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Stage III Treatment Options – HELP!

Forums General Melanoma Community Stage III Treatment Options – HELP!

  • Post
    ShariC
    Participant

    Hi Everybody – Thanks for being part of such a terrific resource!  I've been reading for a month, or so, and now am hoping to get some advice:  Here's my diagnosis and treatment history:

    – I was diagnosed in Mid-July 2010 with Stage IIIb Melanoma after I found a lump in my armpit (it was the enlarged lymph node).  After surgery – complete axillary dissection (22 nodes taken, 1 macromets, 1 micro), my pathology came back as T4aN2bM0 – Stage IIIb. 

    Hi Everybody – Thanks for being part of such a terrific resource!  I've been reading for a month, or so, and now am hoping to get some advice:  Here's my diagnosis and treatment history:

    – I was diagnosed in Mid-July 2010 with Stage IIIb Melanoma after I found a lump in my armpit (it was the enlarged lymph node).  After surgery – complete axillary dissection (22 nodes taken, 1 macromets, 1 micro), my pathology came back as T4aN2bM0 – Stage IIIb. 

    – I was told by the local oncologist that he would not recommend interferon and that I should monitor and wait.  I requested to be referred to a specialist.  I was referred to the Mayo Clinic.

    – Dr. McWilliams at the Mayo Clinic recommended Luekine (GM-CSF) – a year.  Two weeks on and two weeks off.  He also recommended local radiation treatments to the axillary region.  (I've completed this radiation treatment but haven't started the Luekine, yet.

    – Last week, I saw Dr. Rene Gonzales at the University of Colorado Cancer Center as a second opinion.  He recommended Bio-Chemotherapy.  A treatment that includes 5 days in the hospital receiving the following:  IL-2, Interferon, Dacarbanize (DTIC), Cisplatin, and Vinplastine. 

    Here's my line of questioning:  I understand that this is fairly aggressive treatment and is unusual for Stage III.  Has anybody gone through something like this?  Are any other major cancer centers providing this kind of treatment for Stage III resected Melanoma?  I like the idea that it could increase my chances for disease-free survival (don't we all!) – he says up to 75%.  But, is this unrealistic?  Also, would this mean that if it does progress to Stage IV that I wouldn't be able to do this treatment?  Hmmm? 

    Also…I know that I will just have to eventually (as my Doctor says) "settle on one doctor and trust the treatment path"…I just want to make sure I'm ON the right path! 

    Thanks for any and all advice!

    – Shari

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  • Replies
      Jim M.
      Participant

      Hi Shari,

       I also had the lump under the armpit, had an LND, radiation and was given the options of interferon, a trial with Ipilimumab, watch and wait or find a clinical trial elsewhere. I gathered 4 other opinions. Nonone recommended the Bio-chem. Most recommended Ipi. My opinion is Bio-chem at your stage is not very common. I really can't say how often it's recommended for stage 3B. I did Ipi with vaccines and now get follow-up scans. When in doubt I would get more than a second opinion. It's a huge decision and you want to be as informed as possible. I'm sure others will respond with more advice. I was treated with resected melanoma at Moffitt Cancer Center in Tampa.

       You are welcome to email Dr. Jeffrey Weber about what trials/options he has available. If he's in town and you email him early morning on a weekday he will probably respond to you that morning. His email is http://[email protected]

      Best of success,

       Jim M.

       Stage 3C

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      Jim M.
      Participant

      Hi Shari,

       I also had the lump under the armpit, had an LND, radiation and was given the options of interferon, a trial with Ipilimumab, watch and wait or find a clinical trial elsewhere. I gathered 4 other opinions. Nonone recommended the Bio-chem. Most recommended Ipi. My opinion is Bio-chem at your stage is not very common. I really can't say how often it's recommended for stage 3B. I did Ipi with vaccines and now get follow-up scans. When in doubt I would get more than a second opinion. It's a huge decision and you want to be as informed as possible. I'm sure others will respond with more advice. I was treated with resected melanoma at Moffitt Cancer Center in Tampa.

       You are welcome to email Dr. Jeffrey Weber about what trials/options he has available. If he's in town and you email him early morning on a weekday he will probably respond to you that morning. His email is http://[email protected]

      Best of success,

       Jim M.

       Stage 3C

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        LynnLuc
        Participant

        I agree! Get a secind opinion ASAP! As far as Dr Jeffrey Weber at Moffitt…my personal opinion is that he is the best! I e-mailed him late one Friday night…actually early Saturday Morning and he responded Saturday morning. I am Stage 4 NED and currently in a MDX1106 and peptides trial. Been NED now one week short of 7 months.

        .I was offered the leukine injections 14 days on and 14 days off at Mayo in Rochecter, MN but decided to look elsewhere… I am in North Dakota currently fly back and forth but we are  moving to Florida soon. 

        Wishing you great success in the treatment you decide!- Lynn

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        LynnLuc
        Participant

        I agree! Get a secind opinion ASAP! As far as Dr Jeffrey Weber at Moffitt…my personal opinion is that he is the best! I e-mailed him late one Friday night…actually early Saturday Morning and he responded Saturday morning. I am Stage 4 NED and currently in a MDX1106 and peptides trial. Been NED now one week short of 7 months.

        .I was offered the leukine injections 14 days on and 14 days off at Mayo in Rochecter, MN but decided to look elsewhere… I am in North Dakota currently fly back and forth but we are  moving to Florida soon. 

        Wishing you great success in the treatment you decide!- Lynn

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      makedoandmend
      Participant

      I just wanted to jump in and say hello because I am in a similar situation. I'm stage III but haven't had the complete groin disection yet (its scheduled).  I feel like there are a bunch of options out there but no clear path… l I know there are a few options (adjuvant ipi sounds promising) but I feel lost because there isn't a way to determine if its really working.  I hope you keep posting on here becuase you sound knowledgable and agressive.  I have an appt with sloan and another cancer center after my surgery in the beg of November.  I know everyone has a different story but maybe we can bounce ideas off each other. II didn't even know radiation was an option until I read bills response to my post and your  post.. am looking foward to  what the others on the board have to say about your post.

      pat on long island.

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      makedoandmend
      Participant

      I just wanted to jump in and say hello because I am in a similar situation. I'm stage III but haven't had the complete groin disection yet (its scheduled).  I feel like there are a bunch of options out there but no clear path… l I know there are a few options (adjuvant ipi sounds promising) but I feel lost because there isn't a way to determine if its really working.  I hope you keep posting on here becuase you sound knowledgable and agressive.  I have an appt with sloan and another cancer center after my surgery in the beg of November.  I know everyone has a different story but maybe we can bounce ideas off each other. II didn't even know radiation was an option until I read bills response to my post and your  post.. am looking foward to  what the others on the board have to say about your post.

      pat on long island.

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      Lori CO
      Participant

      Hi Shari,

      I had biochemo with Dr. Gonzalez in 2007 when I was Stage III (radical neck dissection w/40 nodes removed, 1 positive). My reasoning was that I was young and otherwise healthy and could withstand the side effects. It's a rough treatment. Unfortunately, I recurred two years after biochemo. Currently in the GSK MEK clinical trial at University and am doing well. Dr. Gonzalez is very good and University is a topnotch facility.  Feel free to write to me if you want more info.

      Good luck!

      Lori

      Stage IV

      Grand Junction, CO

       

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      Lori CO
      Participant

      Hi Shari,

      I had biochemo with Dr. Gonzalez in 2007 when I was Stage III (radical neck dissection w/40 nodes removed, 1 positive). My reasoning was that I was young and otherwise healthy and could withstand the side effects. It's a rough treatment. Unfortunately, I recurred two years after biochemo. Currently in the GSK MEK clinical trial at University and am doing well. Dr. Gonzalez is very good and University is a topnotch facility.  Feel free to write to me if you want more info.

      Good luck!

      Lori

      Stage IV

      Grand Junction, CO

       

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        killmel
        Participant

        Hi Lori,

        Glad to hear you are doing well. How long have you been of GSK MEK.?? What is the treatment? What side effects do you have on GSK MEK and what do you to treat the side effects?

        Thanks

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        Lori CO
        Participant

        I've been on GSK MEK for 8 months. The treatment is pretty easy. I fast 2 hours, take 2 pills, fast 2 more hours and I'm good for the day. The side effects are mild fatigue and a rash which is controlled with an antibiotic and prescription cream. You may also have diarrhea and nausea but that hasn't been a problem for me. The drug started working right away and some of my tumors have disappeared completely. You might also research the combo trials.

        Good luck!

        Lori

         

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        Lori CO
        Participant

        I've been on GSK MEK for 8 months. The treatment is pretty easy. I fast 2 hours, take 2 pills, fast 2 more hours and I'm good for the day. The side effects are mild fatigue and a rash which is controlled with an antibiotic and prescription cream. You may also have diarrhea and nausea but that hasn't been a problem for me. The drug started working right away and some of my tumors have disappeared completely. You might also research the combo trials.

        Good luck!

        Lori

         

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        killmel
        Participant

        Hi Lori,

        Glad to hear you are doing well. How long have you been of GSK MEK.?? What is the treatment? What side effects do you have on GSK MEK and what do you to treat the side effects?

        Thanks

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      Ann from Iowa
      Participant

      My husband is also Stage IIIB.  His melanoma recurred in his left axilla area in Oct. 2009 after 18 months being Stage IIA. His original melanoma was on left arm, nodular, 3.4 Breslow depth and Clark Level IV, mitosis 6-7mm. No treatment at this time except for SNB and wide excision.  SNB was negative. 

      The recurrance was a 5cm tumor with extranodal extension.  They removed 32 nodes with only the one showing melanoma.  He received radiation to the axilla and shoulder, 5 treatments and then began Leukine shots.  He is just finishing his 11th round of shots with no recurrance.  His oncologist said, he in good faith, could not recommend interferon as it is so toxic and only has a 5 per cent success rate.  He said many major cancer centers do not recommend it any more and one of them is the Mayo Clinic.  He will only do one year of the Leukine and then will just be monitered.  At this point we have no idea if the Leukine is really working or the cancer would not have recurred anyway but for now it has been a good choice.  The only side effects he has had are welts and itching at the injection site and that has been managed with allergy meds, and he has had some bone pain.  It really has been an easy treatment and so far is working.      His last PetScan was just two weeks ago and was clear.  Best of luck with your decision.   Ann

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      Ann from Iowa
      Participant

      My husband is also Stage IIIB.  His melanoma recurred in his left axilla area in Oct. 2009 after 18 months being Stage IIA. His original melanoma was on left arm, nodular, 3.4 Breslow depth and Clark Level IV, mitosis 6-7mm. No treatment at this time except for SNB and wide excision.  SNB was negative. 

      The recurrance was a 5cm tumor with extranodal extension.  They removed 32 nodes with only the one showing melanoma.  He received radiation to the axilla and shoulder, 5 treatments and then began Leukine shots.  He is just finishing his 11th round of shots with no recurrance.  His oncologist said, he in good faith, could not recommend interferon as it is so toxic and only has a 5 per cent success rate.  He said many major cancer centers do not recommend it any more and one of them is the Mayo Clinic.  He will only do one year of the Leukine and then will just be monitered.  At this point we have no idea if the Leukine is really working or the cancer would not have recurred anyway but for now it has been a good choice.  The only side effects he has had are welts and itching at the injection site and that has been managed with allergy meds, and he has had some bone pain.  It really has been an easy treatment and so far is working.      His last PetScan was just two weeks ago and was clear.  Best of luck with your decision.   Ann

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        ShariC
        Participant

        Hi Everybody – Well, yesterday I had my first PET scan after diagnosis (3 months) and it wasn't clean.  There was a small "uptake" in the area of my original axillary dissection.  Must have been some Mel left over in the soft tissues.  Geez, I thought I could get a few months … or years…  BUT..here I am, on the cusp of Stage IV.  I'll take whatever advice anybody has for this next stage.  I have faxed my records to MD Anderson.  Thanks for the Dr. Reference at Moffet – will followup. 

        Obviously, I'm not doing well and trying to stay calm.  Thanks for any advice you can continue to give. 

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        ShariC
        Participant

        Hi Everybody – Well, yesterday I had my first PET scan after diagnosis (3 months) and it wasn't clean.  There was a small "uptake" in the area of my original axillary dissection.  Must have been some Mel left over in the soft tissues.  Geez, I thought I could get a few months … or years…  BUT..here I am, on the cusp of Stage IV.  I'll take whatever advice anybody has for this next stage.  I have faxed my records to MD Anderson.  Thanks for the Dr. Reference at Moffet – will followup. 

        Obviously, I'm not doing well and trying to stay calm.  Thanks for any advice you can continue to give. 

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      KevinM
      Participant

      Hi Shari,

      I'm sorry to hear that you are going through this! I was also diagnosed with stage 3 mel after a LND of the axilla (glolfball sized lymph node) in March of 2006. I have no know primary.

      After a full LND, I had 3 rounds of bio-chemo in a clinical trial at Beth Israel in Boston. The treatment was harsh and very challenging….but…I am glad that I did it! I've had a coulple of scares but remain NED 4 plus years later! I missed about 4 months of work during the treatments but haven't missed a day of work since due to Mel.

      As far as your recent PET scan goes….don't panic just yet! PET scans can return false positives…I had one 4 years ago. Please check my patnet or email me with any other questions.

      Hang in there!!

      Kevin

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      KevinM
      Participant

      Hi Shari,

      I'm sorry to hear that you are going through this! I was also diagnosed with stage 3 mel after a LND of the axilla (glolfball sized lymph node) in March of 2006. I have no know primary.

      After a full LND, I had 3 rounds of bio-chemo in a clinical trial at Beth Israel in Boston. The treatment was harsh and very challenging….but…I am glad that I did it! I've had a coulple of scares but remain NED 4 plus years later! I missed about 4 months of work during the treatments but haven't missed a day of work since due to Mel.

      As far as your recent PET scan goes….don't panic just yet! PET scans can return false positives…I had one 4 years ago. Please check my patnet or email me with any other questions.

      Hang in there!!

      Kevin

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      glewis923
      Participant

      Dear Shari-   Considering your young age and child, I would do anything they would let me to hopefully prevent you from possibly becomming a stage IV.  

       

      If i had it to do over i would have done IL-2 and/or bio-chemo-   but i let the Drs. talk me out of it as "over-treating" myself.  I was 46 when 1st diagnosed,  now I just turned 48 and after Interferon for 1 yr. I still ended up with lung mets- 2 on both sides of my heart over 1cm.  Do what your guts tell you to do.

      Love ALL-  Shady-Grady.

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      glewis923
      Participant

      Dear Shari-   Considering your young age and child, I would do anything they would let me to hopefully prevent you from possibly becomming a stage IV.  

       

      If i had it to do over i would have done IL-2 and/or bio-chemo-   but i let the Drs. talk me out of it as "over-treating" myself.  I was 46 when 1st diagnosed,  now I just turned 48 and after Interferon for 1 yr. I still ended up with lung mets- 2 on both sides of my heart over 1cm.  Do what your guts tell you to do.

      Love ALL-  Shady-Grady.

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      RMcLegal
      Participant

      I underwent biochemo in 2003 at The University of Colorado Cancer Center, following a Stage IIIc diagnosis.  Rough stuff, but I'm still walking around healthy and in remission.  I've blogged about the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  Rich

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        ShariC
        Participant

        Thanks!  I posted a reply to your posting of the blog URL.  What a difference 6 months makes.  I've had radiation (to my lymph node area – a small tumor grew back despite this treatment) followed by 4 rounds of biochem.  I appreciate your input.  Good luck on a clean scan this March.  I'll be getting at PET in April, but my MRI is clean (I mean negative!, no brain!  ha!) – Shari

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        ShariC
        Participant

        Thanks!  I posted a reply to your posting of the blog URL.  What a difference 6 months makes.  I've had radiation (to my lymph node area – a small tumor grew back despite this treatment) followed by 4 rounds of biochem.  I appreciate your input.  Good luck on a clean scan this March.  I'll be getting at PET in April, but my MRI is clean (I mean negative!, no brain!  ha!) – Shari

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      RMcLegal
      Participant

      I underwent biochemo in 2003 at The University of Colorado Cancer Center, following a Stage IIIc diagnosis.  Rough stuff, but I'm still walking around healthy and in remission.  I've blogged about the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  Rich

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      RMcLegal
      Participant

      I underwent biochemo in 2003 at The University of Colorado Cancer Center, following a Stage IIIc diagnosis.  Rough stuff, but I'm still walking around healthy and in remission.  I've blogged about the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  Rich

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      RMcLegal
      Participant

      I underwent biochemo in 2003 at The University of Colorado Cancer Center, following a Stage IIIc diagnosis.  Rough stuff, but I'm still walking around healthy and in remission.  I've blogged about the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes to you.  Rich

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