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Which way to turn? Interferon or surgery?

Forums General Melanoma Community Which way to turn? Interferon or surgery?

  • Post
    filmer
    Participant

    I'm a 60 year old in great physical shape…except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

    I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

    I'm a 60 year old in great physical shape…except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

    I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

    Recently, I noticed swelling in the groin lymph nodes that were biopsied. I had surgery on dec. 8, 2010 to explore, and if necessary remove affected nodes. Melanoma was found in one node and a few others were suspect and were removed. 

    Now, my surgeon and a medical oncologist he recommended at Mt. Sinai in Miami Beach have recommended Interferon treatment. Unfortunately, it did not seen a very palatable course of action due to the 3-5% success rate and the debilitating side effects and damage caused by it.

    To get a second opinion, I have been to the Moffitt Cancer Center in Tampa, Fl. This is where my confusion starts.

    The Dr.'s at Moffitt have a different philosophy: They conferred after reviewing all my records and tests and decided my recent surgery was "incomplete". They want to go back into the same area and "clean out " all the lymph nodes in my groin AND my pelvis on Feb. 10. My problem here is that I do not feel healed from the recent surgery (I still have a drain 6 weeks later) and they tell me there is a 30% or better chance of  serious "wound problems" with this surgery. I need some help with my decision . Has anyone out there been in my shoes?

    Many Thanks!

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  • Replies
      NancyD
      Participant

      I too am 60 years old, overweight but healthy–except the melanoma thing!

      I was 54 when diagnosed, I did the excision/sentinel node surgery, one node had micrometasteses, then the lymph node dissection surgery.  Two weeks later I was back in as it was infected, I spent 4 days in hospital on IV antibiotics.  I then did the year of interferon.  

      That was over 6 years ago.  Would I do it again, YOU BET!  Don't forget, someone has to be the 3-5%, it may be you, I'm hopeful it's me.  My Dr. based the interferon treatment on my weight, etc for the high dose month.  That was really tough.  However, she was sure I should only be doing 10MU for the tri-weekly shots.  Because of that I functioned quite well for that next 11 months.  That may be an option worth discussing with your oncologist.

      Since your melanoma returned after your first '08 surgery, I would think it would be prudent to take their advice on additional surgery and perhaps interferon.

      Of course, this is just my 2-cents.  I wish you well as you proceed.

      Nancy D

      Stage 3B

      Vacaville, CA

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        filmer
        Participant

        Thank you Nancy. I'm glad your situation has improved so much. Your comments are highly appreciated!

        I know I'm in for it one way or the other!

        Ralph

        Stage 2B

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        filmer
        Participant

        Thank you Nancy. I'm glad your situation has improved so much. Your comments are highly appreciated!

        I know I'm in for it one way or the other!

        Ralph

        Stage 2B

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      NancyD
      Participant

      I too am 60 years old, overweight but healthy–except the melanoma thing!

      I was 54 when diagnosed, I did the excision/sentinel node surgery, one node had micrometasteses, then the lymph node dissection surgery.  Two weeks later I was back in as it was infected, I spent 4 days in hospital on IV antibiotics.  I then did the year of interferon.  

      That was over 6 years ago.  Would I do it again, YOU BET!  Don't forget, someone has to be the 3-5%, it may be you, I'm hopeful it's me.  My Dr. based the interferon treatment on my weight, etc for the high dose month.  That was really tough.  However, she was sure I should only be doing 10MU for the tri-weekly shots.  Because of that I functioned quite well for that next 11 months.  That may be an option worth discussing with your oncologist.

      Since your melanoma returned after your first '08 surgery, I would think it would be prudent to take their advice on additional surgery and perhaps interferon.

      Of course, this is just my 2-cents.  I wish you well as you proceed.

      Nancy D

      Stage 3B

      Vacaville, CA

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      Vermont_Donna
      Participant

      Wow, a tough spot to be in! It does sound like additional surgery may be needed, but I would want to know based on what are they thinking? It is hard to reach the nodes in the pelvis I thought, that is a much deeper surgery. It does seem that melanoma has progressed into your lymph nodes ie they found one or more that were positive. the lymph nodes "catch" things as the fluid is filtered through and so this is a good thing, to remove the affected lymph nodes. The negative thing is our bodies still make lymph fluid and where is it going to go after the lymph nodes are removed? Your body has to reroute the lymph channels and the other lymph nodes not removed need to be kept clear so lymph fluid will drain and not back up into your leg and pelvis (therefore the need for lymphadema treatment by a skilled and trained physical therapist with lymphadema training). Lymphadema treatment can help you manage the swelling that can occur with lymph node removals. It can be long and tedious (I went three times a week, had the lymph massage and drainage, then the wrapping of my leg (my mummy leg) and this went on for 6 weeks. Uncomfortable?? Yes! Depressing? Yes! And then once the leg swelling is better you are measured for and fitted with a specially made $600 compression panty hose, with one leg missing…this actually helps quite a bit and I have grown accustomed to wearing it and my leg feels weird without it now. It is part of my life. LIFE being the key word here! I have had melanoma for 4.5 years and I am still living! I also did the 11 months if interferon shots. It carries a small percentage of delaying re-occurence. I took a year off from work, did the shots and really fatigue was the biggest side effect. I still "took care of" home, my teenage kids, cleaned, cooked, etc. I just slept alot. I would do it all again in a heartbeat. There are not a lot of options for us stage 3 ers out here. Good luck and whatever you decide for treatment, have no regrets, dont look back. make the best decision that fits you and your life.

      Vermont_Donna, stage 31, currently doing ipi

      ps I was able to get SSDI disability. Oh and I did get a wound infection, in fact several times and ended up in the hospital on IV antibiotics and a drain…not fun….but it is a risk of surgery, etc

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      Vermont_Donna
      Participant

      Wow, a tough spot to be in! It does sound like additional surgery may be needed, but I would want to know based on what are they thinking? It is hard to reach the nodes in the pelvis I thought, that is a much deeper surgery. It does seem that melanoma has progressed into your lymph nodes ie they found one or more that were positive. the lymph nodes "catch" things as the fluid is filtered through and so this is a good thing, to remove the affected lymph nodes. The negative thing is our bodies still make lymph fluid and where is it going to go after the lymph nodes are removed? Your body has to reroute the lymph channels and the other lymph nodes not removed need to be kept clear so lymph fluid will drain and not back up into your leg and pelvis (therefore the need for lymphadema treatment by a skilled and trained physical therapist with lymphadema training). Lymphadema treatment can help you manage the swelling that can occur with lymph node removals. It can be long and tedious (I went three times a week, had the lymph massage and drainage, then the wrapping of my leg (my mummy leg) and this went on for 6 weeks. Uncomfortable?? Yes! Depressing? Yes! And then once the leg swelling is better you are measured for and fitted with a specially made $600 compression panty hose, with one leg missing…this actually helps quite a bit and I have grown accustomed to wearing it and my leg feels weird without it now. It is part of my life. LIFE being the key word here! I have had melanoma for 4.5 years and I am still living! I also did the 11 months if interferon shots. It carries a small percentage of delaying re-occurence. I took a year off from work, did the shots and really fatigue was the biggest side effect. I still "took care of" home, my teenage kids, cleaned, cooked, etc. I just slept alot. I would do it all again in a heartbeat. There are not a lot of options for us stage 3 ers out here. Good luck and whatever you decide for treatment, have no regrets, dont look back. make the best decision that fits you and your life.

      Vermont_Donna, stage 31, currently doing ipi

      ps I was able to get SSDI disability. Oh and I did get a wound infection, in fact several times and ended up in the hospital on IV antibiotics and a drain…not fun….but it is a risk of surgery, etc

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      LynnLuc
      Participant

      Since I had a thoracotomy I have been NED, My personal belief is that since melanoma sloughs off millions of cells aday I wanted it out of me. I am still NED and it has been over 8 months and currently in a Anti-PD- 1/vaccine trial ( 111 days in the trial now)

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      LynnLuc
      Participant

      Since I had a thoracotomy I have been NED, My personal belief is that since melanoma sloughs off millions of cells aday I wanted it out of me. I am still NED and it has been over 8 months and currently in a Anti-PD- 1/vaccine trial ( 111 days in the trial now)

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        2atlascedars
        Participant
        Hi Lynnluc,

        I had never heard that melanoma cell slough off millions of cells per day. Could you indicate the source of this fact, or do you recall where you heard this? It seems like a rather alarming fact, but let’s be sure it is true. It is vital that we on this board be tranferring fact-based information to each other and the world.

        Thank you

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        2atlascedars
        Participant
        Hi Lynnluc,

        I had never heard that melanoma cell slough off millions of cells per day. Could you indicate the source of this fact, or do you recall where you heard this? It seems like a rather alarming fact, but let’s be sure it is true. It is vital that we on this board be tranferring fact-based information to each other and the world.

        Thank you

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        LynnLuc
        Participant

        Hi I actually read it first in a book titled "The Melanoma Book"-Howard L. Kaufman, M.D., FACS and l I heard it again at the Melanoma Symposium sponsered by MRF at Moffitt -back in October I think it was and Dr Weber mentioned it again.

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        LynnLuc
        Participant

        Hi I actually read it first in a book titled "The Melanoma Book"-Howard L. Kaufman, M.D., FACS and l I heard it again at the Melanoma Symposium sponsered by MRF at Moffitt -back in October I think it was and Dr Weber mentioned it again.

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        LynnLuc
        Participant

        PS I found a little excerpt of the book at http://www.enotalone.com/article/6293.html

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        LynnLuc
        Participant

        PS I found a little excerpt of the book at http://www.enotalone.com/article/6293.html

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        LynnLuc
        Participant

        I went looking becausey ou are right- it does seem like a broad brush to paint – I thought about it and I think it would have to be a specific size rather than to generalize…I found this-perhaps this is where some of them got it from…http://www.sciencedaily.com/releases/2010/10/101007145501.htm

        How big is one gram in inches? "Metastasis is a complex process in which cancer cells detach from the primary tumor and migrate to other sites in the body by traveling through the lymphatic or blood circulatory systems. Researchers in the Foreman Foundation Melanoma Research Laboratory at Penn State developed a model to determine why the roughly one million tumor cells shed daily from a 1-gram melanoma tumor do not form more metastases in the lungs."

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        LynnLuc
        Participant

        I went looking becausey ou are right- it does seem like a broad brush to paint – I thought about it and I think it would have to be a specific size rather than to generalize…I found this-perhaps this is where some of them got it from…http://www.sciencedaily.com/releases/2010/10/101007145501.htm

        How big is one gram in inches? "Metastasis is a complex process in which cancer cells detach from the primary tumor and migrate to other sites in the body by traveling through the lymphatic or blood circulatory systems. Researchers in the Foreman Foundation Melanoma Research Laboratory at Penn State developed a model to determine why the roughly one million tumor cells shed daily from a 1-gram melanoma tumor do not form more metastases in the lungs."

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      King
      Participant

      Hi Ralph,

       

      I have a few comments to make after reading your post.  I, too, am a patient at Moffitt and have been going there since I advanced to Stage IV in 2005.  I had my groin lymph node dissection and 12 months of Interferon at a general cancer facility in 2004.

      I really thought Interferon had a bit higher success rate than 3-5%.  Are you sure about that?  I know it's not real high (I was thinking around 15%) but I thought it was better than that.  And, yes, I did 12 months of Interferon and still advanced to Stage IV ten weeks after completing the 12 months.

      The doctors at Moffitt are saying that your surgery was "incomplete".  Does that mean that you have confirmed melanoma remaining in some nodes?  If so, I don't think Interferon could even be considered at this time.  Interferon is FDA approved for Stage III NED (no evidence of disease).

      And I would want to know more details about "wound problems".  Are they talking about infections, a wound that won't heal, drainage issues????

      I had a fantastic surgeon at Moffitt (Dr. Timothy Yeatman…wouldn't be yours since he is a GI surgeon) who I believe is a big reason why I am alive today.  I have had 2 major surgeries performed by him.

      Big decisions!  However, from the bit that I know from reading your post, I would be asking more questions at Moffitt and probably continue my care there if you still have active disease.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Hi Ralph,

       

      I have a few comments to make after reading your post.  I, too, am a patient at Moffitt and have been going there since I advanced to Stage IV in 2005.  I had my groin lymph node dissection and 12 months of Interferon at a general cancer facility in 2004.

      I really thought Interferon had a bit higher success rate than 3-5%.  Are you sure about that?  I know it's not real high (I was thinking around 15%) but I thought it was better than that.  And, yes, I did 12 months of Interferon and still advanced to Stage IV ten weeks after completing the 12 months.

      The doctors at Moffitt are saying that your surgery was "incomplete".  Does that mean that you have confirmed melanoma remaining in some nodes?  If so, I don't think Interferon could even be considered at this time.  Interferon is FDA approved for Stage III NED (no evidence of disease).

      And I would want to know more details about "wound problems".  Are they talking about infections, a wound that won't heal, drainage issues????

      I had a fantastic surgeon at Moffitt (Dr. Timothy Yeatman…wouldn't be yours since he is a GI surgeon) who I believe is a big reason why I am alive today.  I have had 2 major surgeries performed by him.

      Big decisions!  However, from the bit that I know from reading your post, I would be asking more questions at Moffitt and probably continue my care there if you still have active disease.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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        filmer
        Participant

        Thanks for the comments King.

        To answer your questions…The 3-5% figure is what my surgeon and a medical Oncologist he works with have stated. I have not explored further. 

        As far as the "incomplete" surgery goes, no, there was no melanoma left in the area. I just had a negative PET scan…

        The wound problems the surgeon at Moffitt spoke of would include everything from infections, to backed up lymph fluid requiring periodic drainage and physical therapy, and even possible auto-immune diseases (colitis, etc.). This is what I have understood in any case.

        I am going  f5f to get an appointment at another hospital for a third opinion but am leaning towards the Moffitt option. I wish I could find a Dr. there that included nutrition geared for the disease in the plan. It seems none of the M.D.'s hold much stock in nourishing the body with clean food, etc.

        I thank you and the other people that have responded to my question for their interest and kind words.

        Best of luck to you 

        Ralph 

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        filmer
        Participant

        Thanks for the comments King.

        To answer your questions…The 3-5% figure is what my surgeon and a medical Oncologist he works with have stated. I have not explored further. 

        As far as the "incomplete" surgery goes, no, there was no melanoma left in the area. I just had a negative PET scan…

        The wound problems the surgeon at Moffitt spoke of would include everything from infections, to backed up lymph fluid requiring periodic drainage and physical therapy, and even possible auto-immune diseases (colitis, etc.). This is what I have understood in any case.

        I am going  f5f to get an appointment at another hospital for a third opinion but am leaning towards the Moffitt option. I wish I could find a Dr. there that included nutrition geared for the disease in the plan. It seems none of the M.D.'s hold much stock in nourishing the body with clean food, etc.

        I thank you and the other people that have responded to my question for their interest and kind words.

        Best of luck to you 

        Ralph 

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        King
        Participant

        Ralph,

         

        I think you are wise to get an opinion at a third facility.  I hope it is a major melanoma center.  There are cancer centers and there are melanoma centers!  You are doing lots of research which is very important to make a decision that you feel comfortable with.

         

        I have met with a dietitian at Moffitt a couple of times since I have trouble maintaining my weight since my surgeries.

         

        Keep us posted.  Best of luck to you.

         

        Stay Strong
        King

        Stage IV 7/05 Liver mets

         

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        King
        Participant

        Ralph,

         

        I think you are wise to get an opinion at a third facility.  I hope it is a major melanoma center.  There are cancer centers and there are melanoma centers!  You are doing lots of research which is very important to make a decision that you feel comfortable with.

         

        I have met with a dietitian at Moffitt a couple of times since I have trouble maintaining my weight since my surgeries.

         

        Keep us posted.  Best of luck to you.

         

        Stay Strong
        King

        Stage IV 7/05 Liver mets

         

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        filmer
        Participant

        King- thanks for the vote of confidence..I guess. I am wondering about what you mean by Melanoma hospitals. Do we consider Moffitt a Melanoma hospital, or are you referring to hospitals that deal only with melanoma?

        I have several friends filtering internet research for me and there are some really amazing stories, testamonials, and convincing programs out there. How many of these do you suspect are sales pitches, wishful thinking, or straight hogwash?

        I am really looking for a team that incorporates medicine and nutrition. Someone that sees the value of combining the successes of the traditional & alternative . I hope I find a group I can have confidence in before long…

        Hang in there King. Sounds like you are a tough and  determined man.

        Thanks for your thoughts

        Ralph

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        filmer
        Participant

        King- thanks for the vote of confidence..I guess. I am wondering about what you mean by Melanoma hospitals. Do we consider Moffitt a Melanoma hospital, or are you referring to hospitals that deal only with melanoma?

        I have several friends filtering internet research for me and there are some really amazing stories, testamonials, and convincing programs out there. How many of these do you suspect are sales pitches, wishful thinking, or straight hogwash?

        I am really looking for a team that incorporates medicine and nutrition. Someone that sees the value of combining the successes of the traditional & alternative . I hope I find a group I can have confidence in before long…

        Hang in there King. Sounds like you are a tough and  determined man.

        Thanks for your thoughts

        Ralph

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      Charlie S
      Participant

      I am also a 20 year old with 40 years of experience…………….24 of them with melanoma.

      Seems to me, from what you report, this is a question of  surgical margins.

      So, I would want the actual original  surgical report with an explanation of the margins.  IF that report shows margins were not ahceived, I would do more surgery, but not until I had an explanation from the original surgeon of why those margrins were not met.

      I would want a full Surgical explanation from Moffit why further surgery is required as well as a defence from the original surgeon before proceeding.

      As a side note, keep those drains in as long as you can so you don't end up with elephant leg.

      Get a third opinion if you need too, because your current doc is calling foul on your previous one and you may need yet another look to settle the mindset to your advantage.

       

      Cheers.

      Charlie S

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      Charlie S
      Participant

      I am also a 20 year old with 40 years of experience…………….24 of them with melanoma.

      Seems to me, from what you report, this is a question of  surgical margins.

      So, I would want the actual original  surgical report with an explanation of the margins.  IF that report shows margins were not ahceived, I would do more surgery, but not until I had an explanation from the original surgeon of why those margrins were not met.

      I would want a full Surgical explanation from Moffit why further surgery is required as well as a defence from the original surgeon before proceeding.

      As a side note, keep those drains in as long as you can so you don't end up with elephant leg.

      Get a third opinion if you need too, because your current doc is calling foul on your previous one and you may need yet another look to settle the mindset to your advantage.

       

      Cheers.

      Charlie S

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        filmer
        Participant

        Wow…You are experienced Charlie. I still can't beleive I'm 60! Your advice seems very sound and your comment re: drains is well taken. This was not really explained well by anyone I have seen. Just – "You could experience wound problems and fluid could build up in the surgical area".

        I will also take your advice and demand more thorough explanations. 

        I am seeing another group at Sylvester Cancer Center in Miami, but am also working on traveling to New York and D.C. to see someone at Sloan- Kettering before I embark on anything. i hope I will find someone I am confident in soon.

        Thanks for your commentary . 

        Take care and best of luck to you

        Ralph

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        filmer
        Participant

        Wow…You are experienced Charlie. I still can't beleive I'm 60! Your advice seems very sound and your comment re: drains is well taken. This was not really explained well by anyone I have seen. Just – "You could experience wound problems and fluid could build up in the surgical area".

        I will also take your advice and demand more thorough explanations. 

        I am seeing another group at Sylvester Cancer Center in Miami, but am also working on traveling to New York and D.C. to see someone at Sloan- Kettering before I embark on anything. i hope I will find someone I am confident in soon.

        Thanks for your commentary . 

        Take care and best of luck to you

        Ralph

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        filmer
        Participant

        Wow…You are experienced Charlie. I still can't beleive I'm 60! Your advice seems very sound and your comment re: drains is well taken. This was not really explained well by anyone I have seen. Just – "You could experience wound problems and fluid could build up in the surgical area".

        I will also take your advice and demand more thorough explanations. 

        I am seeing another group at Sylvester Cancer Center in Miami, but am also working on traveling to New York and D.C. to see someone at Sloan- Kettering before I embark on anything. i hope I will find someone I am confident in soon.

        Thanks for your commentary . 

        Take care and best of luck to you

        Ralph

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        filmer
        Participant

        Wow…You are experienced Charlie. I still can't beleive I'm 60! Your advice seems very sound and your comment re: drains is well taken. This was not really explained well by anyone I have seen. Just – "You could experience wound problems and fluid could build up in the surgical area".

        I will also take your advice and demand more thorough explanations. 

        I am seeing another group at Sylvester Cancer Center in Miami, but am also working on traveling to New York and D.C. to see someone at Sloan- Kettering before I embark on anything. i hope I will find someone I am confident in soon.

        Thanks for your commentary . 

        Take care and best of luck to you

        Ralph

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