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Tafinlar-Mekinist Combo and My Story

Forums Cutaneous Melanoma Community Tafinlar-Mekinist Combo and My Story

  • Post
    Mat
    Participant

    Hi Everyone,

    First, I want to express my gratitude and appreciation for the folks who post to this bulletin board.  I've learned so much in a short period of time from your posts.  As you know, as is often the case in life–but especially with melanoma–ignorance is not bliss.  As a result of your posts, I've felt more comfortable discussing treatment options, etc. with my doctors, family and friends.  Thank you.

    Hi Everyone,

    First, I want to express my gratitude and appreciation for the folks who post to this bulletin board.  I've learned so much in a short period of time from your posts.  As you know, as is often the case in life–but especially with melanoma–ignorance is not bliss.  As a result of your posts, I've felt more comfortable discussing treatment options, etc. with my doctors, family and friends.  Thank you.

    As for my story, in 2003, I was 29 years old.  I had a small mole on the far right side of my chest near the right arm socket.  For the past year (probably more), it was taking on an odd shape, discoloration.  In hindsight, with the benefit of Google pictures, etc., a clear case of melanoma.  After much nagging over a period of many months (maybe more) from my parents and then girlfriend (now wife), I had the mole removed in a dermatologist's office.  (One of the reasons I had delayed (aside from youthful foolishness) is that a general practitioner had looked at the mole and said it looked "fine"–a lesson that this is not an area for general practitioners (no offense to any readers).)  A few days later, I received "the call".  The dermatologist referred me to one of the top melanoma specialists in my city (Philadelphia).  I proceeded to have a wide incision, sentinel lymph node testing, PET scan.  All were clear.  My melanoma was considered "thin" at .50mm, level 2.

    For the next 9 years, I continued to see my oncologist.  The appointments were every 6 months until 2011 when I was switched to annual appointments.  I was scanned for 3 years and then we switched to chest X-rays (all of course with blood work).  The running joke with my oncologist was that I was just there to pay him my co-pay and say hello.  Melanoma was a distant memory.  I was very foolish by not being more vigilant with the mole, but I got lucky and had dodged a bullet . . . or so I had thought.

    Of course, 2013 would turn out to be quite different.  I went to my routine annual appointment at the end of June with essentially only one symptom–around April, I started to develop what I thought was an under the skin-cyst on the top of my right shoulder.  My wife was 8 mos. pregnant.  We were busy.  I'm not sure that melanoma even crossed my mind.  I went to my primary care physician (different from the one mentioned above, but the same lesson still applies)–he thought it was a cyst from an in-grown hair.  However, it was on my "shoulder-bag" shoulder and was bothering me, so I went to the dermatologist–she thought it was a lipoma (a harmless fatty mass).  Even my oncologist thought it was a cyst or lipoma.  (Of course, the "cyst" would turn out to be melanoma–more on that below.)  Aside from the "cyst", two new developments at my oncologist appointment–for the first time in 10 years, I had an elevated LDH level (330) and a "spot" in my lungs on my chest X-ray.  My oncologist told me that it was "almost statistically impossible" for this to be a recurrence of melanoma.  We re-did the bloodwork to confirm–LDH level still elevated.  We did a CT scan–total disaster.  Stage IV metastasized melanoma all over the place–liver, abdomen, lungs, bone lesions, more.  

    Before I move on, let me pause.  The reason I'm including this level of detail is not because I'm looking for sympathy.  I know that some readers who visit this board are Stage I, consider themselves lucky, etc.  Well, that was me (except I didn't bother visiting the board)!  You cannot be too vigilant about this disease.  In hindsight, I'm not sure what I could have done differently (aside from getting the mole removed earlier)–insisted on a periodic CT scan whether or not covered by insurance?  I don't know.  I recognize that my situation is somewhat unique in that the vast majority of Stage I patients who are clear for 10 years remain so–but there is a statistically significant portion of those folks who have a recurrence.  Be vigilant–and see the "top" melanoma specialist (not "one of the top") in your area.

    Back to my story, which resumes on July 10th.  My oncologist's "plan A" was to have me screened by the NIH for one of their protocols.  I researched the TIL treatment online (thank you Bob Heffernan for your posts and your book (a great read which is available on Amazon!)).  I liked the plan, though I did switch my care over to Dr. Lynn Schuchter at UPenn (the "top" melanoma specialist in the Philadelphia-area).  Of course, it took a few weeks to get through the NIH's process.  I received "the call"–I was eligible, subject to being re-scanned at NIH.  The re-scans were a total disaster–significant tumor progression, particularly in my liver.  One small brain met.  I probably couldn't live long enough to go through the TIL process (which takes a number of weeks).  Whereas just a week or so prior, I was reviewing the "menu" of options (ipi/PD-1 trials, etc.), I now had almost none.  Fortunately, UPenn had tested me for the BRAF mutation and I tested positive for BRAF-V600E.  All of the doctors (UPenn and NIH) agreed that I needed to move immediately to a BRAF inhibitor.  (I should also mentioned that within this time frame my blood was re-tested–LDH now at 600 and most liver functions were elevated.)

    Dr. Schuchter prescribed the Tafinlar-Mekinist combo (and my insurance company cooperated!).  Last Friday evening–just 8 days ago–I started on the combo.  Within 2 days, the tumor on my shoulder started to decrease in size.  By the end of the week, it was a small fraction of the size it was just a week ago.  My only other surface-level tumor–a small nodule on my left arm–totally disappeared.  Recently, I had developed liver pain/sensation.  Throughout the week, this seemed to be improving–by the end of the week, I was certain that it was improving (easier to move around in bed, pull on a heavy door, etc.).  By the end of the week, I also "felt better", had more energy, was able to work a full day without fatigue, etc.  Yesterday–just 7 days after starting treatment–I had my blood re-tested.  All liver functions are essentially normal, with LDH being only slightly elevated at 240.  In my case, so far, these are miracle drugs.  I recognize that the treatment is a "bridge treatment" and will not last, but I need a "reset" badly–and these drugs appear to be providing one.  Of course, I won't know for certain until I'm re-scanned in a few weeks.

    As for side effects, I'm early in the cycle, but so far, I'm only getting joint pain (particularly in the hips).  However, this is totally manageable and a small price to pay.  For any Stage IV patient reading this–if you are BRAF-V600E positive and your tumor progression is such that other options aren't presently available, this combo seems to be a great option.  Thank you Dr. Schuchter (and her entire staff), thank you GlaxoSmithKline for developing these drugs, and thank you to all of the melanoma patients who participated in the trials for these drugs!

    Please feel free to ask questions and I will do my best to respond promptly.

    Very truly yours,

    Mat

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  • Replies
      POW
      Participant

      Mat, thank you for a very well-written and informative post. I hope that you cut-and-paste some of this into an MPIP profile so we can help you better in the future.

      First I want to say that I don't see anything you could have/should have done differently. Just about everybody has moles; most of us have "funny-looking" moles. Few people who have no personal or family history of melanoma would go running to a melanoma specialist at the first sign of a funny-looking mole because the chances of it being melanoma would be very, very low. So please don't blame yourself for that. And after your initial diagnosis you did remain vigilant and take all the right steps. I applaud you for that. You can blame your current stage IV on God or fate or bad luck, but please don't blame yourself. You did good!

      I think you have also done an excellent job of educating yourself about melanoma and its treatment. You appear to be on top of things and to be getting the best medical care available. You have every reason to be optimistic. Good for you!

      I am delighted that the BRAF/MEK combo is working so well for you. I'm also delighted that your insurance company is paying for it– we have GOT to get the combo FDA approved ASAP– it's very effective for a lot of patients. Thank you for sharing your story. You are giving a lot of melanoma patients reason to hope. And please do keep us updated about how things go with you and what type of follow-up treatment you choose. I will pray for your continued success.  

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      POW
      Participant

      Mat, thank you for a very well-written and informative post. I hope that you cut-and-paste some of this into an MPIP profile so we can help you better in the future.

      First I want to say that I don't see anything you could have/should have done differently. Just about everybody has moles; most of us have "funny-looking" moles. Few people who have no personal or family history of melanoma would go running to a melanoma specialist at the first sign of a funny-looking mole because the chances of it being melanoma would be very, very low. So please don't blame yourself for that. And after your initial diagnosis you did remain vigilant and take all the right steps. I applaud you for that. You can blame your current stage IV on God or fate or bad luck, but please don't blame yourself. You did good!

      I think you have also done an excellent job of educating yourself about melanoma and its treatment. You appear to be on top of things and to be getting the best medical care available. You have every reason to be optimistic. Good for you!

      I am delighted that the BRAF/MEK combo is working so well for you. I'm also delighted that your insurance company is paying for it– we have GOT to get the combo FDA approved ASAP– it's very effective for a lot of patients. Thank you for sharing your story. You are giving a lot of melanoma patients reason to hope. And please do keep us updated about how things go with you and what type of follow-up treatment you choose. I will pray for your continued success.  

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      POW
      Participant

      Mat, thank you for a very well-written and informative post. I hope that you cut-and-paste some of this into an MPIP profile so we can help you better in the future.

      First I want to say that I don't see anything you could have/should have done differently. Just about everybody has moles; most of us have "funny-looking" moles. Few people who have no personal or family history of melanoma would go running to a melanoma specialist at the first sign of a funny-looking mole because the chances of it being melanoma would be very, very low. So please don't blame yourself for that. And after your initial diagnosis you did remain vigilant and take all the right steps. I applaud you for that. You can blame your current stage IV on God or fate or bad luck, but please don't blame yourself. You did good!

      I think you have also done an excellent job of educating yourself about melanoma and its treatment. You appear to be on top of things and to be getting the best medical care available. You have every reason to be optimistic. Good for you!

      I am delighted that the BRAF/MEK combo is working so well for you. I'm also delighted that your insurance company is paying for it– we have GOT to get the combo FDA approved ASAP– it's very effective for a lot of patients. Thank you for sharing your story. You are giving a lot of melanoma patients reason to hope. And please do keep us updated about how things go with you and what type of follow-up treatment you choose. I will pray for your continued success.  

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      JC
      Participant

      The problem is nothing could have been done differently, for a very thin stage I melanoma like that – they dont' do scans, they dont' do any adjuvant therapy, they don't really do anything. . basically they say you don't even need an oncologist, just skin exams.  When people with your pathology post here, level II, 0.50mm, they are told exactly that. . "you dodged a bullet". People even refer to some Taran/Heenan study showing no level II lesion spread in 1700 patients they followed, etc…  Honestly, I don't know what even the top specialist in the world would do if someone with that pathology visited them, not much.

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      JC
      Participant

      The problem is nothing could have been done differently, for a very thin stage I melanoma like that – they dont' do scans, they dont' do any adjuvant therapy, they don't really do anything. . basically they say you don't even need an oncologist, just skin exams.  When people with your pathology post here, level II, 0.50mm, they are told exactly that. . "you dodged a bullet". People even refer to some Taran/Heenan study showing no level II lesion spread in 1700 patients they followed, etc…  Honestly, I don't know what even the top specialist in the world would do if someone with that pathology visited them, not much.

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      JC
      Participant

      The problem is nothing could have been done differently, for a very thin stage I melanoma like that – they dont' do scans, they dont' do any adjuvant therapy, they don't really do anything. . basically they say you don't even need an oncologist, just skin exams.  When people with your pathology post here, level II, 0.50mm, they are told exactly that. . "you dodged a bullet". People even refer to some Taran/Heenan study showing no level II lesion spread in 1700 patients they followed, etc…  Honestly, I don't know what even the top specialist in the world would do if someone with that pathology visited them, not much.

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      JC
      Participant

      so, there is value in LDH and chest xray for stage I patients then? 

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      JC
      Participant

      so, there is value in LDH and chest xray for stage I patients then? 

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      JC
      Participant

      so, there is value in LDH and chest xray for stage I patients then? 

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      JC
      Participant

      that's why 5 year disease free survival rate is not a great stat, thin lesions tend to recur later after more years

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      JC
      Participant

      that's why 5 year disease free survival rate is not a great stat, thin lesions tend to recur later after more years

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      JC
      Participant

      that's why 5 year disease free survival rate is not a great stat, thin lesions tend to recur later after more years

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      BrianP
      Participant

      Thanks for sharing Mat.  I also think you have done a great job so far.  I often look back 7 years ago when I was diagnosed with a .91 mm skin melanoma and think how naive I was and what I could have done differently.  I guess it doesn't do much good to dwell on such things but I do think there's value in posting your story so others can learn from your experience.  I'm so glad to hear your treatment seems to be doing so well for you.  I hope your "reset" gives you t he time you need for some great future options.  If things go well for me I should be starting the Novi/IPI combo trial (NCT01783938) on Tuesday .  I think it's a pretty good option and I believe they are recruiting at a sight in Philly.  Good luck to you!

      Brian

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      BrianP
      Participant

      Thanks for sharing Mat.  I also think you have done a great job so far.  I often look back 7 years ago when I was diagnosed with a .91 mm skin melanoma and think how naive I was and what I could have done differently.  I guess it doesn't do much good to dwell on such things but I do think there's value in posting your story so others can learn from your experience.  I'm so glad to hear your treatment seems to be doing so well for you.  I hope your "reset" gives you t he time you need for some great future options.  If things go well for me I should be starting the Novi/IPI combo trial (NCT01783938) on Tuesday .  I think it's a pretty good option and I believe they are recruiting at a sight in Philly.  Good luck to you!

      Brian

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      BrianP
      Participant

      Thanks for sharing Mat.  I also think you have done a great job so far.  I often look back 7 years ago when I was diagnosed with a .91 mm skin melanoma and think how naive I was and what I could have done differently.  I guess it doesn't do much good to dwell on such things but I do think there's value in posting your story so others can learn from your experience.  I'm so glad to hear your treatment seems to be doing so well for you.  I hope your "reset" gives you t he time you need for some great future options.  If things go well for me I should be starting the Novi/IPI combo trial (NCT01783938) on Tuesday .  I think it's a pretty good option and I believe they are recruiting at a sight in Philly.  Good luck to you!

      Brian

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      JC
      Participant

      What would you/could you have done differently?  What is offered to Stage I people that you would have done?

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      Mat
      Participant

      Brian, thanks.  Best of luck with the ipi/PD-1 trial.  You are correct that UPenn is a trial site, at least for the BMS combo.  I'm personally now not eligible because (1) I have a brain met (seeing a neurosurgeon on Monday re: gamma knife) and (2) I'm on Tafinlar-Mekinist and my tumors are (hopefully) shrinking.  My oncologist predicts that PD-1 should be FDA approved within the next 6 months (and she's involved with the trial).

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      Mat
      Participant

      Anonymous, you may well be correct that there is nothing more that could have been done for a Stage I patient with my stats.  I certainly haven't heard a doctor say that there is something they would've done differently (though I don't really ask).  With the benefit of hindsight and playing Monday morning quarterback, here are my thoughts:

      About 9 years ago, I started to experience a "racing heartbeat" for lack of a better term.  I started to see a cardiologist.  My heart was tested–stress test, echocardiogram, etc.  No disease whatsoever.  I continued to see the cardiologist for annual visits at which the staff would perform a routine EKG.  About 2 years ago, I said to the cardiologist, "You know, its been a number of years since we did anything other than an EKG.  I have a young family.  Can we do something else to confirm that things are still in good shape?"  He ordered an echocardiogram and everything was fine.

      What would I do differently now about Stage I melanoma (again with the full benefit of hindsight)?  I would've said to my oncologist, "You know, its been a number of years since we've done anything other than blood work and a chest x-ray.  Isn't it true that if we wait for the markers to appear on those tests, it might be "too late" so to speak?  I have a young family.  Can we do something else to confirm that things are still in good shape?  Its been several years since my last CT scan.  Even if insurance won't pay for it, can we look into that?"  

      Now, had I done that, would I have picked the "right" year? Possibly not.  Please don't think that I sit around "beating myself up" about this.  I don't.  I also don't pretend to have the answers here–maybe the answer is just "nothing more".  However, if a single Stage I person reads my post and does more than they otherwise would've done (maybe switches care over to a melanoma specialist from a dermatologist or primary care physician, or keeps a semi-annual appointment they were thinking about skipping), then I suppose I might have helped at least one person.

      More importantly, I wanted to communicate the (seeming) success I've had with the Tafinlar-Mekinist combo.

      Thanks again for your reply.

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      Phil S
      Participant
      Mat, Thanks for telling your story, melanoma is indeed an unpredictable beast! My husband has fought melanoma for over 3 1/2 years now, and been Stage 4 over two years! One thing we learned early on is to have multiple plans of attack. So, just remember you can always still pursue TIL, and get a tumor removed for T cell growth, and have that option in your back pocket. My husband did TIL at MDAnderson in May 2012 and is still stable. I believe NIH will still consider people for TIL who have 3 or less treated brain mets, so don’t turn your back on that option after gamma knife. Glad you are getting a good response to your drug combo, but keep all irons in the fire. Also, our Boston oncologist doesn’t think AntiPD1 will be approved until late 2014 or early 2015, hope he is wrong, but drug companies are also unpredictable! All the best in your fight and continue to keep us posted! Valerie (Phil’s wife)

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      JC
      Participant

      the problem is some doctors don't want to use CT on Stage I people. . they say the rate of false positive is great, they say the risk from the radiation outweights any benefit, they say it won't show microscopic disease anyway, they say we'd be in with symptoms anyway, etc….   should Stage I people be asking for CT scans every 3 years, every 5 years, something else?

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      BrianP
      Participant

      I hope your oncologist is right about the timeline.  That would make things interesting if PD-1 becomes FDA approved since IPI is already FDA approved.  At that point I would think all bets are off on oncologist prescribing whatever combo protocol they want (insurance permitting of course).

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      G-Samsa
      Participant
      Matt–your story is all too familiar to me… Substitute 2001 for 2003 for the original surface lesion and 2012 for 2013 for the year when the Melanoma returned as in internal “meteor shower” that lit up every organ in a PET scan and we have a similar story. I also received annual check-ups and clearance from a recognized expert, but somehow (possibly because expectations for recurrence were so low) had no advance warning.

      To a certain extent I consider myself lucky in that the melanoma has had the patience to bloom during a period of relative enlightenment … I was immediately accepted into the Ipi/anti-pd1 trial that had all the publicity this past April–and have achieved a stable but reduced cancer burden. I don’t think my options would have been as good five years ago. Of course, I am suspicious of every twinge or ache and have my eye on an exit strategy at all times ( The psyche of a melanoma patient). Your drug combo is a candidate escape route for me as mine is for you, I am certain.

      Not exactly sure why I am submitting a comment. I don’t think this adds to your story or message — perhaps it’s only for reinforcement and support. I agree that there should be a standard and long-term protocol applied to “routine” melanoma patients involving periodic scans and LDH testing. I think as we have learned more about the disease our past practice seems terribly naive. I believe my Dr had as big a surprise as I did and was quite shaken by it– Seems there has been ( and may still be) a false sense of security in dealing with follow-up on the shallow lesions…. Perhaps the thought I bring to the table— relates to the patients that have had shallow melanomas removed and have no healthy degree of paranoia an exit strategy.

      I wish you continued success in the fight….

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      G-Samsa
      Participant
      Matt–your story is all too familiar to me… Substitute 2001 for 2003 for the original surface lesion and 2012 for 2013 for the year when the Melanoma returned as in internal “meteor shower” that lit up every organ in a PET scan and we have a similar story. I also received annual check-ups and clearance from a recognized expert, but somehow (possibly because expectations for recurrence were so low) had no advance warning.

      To a certain extent I consider myself lucky in that the melanoma has had the patience to bloom during a period of relative enlightenment … I was immediately accepted into the Ipi/anti-pd1 trial that had all the publicity this past April–and have achieved a stable but reduced cancer burden. I don’t think my options would have been as good five years ago. Of course, I am suspicious of every twinge or ache and have my eye on an exit strategy at all times ( The psyche of a melanoma patient). Your drug combo is a candidate escape route for me as mine is for you, I am certain.

      Not exactly sure why I am submitting a comment. I don’t think this adds to your story or message — perhaps it’s only for reinforcement and support. I agree that there should be a standard and long-term protocol applied to “routine” melanoma patients involving periodic scans and LDH testing. I think as we have learned more about the disease our past practice seems terribly naive. I believe my Dr had as big a surprise as I did and was quite shaken by it– Seems there has been ( and may still be) a false sense of security in dealing with follow-up on the shallow lesions…. Perhaps the thought I bring to the table— relates to the patients that have had shallow melanomas removed and have no healthy degree of paranoia an exit strategy.

      I wish you continued success in the fight….

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      G-Samsa
      Participant
      Matt–your story is all too familiar to me… Substitute 2001 for 2003 for the original surface lesion and 2012 for 2013 for the year when the Melanoma returned as in internal “meteor shower” that lit up every organ in a PET scan and we have a similar story. I also received annual check-ups and clearance from a recognized expert, but somehow (possibly because expectations for recurrence were so low) had no advance warning.

      To a certain extent I consider myself lucky in that the melanoma has had the patience to bloom during a period of relative enlightenment … I was immediately accepted into the Ipi/anti-pd1 trial that had all the publicity this past April–and have achieved a stable but reduced cancer burden. I don’t think my options would have been as good five years ago. Of course, I am suspicious of every twinge or ache and have my eye on an exit strategy at all times ( The psyche of a melanoma patient). Your drug combo is a candidate escape route for me as mine is for you, I am certain.

      Not exactly sure why I am submitting a comment. I don’t think this adds to your story or message — perhaps it’s only for reinforcement and support. I agree that there should be a standard and long-term protocol applied to “routine” melanoma patients involving periodic scans and LDH testing. I think as we have learned more about the disease our past practice seems terribly naive. I believe my Dr had as big a surprise as I did and was quite shaken by it– Seems there has been ( and may still be) a false sense of security in dealing with follow-up on the shallow lesions…. Perhaps the thought I bring to the table— relates to the patients that have had shallow melanomas removed and have no healthy degree of paranoia an exit strategy.

      I wish you continued success in the fight….

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      JC
      Participant

      it certainly seems like maybe what is being said here is a change in the follow-up currently recommended for Stage I shallow lesion patients; instead of no scans, have scans; instead of no blood tests, have blood tests, etc…  are any of the official organizations that put out recommended follow-up thinking about changing what they recommend officially?

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      Janner
      Participant

      In studies, SCANS haven't been proven to change outcome.  That's why some major institutions do not do scans for stage III NED and Stage IV NED unless there are symptoms.  LDH blood test is very non specific for melanoma.  I know someone on here with 70% of her liver involved (LDH test usually targets liver) and her LDH was fine.  Scans do not pick up microscopic disease.  The vast majority of stage I never recur and adding major periodic radiation from scans has its own risk.

      I think the bottom line is that there IS CURRENTLY NO WAY to predict which early stage individuals will progress and there is no way to predict when.  Scanning every early stage individual is never going to happen.  Scans are big business, very expensive and insurance won't cover it.  Scans often find false positives and end up requiring more tests, more scans, and in most cases do not find melanoma.  And it the end, a scan probably won't change the ultimate outcome.  Scans aren't going to prevent someone from recurring and ie 10 years of periodic scans impart a ton of radiation.  Hundreds the amount of radiation as a simple x-ray.  As treatments improve and science becomes better at predicting – there may be better ways in the future to predict.  But we aren't there now.  Scans are always going to be controversial for stage III or stage IV, but they aren't controversial for stage I.  They're not done for stage I.   I, personally, don't thing scans are the answer for treatment for stage I.  But I am hopeful that at some time in the future, markers on a primary will be better indicators of future problems.  Also, other tests might come available to early detection.  Blood tests specific for melanoma have been tried, and failed.  But maybe some day.  But in the end, treatments that can change the survival statistics for melanoma (still abysmal for stage IV) are the most important in my book.

      Janner

      Stage I since 1992, 3 MM primaries

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      tico1
      Participant

      Mat I am so sorry to hear about your story,  but I am so glad to hear of your progress on the new drugs.  Hopefully they will continue to keep the cancer at bay for a long, long time.  You mentioned in your post to find the best melanoma specialist in your area.  We are new to the world of melanoma, and trying to figure out how to do that.  Do you have any tips on how to find the best in the area?

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      tico1
      Participant

      Mat I am so sorry to hear about your story,  but I am so glad to hear of your progress on the new drugs.  Hopefully they will continue to keep the cancer at bay for a long, long time.  You mentioned in your post to find the best melanoma specialist in your area.  We are new to the world of melanoma, and trying to figure out how to do that.  Do you have any tips on how to find the best in the area?

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      tico1
      Participant

      Mat I am so sorry to hear about your story,  but I am so glad to hear of your progress on the new drugs.  Hopefully they will continue to keep the cancer at bay for a long, long time.  You mentioned in your post to find the best melanoma specialist in your area.  We are new to the world of melanoma, and trying to figure out how to do that.  Do you have any tips on how to find the best in the area?

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      Mat
      Participant
      In my case, my colleagues from my office opened up their networks and it quickly became apparent from multiple sources. To my prior oncologist’s credit, my current oncologist was on his short list for second opinions (along with Chapman from Sloan Kettering). If that type of resource isn’t available, I’d suggest starting a new thread on this board identifying your geographical area and posing the question. You also tend to see the same names (at least of hospitals) over and over on this board, e.g., MD Anderson, etc.

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      Mat
      Participant
      Thanks G-Samsa. I’m sorry to hear that someone else is in the “almost statistically impossible” club. You’re right that the “silver lining” seems to be that, all else being equal, this is the best time in the history of the world to date to be a Stage IV melanoma patient. Hopefully our bodies did us a favor by keeping things at bay for so long. Best of luck with the trial. Everyone is so excited about that combo, including my doctors.

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      Mat
      Participant
      Thanks Valerie. Yes, my goal is to get back to the NIH for TIL. At present, you can’t seem to beat their stats on “durable remission”. (I am “out” (temporarily) for liver tumor progression, not the brain met.) Hopefully, AntiPD-1 will get there too in terms of the durable remission stats-presumably a less brutal path For now, I’m riding the Tafinlar-Mek combo as long as it lasts for me.

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        Leonardostagg
        Participant

        Mat,

        my storyc is very similar to yours. I had a stage 1a melanoma removed from my underarm 3 years ago. My sentinel gland was completely clean and was told to come back every 6 months to get a check up. I was told I was a very lucky individual. After doing so for three years with excellent results, I started feeling pain in my left knee this past January. I thought it was a meniscus problem, suddenly I started feeling a cramp on my right leg. I was told by the doctor that since I had pain in my left knee, that I was overcompensating with my right leg and that was causing the "cramp" on my right leg. Finally after the pain became unbearable I had an MRI done, where two large tumors were found, one on my left femur and the other on my right tibia. The doctor then asked me if I had US insurance (I am from Ecuador ) and advised me to fly immediately to the US.  I flew to the Mayo Clinic in Rochester only to find out once I was already there, that the insurance had cancelled my policy a few months before by sending me a letter to an address that had never been mine. After a terrible fight with them with all the stress that the quarrel produces, they agreed that they would pay for all the medical costs until April 18th 2014, the date when the insurance was scheduled to expire. I was operated on both legs on March 19th. I have been on Tafinlar and Mekinist since the first week of April. I am flying to the Mayo Clinic on June 3rd and have appointments on June 5th. I feel that both tumors have been reduced considerably and that I can get radiation treatment immediately .  My fourth grandson is going to be born next Wednesday, and it is the first one that will have my name and last name. I feel these drugs have made it possible for me to live a little longer and appreciate some wonderful moments that I had never dreamed of. 

        In the 50 days that I have been taking Tafiinlar and Mekinist I have had 6 days of fever, 2 days of hot spells at night and about two days a week of diarrhea. A lot better tha what I expected.

        Regards,

        Leonardo

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        Leonardostagg
        Participant

        Mat,

        my storyc is very similar to yours. I had a stage 1a melanoma removed from my underarm 3 years ago. My sentinel gland was completely clean and was told to come back every 6 months to get a check up. I was told I was a very lucky individual. After doing so for three years with excellent results, I started feeling pain in my left knee this past January. I thought it was a meniscus problem, suddenly I started feeling a cramp on my right leg. I was told by the doctor that since I had pain in my left knee, that I was overcompensating with my right leg and that was causing the "cramp" on my right leg. Finally after the pain became unbearable I had an MRI done, where two large tumors were found, one on my left femur and the other on my right tibia. The doctor then asked me if I had US insurance (I am from Ecuador ) and advised me to fly immediately to the US.  I flew to the Mayo Clinic in Rochester only to find out once I was already there, that the insurance had cancelled my policy a few months before by sending me a letter to an address that had never been mine. After a terrible fight with them with all the stress that the quarrel produces, they agreed that they would pay for all the medical costs until April 18th 2014, the date when the insurance was scheduled to expire. I was operated on both legs on March 19th. I have been on Tafinlar and Mekinist since the first week of April. I am flying to the Mayo Clinic on June 3rd and have appointments on June 5th. I feel that both tumors have been reduced considerably and that I can get radiation treatment immediately .  My fourth grandson is going to be born next Wednesday, and it is the first one that will have my name and last name. I feel these drugs have made it possible for me to live a little longer and appreciate some wonderful moments that I had never dreamed of. 

        In the 50 days that I have been taking Tafiinlar and Mekinist I have had 6 days of fever, 2 days of hot spells at night and about two days a week of diarrhea. A lot better tha what I expected.

        Regards,

        Leonardo

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        Leonardostagg
        Participant

        Mat,

        my storyc is very similar to yours. I had a stage 1a melanoma removed from my underarm 3 years ago. My sentinel gland was completely clean and was told to come back every 6 months to get a check up. I was told I was a very lucky individual. After doing so for three years with excellent results, I started feeling pain in my left knee this past January. I thought it was a meniscus problem, suddenly I started feeling a cramp on my right leg. I was told by the doctor that since I had pain in my left knee, that I was overcompensating with my right leg and that was causing the "cramp" on my right leg. Finally after the pain became unbearable I had an MRI done, where two large tumors were found, one on my left femur and the other on my right tibia. The doctor then asked me if I had US insurance (I am from Ecuador ) and advised me to fly immediately to the US.  I flew to the Mayo Clinic in Rochester only to find out once I was already there, that the insurance had cancelled my policy a few months before by sending me a letter to an address that had never been mine. After a terrible fight with them with all the stress that the quarrel produces, they agreed that they would pay for all the medical costs until April 18th 2014, the date when the insurance was scheduled to expire. I was operated on both legs on March 19th. I have been on Tafinlar and Mekinist since the first week of April. I am flying to the Mayo Clinic on June 3rd and have appointments on June 5th. I feel that both tumors have been reduced considerably and that I can get radiation treatment immediately .  My fourth grandson is going to be born next Wednesday, and it is the first one that will have my name and last name. I feel these drugs have made it possible for me to live a little longer and appreciate some wonderful moments that I had never dreamed of. 

        In the 50 days that I have been taking Tafiinlar and Mekinist I have had 6 days of fever, 2 days of hot spells at night and about two days a week of diarrhea. A lot better tha what I expected.

        Regards,

        Leonardo

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      tico1
      Participant

      Thanks Mat.  Thinking good thoughts for you and your family!

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      GAngel
      Participant

      Hi Mat, I am so glad you shared your story and I am thrilled to hear that the combo is doing what you need it to do! I have been praying for you and your family since our first communication and will continue to do so as you fight the battle and reach a result of "NED!" 

      My husband continues to do well on the combo, the side effects are still very minimal as compared to when he was on Zelboraf and much more manageable, thank God! He will see his oncologist tomorrow so and we expect the test results to reflect that he is continuing to respond well, I will post what we learn.

      Always remember the following scripture, especially when things get difficult, "I can do all things through Christ who strengthens me." – Philippians 4:13

      Blessings and love to you and yours, 

      Gina

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      GAngel
      Participant

      Hi Mat, I am so glad you shared your story and I am thrilled to hear that the combo is doing what you need it to do! I have been praying for you and your family since our first communication and will continue to do so as you fight the battle and reach a result of "NED!" 

      My husband continues to do well on the combo, the side effects are still very minimal as compared to when he was on Zelboraf and much more manageable, thank God! He will see his oncologist tomorrow so and we expect the test results to reflect that he is continuing to respond well, I will post what we learn.

      Always remember the following scripture, especially when things get difficult, "I can do all things through Christ who strengthens me." – Philippians 4:13

      Blessings and love to you and yours, 

      Gina

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      GAngel
      Participant

      Hi Mat, I am so glad you shared your story and I am thrilled to hear that the combo is doing what you need it to do! I have been praying for you and your family since our first communication and will continue to do so as you fight the battle and reach a result of "NED!" 

      My husband continues to do well on the combo, the side effects are still very minimal as compared to when he was on Zelboraf and much more manageable, thank God! He will see his oncologist tomorrow so and we expect the test results to reflect that he is continuing to respond well, I will post what we learn.

      Always remember the following scripture, especially when things get difficult, "I can do all things through Christ who strengthens me." – Philippians 4:13

      Blessings and love to you and yours, 

      Gina

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      Mat
      Participant
      Thank you Gina–good thoughts for you and your husband for your appt tomorrow.

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      SarahRS
      Participant
      I am so excited to see this! I am on my 3rd dat ot Taf/Mek and am, already, seeing results! I am not exhausted anymore and I feel more stable, when I walk around my house!

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        EllieS
        Participant
        My skin melanoma was in 1989. In 2013 a mass of metastatic melanoma was discovered in my lower abdominal during a routine pelvic exam. 2013-2014I have has 3 abdominal surgeries, 2016, 3 rounds of IL2, yervoy, opdivo… disease progression. Been on Tafinlar and Mekinist since 2017, NED scans since December 21017….. I get fevers relatively often and need to be on prednisone to control join pain.. I know people stay on this combo until there is diespase progression or unmanageable side effects.
        QUESTION: does anyone know of studies or info of If/ when one can get off of Tafinlar/Mekinist? I am grateful that it is working for me, but. tire of being tired and needing steroids.

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        EllieS
        Participant
        My skin melanoma was in 1989. In 2013 a mass of metastatic melanoma was discovered in my lower abdominal during a routine pelvic exam. 2013-2014I have has 3 abdominal surgeries, 2016, 3 rounds of IL2, yervoy, opdivo… disease progression. Been on Tafinlar and Mekinist since 2017, NED scans since December 21017….. I get fevers relatively often and need to be on prednisone to control join pain.. I know people stay on this combo until there is diespase progression or unmanageable side effects.
        QUESTION: does anyone know of studies or info of If/ when one can get off of Tafinlar/Mekinist? I am grateful that it is working for me, but. tire of being tired and needing steroids.

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        Hi Ellie,
        Now that its been a few months since your comment above, has anything changed for you? I just started my combination Taf/Mek journey and at 2 weeks Im seeing really terrible side effects.

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      JC
      Participant

      What would you/could you have done differently?  What is offered to Stage I people that you would have done?

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      JC
      Participant

      What would you/could you have done differently?  What is offered to Stage I people that you would have done?

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      Mat
      Participant

      Brian, thanks.  Best of luck with the ipi/PD-1 trial.  You are correct that UPenn is a trial site, at least for the BMS combo.  I'm personally now not eligible because (1) I have a brain met (seeing a neurosurgeon on Monday re: gamma knife) and (2) I'm on Tafinlar-Mekinist and my tumors are (hopefully) shrinking.  My oncologist predicts that PD-1 should be FDA approved within the next 6 months (and she's involved with the trial).

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      Mat
      Participant

      Brian, thanks.  Best of luck with the ipi/PD-1 trial.  You are correct that UPenn is a trial site, at least for the BMS combo.  I'm personally now not eligible because (1) I have a brain met (seeing a neurosurgeon on Monday re: gamma knife) and (2) I'm on Tafinlar-Mekinist and my tumors are (hopefully) shrinking.  My oncologist predicts that PD-1 should be FDA approved within the next 6 months (and she's involved with the trial).

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      Mat
      Participant

      Anonymous, you may well be correct that there is nothing more that could have been done for a Stage I patient with my stats.  I certainly haven't heard a doctor say that there is something they would've done differently (though I don't really ask).  With the benefit of hindsight and playing Monday morning quarterback, here are my thoughts:

      About 9 years ago, I started to experience a "racing heartbeat" for lack of a better term.  I started to see a cardiologist.  My heart was tested–stress test, echocardiogram, etc.  No disease whatsoever.  I continued to see the cardiologist for annual visits at which the staff would perform a routine EKG.  About 2 years ago, I said to the cardiologist, "You know, its been a number of years since we did anything other than an EKG.  I have a young family.  Can we do something else to confirm that things are still in good shape?"  He ordered an echocardiogram and everything was fine.

      What would I do differently now about Stage I melanoma (again with the full benefit of hindsight)?  I would've said to my oncologist, "You know, its been a number of years since we've done anything other than blood work and a chest x-ray.  Isn't it true that if we wait for the markers to appear on those tests, it might be "too late" so to speak?  I have a young family.  Can we do something else to confirm that things are still in good shape?  Its been several years since my last CT scan.  Even if insurance won't pay for it, can we look into that?"  

      Now, had I done that, would I have picked the "right" year? Possibly not.  Please don't think that I sit around "beating myself up" about this.  I don't.  I also don't pretend to have the answers here–maybe the answer is just "nothing more".  However, if a single Stage I person reads my post and does more than they otherwise would've done (maybe switches care over to a melanoma specialist from a dermatologist or primary care physician, or keeps a semi-annual appointment they were thinking about skipping), then I suppose I might have helped at least one person.

      More importantly, I wanted to communicate the (seeming) success I've had with the Tafinlar-Mekinist combo.

      Thanks again for your reply.

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      Mat
      Participant

      Anonymous, you may well be correct that there is nothing more that could have been done for a Stage I patient with my stats.  I certainly haven't heard a doctor say that there is something they would've done differently (though I don't really ask).  With the benefit of hindsight and playing Monday morning quarterback, here are my thoughts:

      About 9 years ago, I started to experience a "racing heartbeat" for lack of a better term.  I started to see a cardiologist.  My heart was tested–stress test, echocardiogram, etc.  No disease whatsoever.  I continued to see the cardiologist for annual visits at which the staff would perform a routine EKG.  About 2 years ago, I said to the cardiologist, "You know, its been a number of years since we did anything other than an EKG.  I have a young family.  Can we do something else to confirm that things are still in good shape?"  He ordered an echocardiogram and everything was fine.

      What would I do differently now about Stage I melanoma (again with the full benefit of hindsight)?  I would've said to my oncologist, "You know, its been a number of years since we've done anything other than blood work and a chest x-ray.  Isn't it true that if we wait for the markers to appear on those tests, it might be "too late" so to speak?  I have a young family.  Can we do something else to confirm that things are still in good shape?  Its been several years since my last CT scan.  Even if insurance won't pay for it, can we look into that?"  

      Now, had I done that, would I have picked the "right" year? Possibly not.  Please don't think that I sit around "beating myself up" about this.  I don't.  I also don't pretend to have the answers here–maybe the answer is just "nothing more".  However, if a single Stage I person reads my post and does more than they otherwise would've done (maybe switches care over to a melanoma specialist from a dermatologist or primary care physician, or keeps a semi-annual appointment they were thinking about skipping), then I suppose I might have helped at least one person.

      More importantly, I wanted to communicate the (seeming) success I've had with the Tafinlar-Mekinist combo.

      Thanks again for your reply.

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      Phil S
      Participant
      Mat, Thanks for telling your story, melanoma is indeed an unpredictable beast! My husband has fought melanoma for over 3 1/2 years now, and been Stage 4 over two years! One thing we learned early on is to have multiple plans of attack. So, just remember you can always still pursue TIL, and get a tumor removed for T cell growth, and have that option in your back pocket. My husband did TIL at MDAnderson in May 2012 and is still stable. I believe NIH will still consider people for TIL who have 3 or less treated brain mets, so don’t turn your back on that option after gamma knife. Glad you are getting a good response to your drug combo, but keep all irons in the fire. Also, our Boston oncologist doesn’t think AntiPD1 will be approved until late 2014 or early 2015, hope he is wrong, but drug companies are also unpredictable! All the best in your fight and continue to keep us posted! Valerie (Phil’s wife)

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      Phil S
      Participant
      Mat, Thanks for telling your story, melanoma is indeed an unpredictable beast! My husband has fought melanoma for over 3 1/2 years now, and been Stage 4 over two years! One thing we learned early on is to have multiple plans of attack. So, just remember you can always still pursue TIL, and get a tumor removed for T cell growth, and have that option in your back pocket. My husband did TIL at MDAnderson in May 2012 and is still stable. I believe NIH will still consider people for TIL who have 3 or less treated brain mets, so don’t turn your back on that option after gamma knife. Glad you are getting a good response to your drug combo, but keep all irons in the fire. Also, our Boston oncologist doesn’t think AntiPD1 will be approved until late 2014 or early 2015, hope he is wrong, but drug companies are also unpredictable! All the best in your fight and continue to keep us posted! Valerie (Phil’s wife)

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      BrianP
      Participant

      I hope your oncologist is right about the timeline.  That would make things interesting if PD-1 becomes FDA approved since IPI is already FDA approved.  At that point I would think all bets are off on oncologist prescribing whatever combo protocol they want (insurance permitting of course).

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      BrianP
      Participant

      I hope your oncologist is right about the timeline.  That would make things interesting if PD-1 becomes FDA approved since IPI is already FDA approved.  At that point I would think all bets are off on oncologist prescribing whatever combo protocol they want (insurance permitting of course).

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      JC
      Participant

      the problem is some doctors don't want to use CT on Stage I people. . they say the rate of false positive is great, they say the risk from the radiation outweights any benefit, they say it won't show microscopic disease anyway, they say we'd be in with symptoms anyway, etc….   should Stage I people be asking for CT scans every 3 years, every 5 years, something else?

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      JC
      Participant

      the problem is some doctors don't want to use CT on Stage I people. . they say the rate of false positive is great, they say the risk from the radiation outweights any benefit, they say it won't show microscopic disease anyway, they say we'd be in with symptoms anyway, etc….   should Stage I people be asking for CT scans every 3 years, every 5 years, something else?

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      JC
      Participant

      it certainly seems like maybe what is being said here is a change in the follow-up currently recommended for Stage I shallow lesion patients; instead of no scans, have scans; instead of no blood tests, have blood tests, etc…  are any of the official organizations that put out recommended follow-up thinking about changing what they recommend officially?

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      JC
      Participant

      it certainly seems like maybe what is being said here is a change in the follow-up currently recommended for Stage I shallow lesion patients; instead of no scans, have scans; instead of no blood tests, have blood tests, etc…  are any of the official organizations that put out recommended follow-up thinking about changing what they recommend officially?

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      Mat
      Participant
      Thanks G-Samsa. I’m sorry to hear that someone else is in the “almost statistically impossible” club. You’re right that the “silver lining” seems to be that, all else being equal, this is the best time in the history of the world to date to be a Stage IV melanoma patient. Hopefully our bodies did us a favor by keeping things at bay for so long. Best of luck with the trial. Everyone is so excited about that combo, including my doctors.

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      Mat
      Participant
      Thanks G-Samsa. I’m sorry to hear that someone else is in the “almost statistically impossible” club. You’re right that the “silver lining” seems to be that, all else being equal, this is the best time in the history of the world to date to be a Stage IV melanoma patient. Hopefully our bodies did us a favor by keeping things at bay for so long. Best of luck with the trial. Everyone is so excited about that combo, including my doctors.

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      Janner
      Participant

      In studies, SCANS haven't been proven to change outcome.  That's why some major institutions do not do scans for stage III NED and Stage IV NED unless there are symptoms.  LDH blood test is very non specific for melanoma.  I know someone on here with 70% of her liver involved (LDH test usually targets liver) and her LDH was fine.  Scans do not pick up microscopic disease.  The vast majority of stage I never recur and adding major periodic radiation from scans has its own risk.

      I think the bottom line is that there IS CURRENTLY NO WAY to predict which early stage individuals will progress and there is no way to predict when.  Scanning every early stage individual is never going to happen.  Scans are big business, very expensive and insurance won't cover it.  Scans often find false positives and end up requiring more tests, more scans, and in most cases do not find melanoma.  And it the end, a scan probably won't change the ultimate outcome.  Scans aren't going to prevent someone from recurring and ie 10 years of periodic scans impart a ton of radiation.  Hundreds the amount of radiation as a simple x-ray.  As treatments improve and science becomes better at predicting – there may be better ways in the future to predict.  But we aren't there now.  Scans are always going to be controversial for stage III or stage IV, but they aren't controversial for stage I.  They're not done for stage I.   I, personally, don't thing scans are the answer for treatment for stage I.  But I am hopeful that at some time in the future, markers on a primary will be better indicators of future problems.  Also, other tests might come available to early detection.  Blood tests specific for melanoma have been tried, and failed.  But maybe some day.  But in the end, treatments that can change the survival statistics for melanoma (still abysmal for stage IV) are the most important in my book.

      Janner

      Stage I since 1992, 3 MM primaries

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      Janner
      Participant

      In studies, SCANS haven't been proven to change outcome.  That's why some major institutions do not do scans for stage III NED and Stage IV NED unless there are symptoms.  LDH blood test is very non specific for melanoma.  I know someone on here with 70% of her liver involved (LDH test usually targets liver) and her LDH was fine.  Scans do not pick up microscopic disease.  The vast majority of stage I never recur and adding major periodic radiation from scans has its own risk.

      I think the bottom line is that there IS CURRENTLY NO WAY to predict which early stage individuals will progress and there is no way to predict when.  Scanning every early stage individual is never going to happen.  Scans are big business, very expensive and insurance won't cover it.  Scans often find false positives and end up requiring more tests, more scans, and in most cases do not find melanoma.  And it the end, a scan probably won't change the ultimate outcome.  Scans aren't going to prevent someone from recurring and ie 10 years of periodic scans impart a ton of radiation.  Hundreds the amount of radiation as a simple x-ray.  As treatments improve and science becomes better at predicting – there may be better ways in the future to predict.  But we aren't there now.  Scans are always going to be controversial for stage III or stage IV, but they aren't controversial for stage I.  They're not done for stage I.   I, personally, don't thing scans are the answer for treatment for stage I.  But I am hopeful that at some time in the future, markers on a primary will be better indicators of future problems.  Also, other tests might come available to early detection.  Blood tests specific for melanoma have been tried, and failed.  But maybe some day.  But in the end, treatments that can change the survival statistics for melanoma (still abysmal for stage IV) are the most important in my book.

      Janner

      Stage I since 1992, 3 MM primaries

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      Mat
      Participant
      In my case, my colleagues from my office opened up their networks and it quickly became apparent from multiple sources. To my prior oncologist’s credit, my current oncologist was on his short list for second opinions (along with Chapman from Sloan Kettering). If that type of resource isn’t available, I’d suggest starting a new thread on this board identifying your geographical area and posing the question. You also tend to see the same names (at least of hospitals) over and over on this board, e.g., MD Anderson, etc.

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      Mat
      Participant
      In my case, my colleagues from my office opened up their networks and it quickly became apparent from multiple sources. To my prior oncologist’s credit, my current oncologist was on his short list for second opinions (along with Chapman from Sloan Kettering). If that type of resource isn’t available, I’d suggest starting a new thread on this board identifying your geographical area and posing the question. You also tend to see the same names (at least of hospitals) over and over on this board, e.g., MD Anderson, etc.

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      Mat
      Participant
      Thanks Valerie. Yes, my goal is to get back to the NIH for TIL. At present, you can’t seem to beat their stats on “durable remission”. (I am “out” (temporarily) for liver tumor progression, not the brain met.) Hopefully, AntiPD-1 will get there too in terms of the durable remission stats-presumably a less brutal path For now, I’m riding the Tafinlar-Mek combo as long as it lasts for me.

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      Mat
      Participant
      Thanks Valerie. Yes, my goal is to get back to the NIH for TIL. At present, you can’t seem to beat their stats on “durable remission”. (I am “out” (temporarily) for liver tumor progression, not the brain met.) Hopefully, AntiPD-1 will get there too in terms of the durable remission stats-presumably a less brutal path For now, I’m riding the Tafinlar-Mek combo as long as it lasts for me.

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      tico1
      Participant

      Thanks Mat.  Thinking good thoughts for you and your family!

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      tico1
      Participant

      Thanks Mat.  Thinking good thoughts for you and your family!

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      Mat
      Participant
      Thank you Gina–good thoughts for you and your husband for your appt tomorrow.

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      Mat
      Participant
      Thank you Gina–good thoughts for you and your husband for your appt tomorrow.

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