Lost and Confused. New member
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Lost and Confused. New member

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  • Post
    • November 15, 2017 at 6:48 pm
    Sandi Conley
    Participant

      I had initial diagnosis of melanoma in 1997.  It was on my right foot and I can't remember levels.  Had wide excision with sentinal node byopsy.  SNB came back clear.  No treatment.  Did follow up appointments for 12-13 years, then got lax and quit going when my dr moved away.

      fast forward 20 years ..Jan 2017 went to ER with severe back pain.  CT showed mass on adrenal glands.  I had two lumps removed from chest area and under arm.  They came back melanoma.  (Previous lumpectomies were negative)

      pet scan showed melanoma in bones, adrenal glands and soft tissues.  Went for treatment at IU Simon Center.  Was started on Opdivo/Yervoy treatment.  Was ready to get 3rd treatment when MRI showed mets to brain.  Stopped treatment.  Had radiation to brain.

      In April, Started Tafinlar and Mekinist as I was positive for mutant Braf gene.  Went into remission very quickly.  Remission lasted almost 7 months.  Scans on Nov 7 showed cancer on spine and kidney.  MRI showed 2 small places in the brain.  I will have gamma knife radiation on them Nov 21.

      my Dr has recommended I get a second opinion.  He says it is time for clinical trials.  I live in Indiana and I'm just overwhelmed wondering what the next step should be.  Any advice or encouragement would be appreciated.    Thanks, Sandi.     (68 yr old female)

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    • Replies
        • November 15, 2017 at 7:01 pm
        Bubbles
        Participant

          Sorry you are dealing with all this.  You could restart immunotherapy.  It seems you partially responded before and you weren't on it very long.  We have learned that immunotherapy takes time.  Additionally, folks who initially respond to BRAF/MEK inhibition often recur in about 6-9 months due to tumor work around.  But, we have also learned that we can try alternative dosing schedules, other combo's and combine BRAF/MEK WITH immunotherapy for a new response in some.  On top of all of this…we have tons of data that shows that radition WITH immunotherapy can be very effective for many.  And, finally….there are clinical trials.   So…you do have options and therefore, hope!!

          I am going to given you some links to data….but MPIP only allows 2 per post so….here goes:

          Here is a general primer on melanoma treatments (which you seem already pretty well versed in):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Here is a raft of post re radiation and immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=immunotherapy+and+radiation

          More below…

            • November 15, 2017 at 7:06 pm
            Bubbles
            Participant

              This link will take you to several posts regarding combining BRAF/MEK with immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-atezo-anti-pdl1-with.html

              This link will allow you to search for trials.  It gets tricky because you have to look at exclusion requirements for each.  The bottom of each will tell you where it is being offered.  If you are the least bit interested in ANY of them…CALL the coordinator.  Even if you think you may not quailify!!!  You never know.  

              https://clinicaltrials.gov/

              Ask more questions as you need.  There are many bright and caring peeps on this board.  I wish you my best.  Celeste

            • November 15, 2017 at 10:31 pm
            sister of patient
            Participant

              Hi Sandi – So glad you posted and Celeste has responded with a wealth of great info.

              Just a quick additional thought, as your current doc (an onc??) is saying "2nd opinion," everyone here will tell you to make sure it's with a melanoma specialist!! Perhaps others from Indiana can recommend an oncologist and/or tell you where they are receiving treatment.

              You asked earlier about my sister's history, here's a brief:

              – bone mets to spine, ribs, femur & humerus

              – mets to lungs, liver, spleen, pancreas & omentum

              – brain mets

              – lots of sub-cutaneous mets before treatment

              Treatment:

              – Taf/Mek – was always to be of short duration, to "knock back" the tumour burden and then onto immunotherapy – had a great response in a very short time but grade 3 reaction ended that course

              – 2 combos of Ipi/Nivo infusions, radiation for the brain mets and Nivo maintenance infusions (since Aug. 2016) have done the complete job – no surgery after CLND. 

              Hope this helps and that you have great results from the upcoming gamma!! Best thoughts and wishes!!

              Barb

                • November 16, 2017 at 1:02 am
                Sandi Conley
                Participant

                  Thanks to all of you for responding, Bubbles, Celeste, and Barb.  Barb, your sister sure has been through a lot!  I am so happy for her and for you.

                  my Dr is an oncologist, and has told me about a clinical trial offered at IU Simon Health, I guess I was in a daze, because I only remember it was Opdivo and somethin else.  I know I need a lot more information before I make a decision.  

                  I have also heard of a treatment where they remove white cells from your tumor, do something to them and inject them back in.  Supposedly to train your own immune system to fight the cancer.  Have you all heard of this?

                  we are considering Brown Cancer Center in Loiusville and MD Anderson for second opinions.  

                  I will be looking over all the information you have sent and try to make heads or tails of all of it.

                  thanks again for responding.  I'm sure I will have more questions.

                  The MPIP page is wonderful!  I discovered it in 1997 with my first diagnosis.

                  Sandi

                  • November 16, 2017 at 1:17 am
                  Bubbles
                  Participant

                    The procedure you mention is usually referred to as TIL (Tumor Infiltrating Lymphocytes).  There are several ways to do this.  You can do a basic general search for more info on it…or put TIL into the search button on my blog.  Ask more questions as you need.  And yes.  You need a melanoma expert…not a general oncologist.  Much has changed in melanoma therapies in the past 6 years.  Celeste

                  • November 16, 2017 at 2:21 pm
                  ed williams
                  Participant

                    Hi Sandi, second opinion at MD Anderson sound like good advice. I am surprised that they stopped Immunotherapy after two treatments, it might become an option again at one of the bigger hospitals. Also the pembro+ IDO inhibitor trial data is looking great as well. Best of Luck in finding some options!!!Ed  Here is a link to the MD Anderson web page for Melanoma clinicial trials, lots of options. https://www.mdanderson.org/patients-family/search-results.html?q=Melanoma%20clinical%20trials

                      • November 16, 2017 at 2:24 pm
                      ed williams
                      Participant

                        You might want to type in the search box on the MD Anderson site " melanoma stage 4 " to shrink the search #'s . I just did a general search on the link that I gave you!!!

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