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Confused – Stage 4 Treatment Options

Forums General Melanoma Community Confused – Stage 4 Treatment Options

  • Post
    Erinmay22
    Participant

    March 1stI had melanoma confirmed in my lungs.  For the last 6 weeks I’ve been trying to get qualified for a B-RAF trial.  The good news is that I found out (thru a whole list of waiting and errors) that I am + for the mutation, but my April scan didn’t show enough “active measurable growth” to qualify for the trial.  Now I know I should be doing some sort of happy dance for that statement – but I guess my guard is still up!   

    March 1stI had melanoma confirmed in my lungs.  For the last 6 weeks I’ve been trying to get qualified for a B-RAF trial.  The good news is that I found out (thru a whole list of waiting and errors) that I am + for the mutation, but my April scan didn’t show enough “active measurable growth” to qualify for the trial.  Now I know I should be doing some sort of happy dance for that statement – but I guess my guard is still up!   

    So now I am back at square 1 (again…) What do I do for treatment?  My doctor even suggested maybe watching and waiting since it appears that most of my lungs spots have just disappeared?  Were the rest of them maybe an infection and the 2 out of the 12 they biopsy just happen to be melanoma?  Or is it that my body is fighting it?  It’s so confusing… and now I sit and wait again.  Perhaps they will try Ipi/Yervoy?  I don’t see my doctor for a few weeks.  My scan results are listed below as information 

    4.19.11 Scan: Lungs – Status post left upper lobe and left lower lobe wedge resections of pulmonary nodules, biopsy-proven to represent metastatic melanoma.  There has been interval resolution of all additional subcentimeter pulmonary nodules, with the exception of a 3 mm right basilar lesion, and a subcentimeter right basilar granuloma.   

    Everything else was listed as stable from my previous scan with the exception of new small bilateral adnexal cysts and stated no new evidence of metastatic disease. 

    1.13.11 Scan: Lungs – all stable scattered subcentimeter pulmonary nodules are identified most of which measure 0.2 to 0.3 cm.  The largest seen posteriorly at the right base measuring 0.4 cm.  Calcified granuloma right base lung.  Impression states: multiple bilobar scattered subcentimeter pulmonary nodules.  Although there is evidence of prior granulomatous disease within the thorax and some of the lung nodules may be related to this process, the multiplicity (my doctor stated there were over a dozen spots!) of nodules raises concern for metastasis.   

     

    Thanks,

    Erin

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  • Replies
      lhaley
      Participant

      Erin,

      It sounds like it is good news that your body is fighting this, but I do understand your concern.  Trials want 1cm of measurable disease.  When I had my bladder tumor I wasn't eligible because they couldn't be seen on a scan that could measure. The Dr. saw them visually during a cystoscopy!  Sometimes the rules are so strange……

      How long is the Dr. putting between your scans to keep a check?  Not sure if they will put you on Yervoy with that small of nodules.   

      My last scans were similar to yours but nothing has been biopsied. Scans in 2 weeks. Hopefully still stable.

      Linda

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      lhaley
      Participant

      Erin,

      It sounds like it is good news that your body is fighting this, but I do understand your concern.  Trials want 1cm of measurable disease.  When I had my bladder tumor I wasn't eligible because they couldn't be seen on a scan that could measure. The Dr. saw them visually during a cystoscopy!  Sometimes the rules are so strange……

      How long is the Dr. putting between your scans to keep a check?  Not sure if they will put you on Yervoy with that small of nodules.   

      My last scans were similar to yours but nothing has been biopsied. Scans in 2 weeks. Hopefully still stable.

      Linda

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      washoegal
      Participant

      At this point I'd almost be afraid to try anything that might suppress your own immune system since it has apparently kicked in quite well.  On the other hand I understand you worry, my heart goes out to you.  Really about the only logical thing I could see is getting you scans scheduled as frequently as possibly.  You might consider finding an excellent acupuncturist to help boost your immune system even more.   And whatever else you have been doing…KEEP DOING It, it's been working.

      Good Luck,

      Mary

      Stage 3

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        Erinmay22
        Participant
        Linda – good luck with your scans! This whole thing leaves me in a constant state of anxiety :). And yes I don’t think the doctors know what to do with me! They found these spots when I still thought I was stage 3b trying to qualify for the ipi trial. I am already nervous what the next set will be like! Ha!

        Mary – yeah something is going on! I’ve always been pretty healthy… Except for this whole melanoma thing! Makes it hard to concentrate at my new job thru all this! But yes I was going to try acupuncture. Thought it might be good for my sore back too :).

        So stay tuned! I will find out more in a few weeks!
        Erin

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        Erinmay22
        Participant
        Linda – good luck with your scans! This whole thing leaves me in a constant state of anxiety :). And yes I don’t think the doctors know what to do with me! They found these spots when I still thought I was stage 3b trying to qualify for the ipi trial. I am already nervous what the next set will be like! Ha!

        Mary – yeah something is going on! I’ve always been pretty healthy… Except for this whole melanoma thing! Makes it hard to concentrate at my new job thru all this! But yes I was going to try acupuncture. Thought it might be good for my sore back too :).

        So stay tuned! I will find out more in a few weeks!
        Erin

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      washoegal
      Participant

      At this point I'd almost be afraid to try anything that might suppress your own immune system since it has apparently kicked in quite well.  On the other hand I understand you worry, my heart goes out to you.  Really about the only logical thing I could see is getting you scans scheduled as frequently as possibly.  You might consider finding an excellent acupuncturist to help boost your immune system even more.   And whatever else you have been doing…KEEP DOING It, it's been working.

      Good Luck,

      Mary

      Stage 3

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      FormerCaregiver
      Participant

      Definitely sounds like your immune system is working better than expected. In some very rare
      cases a person's immune system alone has been able to keep melanoma stable for a long time.
      It is interesting to note that there are a very small no. of documented cases where lesions
      have disappeared completely.

      Here is a link to the abstract:
      http://journals.lww.com/melanomaresearch/pages/articleviewer.aspx?year=2008&issue=08000&article=00007&type=abstract
      The abstract states that: "… incidence of spontaneous regression of metastases from
      malignant melanoma is approximately one per 400 patients, and possible mechanisms include
      immunologic, endocrine, inflammatory and tumour nutritional factors."

      I think that your doctor is waiting to see what the next lot of scans will show because it is
      not impossible for some spots to disappear. Have you had a PET scan yet?

      Hope this helps.

      Frank from Australia

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        Erinmay22
        Participant

        Hi Frank –

        Thanks for the note back.  Yeah, I suppose maybe my immune system is fighting it.  I just know how tricky and sneaky this whole melanoma thing can be!  I was freaking out for months that this stuff was just growing like wild in me since Jan showed a dozen + spots on my lungs.  Then April scans come around shocker – things look better!

        I understand my doctor wanting to just watch and wait.  and I'm somewhat ok with that.  I've never been one to react well to prescriptions and medicine.  So we'll see.  I guess when I see him in a few weeks we'll discuss the approach.  On one hand though I feel if my body is fighting it maybe that's why I'm so tired all the time :)  Or maybe it's from anxiety and my crazy work schedule :)  haha! 

        My last PET was done in November.  Sloan where I go tends to like to do the CT scans.  They think they get better pictures and if things show up suspicous then they'll send you in for a PET.   They didn't even try a PET when the Jan scan showed so many spots.  Immediately they decided to just biopsy the spots – which was a lovely procedure!  I think I'm still trying to get my energy level back up from that!

        So stay tuned.  and thanks for the responses!

        Erin

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        Erinmay22
        Participant

        Hi Frank –

        Thanks for the note back.  Yeah, I suppose maybe my immune system is fighting it.  I just know how tricky and sneaky this whole melanoma thing can be!  I was freaking out for months that this stuff was just growing like wild in me since Jan showed a dozen + spots on my lungs.  Then April scans come around shocker – things look better!

        I understand my doctor wanting to just watch and wait.  and I'm somewhat ok with that.  I've never been one to react well to prescriptions and medicine.  So we'll see.  I guess when I see him in a few weeks we'll discuss the approach.  On one hand though I feel if my body is fighting it maybe that's why I'm so tired all the time :)  Or maybe it's from anxiety and my crazy work schedule :)  haha! 

        My last PET was done in November.  Sloan where I go tends to like to do the CT scans.  They think they get better pictures and if things show up suspicous then they'll send you in for a PET.   They didn't even try a PET when the Jan scan showed so many spots.  Immediately they decided to just biopsy the spots – which was a lovely procedure!  I think I'm still trying to get my energy level back up from that!

        So stay tuned.  and thanks for the responses!

        Erin

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        Gene_S
        Participant

        Erin,

        Part of the "watch and wait" has to do with the amount of radiation that each scan produces into your body.

        CT scans are used because they can put a ruler on the picture and measure the tumor size and compare it to a previous scan (picture) and see if it is progressing or regressing.  A pet scan shows "hot spots" where cancer may be located, however I'm pretty sure that  they can't be measured. A MRI is best as far as radiation is concerned. The high cost of scans is another factor that they consider.

        Best wishes,

        Gene

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        Gene_S
        Participant

        Erin,

        Part of the "watch and wait" has to do with the amount of radiation that each scan produces into your body.

        CT scans are used because they can put a ruler on the picture and measure the tumor size and compare it to a previous scan (picture) and see if it is progressing or regressing.  A pet scan shows "hot spots" where cancer may be located, however I'm pretty sure that  they can't be measured. A MRI is best as far as radiation is concerned. The high cost of scans is another factor that they consider.

        Best wishes,

        Gene

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      FormerCaregiver
      Participant

      Definitely sounds like your immune system is working better than expected. In some very rare
      cases a person's immune system alone has been able to keep melanoma stable for a long time.
      It is interesting to note that there are a very small no. of documented cases where lesions
      have disappeared completely.

      Here is a link to the abstract:
      http://journals.lww.com/melanomaresearch/pages/articleviewer.aspx?year=2008&issue=08000&article=00007&type=abstract
      The abstract states that: "… incidence of spontaneous regression of metastases from
      malignant melanoma is approximately one per 400 patients, and possible mechanisms include
      immunologic, endocrine, inflammatory and tumour nutritional factors."

      I think that your doctor is waiting to see what the next lot of scans will show because it is
      not impossible for some spots to disappear. Have you had a PET scan yet?

      Hope this helps.

      Frank from Australia

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      MichaelFL
      Participant

      Interesting. It seems it could be any one of what you stated:

      Were the rest of them maybe an infection and the 2 out of the 12 they biopsy just happen to be melanoma?  Or is it that my body is fighting it? 

      I am sure you also know that the lungs are tricky when it comes to scans. False positives are common.

      Can you ask for another CT scan in say-a month?

      From one study: http://medicalskeptic.wordpress.com/2010/04/22/false-positives-in-ct-lung-scans/

      National Cancer Institute finds that 21 to 33 percent of the suspicious lung nodules found by CT scans are false alarms. They’re not really cancer.

      Also from another study: http://radiographics.rsna.org/content/28/3/623.full

      Discordant interpretations of computed tomographic (CT) scans are common and have been reported in 31%–37% of cases. Major discrepancies have been reported in up to 17% of cases , resulting in a change in radiologic staging in 19% .

      Michael

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      MichaelFL
      Participant

      Interesting. It seems it could be any one of what you stated:

      Were the rest of them maybe an infection and the 2 out of the 12 they biopsy just happen to be melanoma?  Or is it that my body is fighting it? 

      I am sure you also know that the lungs are tricky when it comes to scans. False positives are common.

      Can you ask for another CT scan in say-a month?

      From one study: http://medicalskeptic.wordpress.com/2010/04/22/false-positives-in-ct-lung-scans/

      National Cancer Institute finds that 21 to 33 percent of the suspicious lung nodules found by CT scans are false alarms. They’re not really cancer.

      Also from another study: http://radiographics.rsna.org/content/28/3/623.full

      Discordant interpretations of computed tomographic (CT) scans are common and have been reported in 31%–37% of cases. Major discrepancies have been reported in up to 17% of cases , resulting in a change in radiologic staging in 19% .

      Michael

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Erin,

      Not easy decisions, I know.  Regardless of what the other spots were that disappeared, they did find mel in there.  For me,  I seemed to have had a great immune system from the start that was keeping it at bay – very slow growing in lungs.  I did a couple of months of watch and wait to see if they continued to grow…they did, just very, very slowly.  Eventually  I  chose to go the path of trying to push my immune system a bit more in my favor by  using immunotherapies, rather than BIO/CHEMO. First IL-2 – since Ipi wasn't an option for me at that time.  Got a partial response – stable for about 6 months. Then an adoptive cell transfer trial (good response – reduction), then  followed quickly by MDX (ipi)-010 Compassionate Use Trial when it opened up (home run – massive reduction!).  I'm now 5.5+ yrs out from my Stage IV dx with the past 2+ years of no disease since my last dose of ipi in Feb 2009.  Keep doing what you're doing –  gathering opinions and then present the options for discussion with your Onc. 

      Hang in there!
      Rocco – Stage IV

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Erin,

      Not easy decisions, I know.  Regardless of what the other spots were that disappeared, they did find mel in there.  For me,  I seemed to have had a great immune system from the start that was keeping it at bay – very slow growing in lungs.  I did a couple of months of watch and wait to see if they continued to grow…they did, just very, very slowly.  Eventually  I  chose to go the path of trying to push my immune system a bit more in my favor by  using immunotherapies, rather than BIO/CHEMO. First IL-2 – since Ipi wasn't an option for me at that time.  Got a partial response – stable for about 6 months. Then an adoptive cell transfer trial (good response – reduction), then  followed quickly by MDX (ipi)-010 Compassionate Use Trial when it opened up (home run – massive reduction!).  I'm now 5.5+ yrs out from my Stage IV dx with the past 2+ years of no disease since my last dose of ipi in Feb 2009.  Keep doing what you're doing –  gathering opinions and then present the options for discussion with your Onc. 

      Hang in there!
      Rocco – Stage IV

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      Kim K
      Participant

      If your immune system is working, what about trying IL-2.  It is rough but doable.  I am NED.  I had one lung met surgically removed, and the other muscle met dissappeared with 1 cycle of IL-2.

      My immune system has kept my disease at bay and smoldering.  I have also developed a lot of type IV allergic reactions ex. latex dermatitis, adhesive dermatitis, nickel dermatitis etc.  The type 4 response is what is stimulated for going after mel (grossly simplified) so I felt it might give me a chance.  It worked.  The recovery was fairly quick as well.  One month after I was 95% back to normal except for some remaining peeling skin on my feet.

      Just a suggestion, give your immune system something to go after.  IL-2 will unleash the dogs of your killer T-cells etc.

      Kim

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      Kim K
      Participant

      If your immune system is working, what about trying IL-2.  It is rough but doable.  I am NED.  I had one lung met surgically removed, and the other muscle met dissappeared with 1 cycle of IL-2.

      My immune system has kept my disease at bay and smoldering.  I have also developed a lot of type IV allergic reactions ex. latex dermatitis, adhesive dermatitis, nickel dermatitis etc.  The type 4 response is what is stimulated for going after mel (grossly simplified) so I felt it might give me a chance.  It worked.  The recovery was fairly quick as well.  One month after I was 95% back to normal except for some remaining peeling skin on my feet.

      Just a suggestion, give your immune system something to go after.  IL-2 will unleash the dogs of your killer T-cells etc.

      Kim

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