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RobinMB's Recent CancerCompass Activity

  • RobinMB has replied to a post on the message board

    Oh, please realize that it's the tumor causing your husband's change in personality.  I know it is so difficult to deal with.  My husband was diagnosed with GBM when he was 51.  Prior to GBM, he was very involved with our two young grandsons.  After a while, he rarely interacted with them.  It was heartbreaking, but I was still glad to have him with us.  Another person mentioned Boswell...

    November 01 at 4:02 AM view post
    • RobinMB has replied to a post on the message board

      You could contact Duke to see if they could look at her MRI's and maybe evaluate her.  They have a polio virus vaccine that is showing promise. Have you checked out Optune?  Have you visited the ABTA inspire website or the al musella virtual trials site?  They both have great information and resources for GBM patients and caregivers. She is very young.  She has a better life expectancy than thos...

      November 01 at 3:50 AM view post
      • RobinMB has replied to a post on the message board

        My husband used Boswellia to help with the swelling.  I truly  believed it helped considerably because he remained on a low dose of Dexamethasone the entire 22 months of his life with GBM. Sometimes I wish we wouldn't have agreed to all of the additonal types of chemo that we tried near the end.  They really didn't enable my husband to have a very good quality of life. Have you looked into ...

        November 01 at 3:42 AM view post
        • RobinMB has replied to a post on the message board

          I am a college professor.  At the college where I teach, we provide extensions of time to complete courses in the event if a student is unable to do the work in the 15 week semester.  I think if your daughter wants to attend college part time, it would be good for her to keep her mind focused on something other than GBM.  The support from her peers will be important for her as she receives treatment.&...

          November 01 at 3:32 AM view post
          • RobinMB has replied to a post on the message board

            I would have to agree with the other comments you received regarding Boswellia.  My husband took it while he had GBM.  I truly believed it helped him rely less on steroids.  Best wishes, RobinMB

            August 08 at 1:40 PM view post
            • RobinMB has replied to a post on the message board

              My husband and I flew often to California (4x), Colorado, Florida Keys, and North Carolina while he was receiving treatment for Stage IV GBM.  He also flew to Alaska with my son.  This occurred over a one year period of time.  He never had any difficulties with pressurre or any discomfort. I am so thankful for the trips we took together!!! Enjoy every day, RobinMB 

              July 29 at 11:15 PM view post
              • RobinMB has replied to a post on the message board

                So sorry to hear you had such a bad experience at Roswell Park Cancer Institute.  If it makes you feel any better, we didn't have a very good experience there either  The Nurse Practioner that we dealt with was awful.  I won't mention names only give initials; they are KM.  Roswell really didn't have many options other than treatments that were used over ten years ago.  But, I...

                June 13 at 1:43 AM view post
                • RobinMB has replied to a post on the message board

                  Oh, you are dealing with so many emotions right now.  I am so sorry that you are going through all of this.  I have been exactly where you are.  My husband had GBM.  He was the picture of health until he was stricken with brain cancer. Think about this for a moment.  Would you rather discuss burial plans with your husband or would you rather stay with him and talk about the wonderful life yo...

                  June 04 at 3:11 AM view post
                  • RobinMB has replied to a post on the message board

                    Oh Stephen, I truly understand how you feel.  I couldn't seem to get myself together after my husband passed away from GBM (brain cancer) a year and a half ago.  He was only 53 years old.  He would have retired this year.  We were together for 33 years.  There are days when I still can't believe it happened. I finally went to see my general practioner.  She prescribed Cymbalta for me.&n...

                    June 02 at 3:44 AM view post
                    • RobinMB has replied to a post on the message board

                      There was some good news about the Novocure device onwww.virtualtrials.com  (the Al Musella website).  But, maybe you could talk to your neuro oncologist about a complementary treatment (maybe Temodar or Valcyte).  Have you heard about the polio vaccine that Duke is using to treat GBM?  Dr. Henry Friedman is the contact.  My heart goes out to you.  Stay strong!

                      June 02 at 3:05 AM view post
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                      About RobinMB

                      Caregiver
                      Brain Cancer
                      Cancer Nutrition, Cancer Treatments, Clinical Trials and Research, Naturopathic Medicine, Recipes, Supplements, Surgery

                      Hi!
                      My husband was diagnosed with GBM in Feb. '12. His tumor was in his rt. frontal lobe. He has had 2 craniotomies so far. He also received dendritic cell vaccine treatment after his first recurrence. He isn't the same person that he was before the surgeries. We are trying the ketogenic diet. My husband was on Temodar (low dose) and Avastin. He is considering NovoTTF in the future. Unfortunately, he his on his third recurrence. Now, he is trying a Phase I peptide vaccine clinical trial. We are praying for a miracle!

                      Unfortunately, my husband lost his battle with GBM on Dec. 17, 2013 after a 22 month battle.

                      I miss him profoundly!

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