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tchrist14's Recent CancerCompass Activity

  • tchrist14 has replied to a post on the message board

    Awesome! You are in good hands!

    September 25, 2015 view post
    • tchrist14 has replied to a post on the message board

      Agreed there! Never use "High Grade Net" as what gets you in or keeps you out of trials. You should have genetic studies done that will note what genes the cancer have and the trials or meds are based on those results. The trial my wife was on for a year was actually for a type of bladder cancer so you never know. She couldn't get into the PDL-1 trial.

      September 24, 2015 view post
      • tchrist14 has replied to a post on the message board

        I think Dr. Wolin moved to NY recently from Kentucky. He is a High Grade Net guru. Dr. Liu in Colorado, Woltering in New Orleans, Dr. Odisorio in Iowa. There are several in CA and out west as well but not many are well versed in treating High Grade/Poorly Differentiated. Make sure whomever you choose is familiar with treating High Grade. Because of the typical poor outcomes with High Grade/low diff, most are not as f...

        September 24, 2015 view post
        • tchrist14 has replied to a post on the message board

          My wife goes to The FCS in Ft. Myers. The trial is given at several locations in the country but I know at one time there was only my wife and 1 other Pt. in California still on it. She did it for 10 months.

          January 04, 2015 view post
          • tchrist14 has replied to a post on the message board

            Just to update....my wife is still on the Afinitor. Having the first CAT scan since she started taking it in 2 weeks so we will see how it's doing. She also started a bone strengthning shot called XGEVA that she will get once a month. 

            September 04, 2014 view post
            • tchrist14 has replied to a post on the message board

              She has swelling in her right leg from a blood clot. It almost killed her during surgery and she is on levonox every day for it. She has pain and spasms in her sacral area due to a fractured sacrum from metastisis to the bone in that area. She takes Gabapentin and pain meds for it.

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              • tchrist14 has replied to a post on the message board

                Wow...small world! My wife's is attached to the vascalature in that area and the other bigger tumor attached to her bladder. She has had mets all over but was resolved. The most recent mets they found a few weeks ago are in her right lung. 

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                • tchrist14 has replied to a post on the message board

                  Thank You! We have tried twice to find the primary and other than opening her up again and looking for it that way our options of finding the primary are out. It would not change her treatment at all regardless. She has 2 tumors in areas that cannot be removed. (Bladder and IVC in right pelvis area). Her treatment would be the same whether they found the primary or not. As far as they know, the GYN Oncologist may hav...

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                  • tchrist14 has replied to a post on the message board

                    She did 6 rounds of carboplatin/Etoposide then was put on a clinical trial using Taxotere and a new nanoparticle delivery system.

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                    • tchrist14 has replied to a post on the message board

                      She had it done last year in March and they couldn't determine the primary. She just got off a clinical trial after being on it for 11 months. only her and 1 other person in the country were on it for that long. We've been told by 3 Neuroendocrine doctors that with High Grade and Low Diff, the primary doesnt really matter. Thie testing at Foundation One suggested another trila she could be a candidate for but would h...

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