.com/modernmedicine/Dermatology/Immune-protein-promotes-skin-cancer/ArticleStandard/Article/detail/707750?contextCategoryId=40139
All my best to you in making a really hard decision.
Emily
Wife of Mike, Stage 3a – 18 mos NED
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- March 7, 2011 at 10:18 pm
Hello
We made our decision about forgoing Interferon based on the research studies and the quality of life issues that Interferon creates. My husband has the same stats as you – 1.3 on the back, one or two cells in the sentinel node. His docs were on the fence about interferon. It is an old drug and its benefits have been questioned for a long time. Unfortunately it is all that is available for stage 3a at the moment – unless you can qualify for a trial (and he couldnt in 2009 he was diagnosed).
It is a choice you need to make and no one else can do that for you….but this letter from some docs at MD Anderson kind of summed it up for us in a nutshell:
http://jco.ascopubs.org/content/28/2/e15.full
One thing that recently freaked me about Interferon was a study published in Nature about Interferon gamma (this is different then Interferon Alpha which is used for melanoma. It has been used to treat cancer and is even mentioned in the link above. This new study said that Interferon Gamma actually promotes skin cancer in mice. http://www.modernmedicine.com/modernmedicine/Dermatology/Immune-protein-promotes-skin-cancer/ArticleStandard/Article/detail/707750?contextCategoryId=40139
All my best to you in making a really hard decision.
Emily
Wife of Mike, Stage 3a – 18 mos NED
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- March 8, 2011 at 4:54 am
I would highly recommend that you speak to Dr. Anna Pavlick at NYU, who is very well known in the melanoma field. Just google her name. She is a melanoma specialist and is practical and down to earth. I guarantee that you would love her. It's a tough decision and as others have said, don't regret your decision. Do your research and do what's best for you. In the meantime, do your best to keep the stress away…enjoy the things that you value. Best wishes to you and everyone else on here for a long life.
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- March 12, 2011 at 4:23 am
Hello, I have to agree with Mary that is exactly why I quit the low dose shots. I was so sick with those and said, no way I can do this a year and give up a year when they are telling me I only have a chance at 5. Why lose one to maybe gain one, its a wash. But, I also was told if you can get through the 30 day high dose its enough protection as if you did the year so that is what I went for and I did try the low dose but couldn't have did them and worked and with both my surgeries and recoveries plus the month for the injections I couldn't stay off work. I quit and went back to work and my dr agreed with what I was saying so he gave me a work release and been NED so far. Good luck in whatever you decide Teresa in Indiana
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- March 12, 2011 at 4:23 am
Hello, I have to agree with Mary that is exactly why I quit the low dose shots. I was so sick with those and said, no way I can do this a year and give up a year when they are telling me I only have a chance at 5. Why lose one to maybe gain one, its a wash. But, I also was told if you can get through the 30 day high dose its enough protection as if you did the year so that is what I went for and I did try the low dose but couldn't have did them and worked and with both my surgeries and recoveries plus the month for the injections I couldn't stay off work. I quit and went back to work and my dr agreed with what I was saying so he gave me a work release and been NED so far. Good luck in whatever you decide Teresa in Indiana
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- March 8, 2011 at 4:54 am
I would highly recommend that you speak to Dr. Anna Pavlick at NYU, who is very well known in the melanoma field. Just google her name. She is a melanoma specialist and is practical and down to earth. I guarantee that you would love her. It's a tough decision and as others have said, don't regret your decision. Do your research and do what's best for you. In the meantime, do your best to keep the stress away…enjoy the things that you value. Best wishes to you and everyone else on here for a long life.
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