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LH2000
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LH2000

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      • September 4, 2020 at 5:47 pm
      LH2000
      Participant
        My wife has had SRS twice. Nov 2018 and Mar 2020. Seems like they’d want at least 6 months in between, maybe 12. Our radiologist thought our US insurance would only pay for a 2nd round of SRS, not a 3rd rounds, so he actually went after 16 brain mets, majority of which were very small and not normally treated, but he wanted to get everything cleaned up. He also says the best SRS can do is get about 90% of the lesions, so there’s always some residual. But that’s one guy’s opinion.

        Also, supposedly the targeted therapies have a better chance of working on brain lesions as they are “small molecule” and can pass thru the “blood brain barrier”. Immunotherapies are larger things and supposedly do NOT get thru the BBB. Though immunotherapies can be VERY effective in general for many.

        • September 4, 2020 at 9:36 pm
        LH2000
        Participant
          Thanks, Celeste, you are amazingly helpful to all of us on this challenging journey! I really appreciate all that you do, your quick responses and great help accessing new critical info is a HUGE HELP!

          All the best,
          Larry and Jean

          • May 6, 2020 at 12:49 am
          LH2000
          Participant
            Donna,

            Hope you are doing better now. I lost my spleen due to a car accident when 19 yrs old, 40 yrs ago… Now 59 and only had 8 sick days from work over 37 yr professional career, never any problems and have been super active. Don’t worry about spleen at all. That said, my wife is the patient w stage 4 Mel. She’s had asthma long term and pneumonia twice, but still plays tennis 3-4 times/week, despite the cancer.

            • May 5, 2020 at 3:58 pm
            LH2000
            Participant
              Thanks a ton, Celeste, extremely helpful!
              Re Docs: we are in Rochester NY so treated at the Univ of Rochester Med Ctr, Dr. Deepak Sahasrabudhe, one of just 2 med oncologists. Rated about #41. Jul 2019 2nd opinion w/ Dr. M. Postow at MSK (#2) and then Feb 2020 at MD Anderson (#1) clinic at Cooper Univ in Camden, NY w/ Dr. J. Morrison. They tended to agree w/ Dr. Deepak, MSK works closely with him. Suggest maybe NRAS focused CT such as combining MEKi (Cobimetinib or Trametinib) with CDK inhibitor Ribociclib. Or ACT-TIL. We are planning to go to Moffitt (#8) in Tampa to see Dr. Khushalani in next few months as we have a 2nd home about 1 hr north of Tampa. At home in Roch, we are also about 1 hr drive from Roswell Park CC in Buffalo (#14) and have looked at possible trials etc there, but prefer to use Moffitt if we switch from Roch NY.

              Re genetic testing: Foundation One testing showed most important were NRAS and ATM mutations. Tumor Mutational Burden = Intermediate, meaning moderate response to immuno. Microsatellite status = MS-Stable, meaning less likely to respond to PD-1 immuno, which is why Nivo hasn’t worked probably. TERT promoter -146C>T, this does not seem very important or attackable. BRAF negative, KIT negative.

              Thanks again!

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