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New to forum and new melanoma patient

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  • Post
    • December 21, 2014 at 11:15 pm
    Tracey R62
    Participant

    I was dx with metastatic melanoma just a few weeks ago.  Subungual melanoma under my big toe and metastatic melanoma in 2 groin lymph nodes.  Going in for surgery jan 13th to remove the toe and all lymph nodes in my left groin.  I see so many confusing information regarding treatment.  

    Has anyone here or anyone know anyone who refused treatments and just continued to watch and scan?  Has anyone gone through a treatment that had minimal side effects?  And what are the abbreviation mean- N.E.D,  post WLE, TIL therapy?

    I need so positive and uplifting advice right now.  Thanks so much. 

    Tracey

     

Viewing 8 reply threads
  • Replies
      • December 21, 2014 at 11:26 pm
      Cooper
      Participant

      There was someone on MIF with same thing, think her name was Shirley and she is fine now, like 8 years out.  Just had the surgery.  You can search her by name there, melanomaforum.org

      She's be a good one for you to reach out to.

      • December 21, 2014 at 11:26 pm
      Cooper
      Participant

      There was someone on MIF with same thing, think her name was Shirley and she is fine now, like 8 years out.  Just had the surgery.  You can search her by name there, melanomaforum.org

      She's be a good one for you to reach out to.

      • December 21, 2014 at 11:26 pm
      Cooper
      Participant

      There was someone on MIF with same thing, think her name was Shirley and she is fine now, like 8 years out.  Just had the surgery.  You can search her by name there, melanomaforum.org

      She's be a good one for you to reach out to.

      • December 21, 2014 at 11:55 pm
      washoegal
      Participant

      Tracey, there are many of us Stage 3 patients thatare "wait and watch" or as your put it refused treatment and continued to watch and scan.  It all depends on where you are in the stage 3 classification.  I'm stage 3a, and in my case I believe that's a very resonable thing to do.  If you are stage 3c, you might want to look at other alternatives. 

       

      We use a lot of abbreviations (sorry about that!) and I know it makes it hard to read the posts.  Sometimes when you're first starting on this journey it helps to have two windows up so you can query terms as you read. 

      N.E.D. No Evedince of Disease

      WLE Wide Lateral Excission

      TIL Adoptive cell therapy using tumor-infiltrating lymphocytes (TIL)

      Mary

        • December 28, 2014 at 4:08 am
        Tracey R62
        Participant

        Thank you mary.  That helps quite a bit.  as for my stage, i am going to have to check again.  my husband has all the details.  all i heard was blah blah you have cancer, blah blah.  I completely zoned out after that.

        • December 28, 2014 at 4:08 am
        Tracey R62
        Participant

        Thank you mary.  That helps quite a bit.  as for my stage, i am going to have to check again.  my husband has all the details.  all i heard was blah blah you have cancer, blah blah.  I completely zoned out after that.

        • December 28, 2014 at 4:08 am
        Tracey R62
        Participant

        Thank you mary.  That helps quite a bit.  as for my stage, i am going to have to check again.  my husband has all the details.  all i heard was blah blah you have cancer, blah blah.  I completely zoned out after that.

      • December 21, 2014 at 11:55 pm
      washoegal
      Participant

      Tracey, there are many of us Stage 3 patients thatare "wait and watch" or as your put it refused treatment and continued to watch and scan.  It all depends on where you are in the stage 3 classification.  I'm stage 3a, and in my case I believe that's a very resonable thing to do.  If you are stage 3c, you might want to look at other alternatives. 

       

      We use a lot of abbreviations (sorry about that!) and I know it makes it hard to read the posts.  Sometimes when you're first starting on this journey it helps to have two windows up so you can query terms as you read. 

      N.E.D. No Evedince of Disease

      WLE Wide Lateral Excission

      TIL Adoptive cell therapy using tumor-infiltrating lymphocytes (TIL)

      Mary

      • December 21, 2014 at 11:55 pm
      washoegal
      Participant

      Tracey, there are many of us Stage 3 patients thatare "wait and watch" or as your put it refused treatment and continued to watch and scan.  It all depends on where you are in the stage 3 classification.  I'm stage 3a, and in my case I believe that's a very resonable thing to do.  If you are stage 3c, you might want to look at other alternatives. 

       

      We use a lot of abbreviations (sorry about that!) and I know it makes it hard to read the posts.  Sometimes when you're first starting on this journey it helps to have two windows up so you can query terms as you read. 

      N.E.D. No Evedince of Disease

      WLE Wide Lateral Excission

      TIL Adoptive cell therapy using tumor-infiltrating lymphocytes (TIL)

      Mary

      • December 22, 2014 at 1:49 am
      arthurjedi007
      Participant

      Removing a toe for melanoma. Wow. That's scary. I would hope you are seeing a melanoma specialist preferably at one of the big centers. If not you might want to do that for a second opinion as to what treatment would be best for you.

      As far as minimal side effects I would say Keytruda which is Merck's PD1 is way far the easiest treatment I've had and also the best results so far. The first 10 days were mild rough with fevers, grogginess and stuff but then suddenly on day 11 I was fine. After that just an occassional fever but usually doesn't get higher than 101. But everyone is different with these medicines.

      The tafinlar/mekenist pills were pretty much ok except for fevers of 103 without me even realizing I had a fever. Also a mild rash. Except for 3 days towards the end of taking them when I had major shakes, fevers, throwing up and stuff.

      Yervoy was pretty easy too for me but some people have severe permanent side affects. For me though just some mild stomach churning, mild rash and pretty much it.

      Now Zelboraf was horrible for me. It was my first medicine. Over 24 side effects but except for minor liver damage they all finally cleared up and even it's much better.

      Also radiation has been pretty easy 3 out of 4 times. The low dose to my middle spine was some stomach issues. The high dose to one mid vertebrae was easy. The high dose to a spot in my head and 2 spots in lower spine was really rough. It took all my strength, mild stomach issues. The low dose to my hip and lower leg was easy with minor stomach issue.

      Also Carole K went for non tradiational treatment and she's still here 20 plus or so years later. Now that we have PD1 and other stuff though I don't think I would recommend that as the only part of treatment but there wasn't much good back then.

      Good luck to you.

      Artie

        • December 22, 2014 at 2:24 am
        Janner
        Participant

        Many of the treatments Artie mentioned are only available for stage IV unless you are in a clinical trial.  Oh, and Carole K did have surgery for her brain mets.

        There are currently no good adjuvant treatments for stage III — which is what you appear to be at the moment.  Interferon is the only approved treatment, and it has many side effects with very little benefit (no survival benefit – do your research on this one).  Any other treatment at stage 3 would most like need a clinical trial. 

        It looks like the link I used to have for abbreviations is no longer on the site, but there is a glossary of terms:  https://www.melanoma.org/understand-melanoma/resource-library/glossary-terms

        • December 22, 2014 at 2:24 am
        Janner
        Participant

        Many of the treatments Artie mentioned are only available for stage IV unless you are in a clinical trial.  Oh, and Carole K did have surgery for her brain mets.

        There are currently no good adjuvant treatments for stage III — which is what you appear to be at the moment.  Interferon is the only approved treatment, and it has many side effects with very little benefit (no survival benefit – do your research on this one).  Any other treatment at stage 3 would most like need a clinical trial. 

        It looks like the link I used to have for abbreviations is no longer on the site, but there is a glossary of terms:  https://www.melanoma.org/understand-melanoma/resource-library/glossary-terms

        • December 22, 2014 at 5:40 am
        Marianne quinn
        Participant

        My husband had subungul melanoma under his thumbnail. His thumb was partially amputated. This is the normal treatment. Can't do a WLE of the nail bed. He is NED. If you read my posts, there is a lot more detail. If you are 3b or 3 c, you should look into a clinical trial. Good luck . 

        • December 22, 2014 at 5:40 am
        Marianne quinn
        Participant

        My husband had subungul melanoma under his thumbnail. His thumb was partially amputated. This is the normal treatment. Can't do a WLE of the nail bed. He is NED. If you read my posts, there is a lot more detail. If you are 3b or 3 c, you should look into a clinical trial. Good luck . 

        • December 28, 2014 at 4:12 am
        Tracey R62
        Participant

        Thank you so much marianne.  i guess by clicking on your name i can find your posts?

        • December 28, 2014 at 4:12 am
        Tracey R62
        Participant

        Thank you so much marianne.  i guess by clicking on your name i can find your posts?

        • December 28, 2014 at 4:12 am
        Tracey R62
        Participant

        Thank you so much marianne.  i guess by clicking on your name i can find your posts?

        • December 22, 2014 at 5:40 am
        Marianne quinn
        Participant

        My husband had subungul melanoma under his thumbnail. His thumb was partially amputated. This is the normal treatment. Can't do a WLE of the nail bed. He is NED. If you read my posts, there is a lot more detail. If you are 3b or 3 c, you should look into a clinical trial. Good luck . 

        • December 28, 2014 at 4:13 am
        Tracey R62
        Participant

        Thank you so much janner!

        • December 28, 2014 at 4:13 am
        Tracey R62
        Participant

        Thank you so much janner!

        • December 28, 2014 at 4:13 am
        Tracey R62
        Participant

        Thank you so much janner!

        • December 22, 2014 at 2:24 am
        Janner
        Participant

        Many of the treatments Artie mentioned are only available for stage IV unless you are in a clinical trial.  Oh, and Carole K did have surgery for her brain mets.

        There are currently no good adjuvant treatments for stage III — which is what you appear to be at the moment.  Interferon is the only approved treatment, and it has many side effects with very little benefit (no survival benefit – do your research on this one).  Any other treatment at stage 3 would most like need a clinical trial. 

        It looks like the link I used to have for abbreviations is no longer on the site, but there is a glossary of terms:  https://www.melanoma.org/understand-melanoma/resource-library/glossary-terms

        • December 28, 2014 at 4:11 am
        Tracey R62
        Participant

        Thank you artie.  I will be treated at md anderson in houston which i hear is one of the top cancer centers and i live in houston.  right now in boston at dana faber for second opinions on treatment options and foundation one in cambridge, ma is running some geonome dna testing on my pathology to determine a treatment.

        • December 28, 2014 at 4:11 am
        Tracey R62
        Participant

        Thank you artie.  I will be treated at md anderson in houston which i hear is one of the top cancer centers and i live in houston.  right now in boston at dana faber for second opinions on treatment options and foundation one in cambridge, ma is running some geonome dna testing on my pathology to determine a treatment.

        • December 28, 2014 at 4:11 am
        Tracey R62
        Participant

        Thank you artie.  I will be treated at md anderson in houston which i hear is one of the top cancer centers and i live in houston.  right now in boston at dana faber for second opinions on treatment options and foundation one in cambridge, ma is running some geonome dna testing on my pathology to determine a treatment.

      • December 22, 2014 at 1:49 am
      arthurjedi007
      Participant

      Removing a toe for melanoma. Wow. That's scary. I would hope you are seeing a melanoma specialist preferably at one of the big centers. If not you might want to do that for a second opinion as to what treatment would be best for you.

      As far as minimal side effects I would say Keytruda which is Merck's PD1 is way far the easiest treatment I've had and also the best results so far. The first 10 days were mild rough with fevers, grogginess and stuff but then suddenly on day 11 I was fine. After that just an occassional fever but usually doesn't get higher than 101. But everyone is different with these medicines.

      The tafinlar/mekenist pills were pretty much ok except for fevers of 103 without me even realizing I had a fever. Also a mild rash. Except for 3 days towards the end of taking them when I had major shakes, fevers, throwing up and stuff.

      Yervoy was pretty easy too for me but some people have severe permanent side affects. For me though just some mild stomach churning, mild rash and pretty much it.

      Now Zelboraf was horrible for me. It was my first medicine. Over 24 side effects but except for minor liver damage they all finally cleared up and even it's much better.

      Also radiation has been pretty easy 3 out of 4 times. The low dose to my middle spine was some stomach issues. The high dose to one mid vertebrae was easy. The high dose to a spot in my head and 2 spots in lower spine was really rough. It took all my strength, mild stomach issues. The low dose to my hip and lower leg was easy with minor stomach issue.

      Also Carole K went for non tradiational treatment and she's still here 20 plus or so years later. Now that we have PD1 and other stuff though I don't think I would recommend that as the only part of treatment but there wasn't much good back then.

      Good luck to you.

      Artie

      • December 22, 2014 at 1:49 am
      arthurjedi007
      Participant

      Removing a toe for melanoma. Wow. That's scary. I would hope you are seeing a melanoma specialist preferably at one of the big centers. If not you might want to do that for a second opinion as to what treatment would be best for you.

      As far as minimal side effects I would say Keytruda which is Merck's PD1 is way far the easiest treatment I've had and also the best results so far. The first 10 days were mild rough with fevers, grogginess and stuff but then suddenly on day 11 I was fine. After that just an occassional fever but usually doesn't get higher than 101. But everyone is different with these medicines.

      The tafinlar/mekenist pills were pretty much ok except for fevers of 103 without me even realizing I had a fever. Also a mild rash. Except for 3 days towards the end of taking them when I had major shakes, fevers, throwing up and stuff.

      Yervoy was pretty easy too for me but some people have severe permanent side affects. For me though just some mild stomach churning, mild rash and pretty much it.

      Now Zelboraf was horrible for me. It was my first medicine. Over 24 side effects but except for minor liver damage they all finally cleared up and even it's much better.

      Also radiation has been pretty easy 3 out of 4 times. The low dose to my middle spine was some stomach issues. The high dose to one mid vertebrae was easy. The high dose to a spot in my head and 2 spots in lower spine was really rough. It took all my strength, mild stomach issues. The low dose to my hip and lower leg was easy with minor stomach issue.

      Also Carole K went for non tradiational treatment and she's still here 20 plus or so years later. Now that we have PD1 and other stuff though I don't think I would recommend that as the only part of treatment but there wasn't much good back then.

      Good luck to you.

      Artie

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