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RobinMB's Recent CancerCompass Activity

  • 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 

    Wednesday 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
            • RobinMB has replied to a post on the message board

              Your husband will be in very good hands if you get him to Duke.  They, currently, have the polio vaccine clinical trial available there.  Duke does not charge to look at MRI's.  Send your husband's MRI cd's there ASAP.  Dr. Henry Friedman will get in touch with you.  He is very responsive to his patients.  The Cleveland Clinic also has several options for GBM.  Dr. Peereboom is gre...

              May 25 at 8:27 PM view post
              • RobinMB has replied to a post on the message board

                My husband died from GBM at age 53.  He never had a root canal.  Would you believe, he never had a cavity.  But, he did have two crowns on his two front teeth.  The back of the crowns were metal.  Just like you, I wish they could determine what is causing GBM.  My husband was in PERFECT health.  Brain cancer came out of nowhere. 

                May 25 at 8:10 PM view post
                • RobinMB has replied to a post on the message board

                  I think you made a good decision by going back on Avastin.  Is it possible for you to have surgery to remove the tumor? Don't give up.  The will to live is a strong predictor of our life expectancy.

                  May 19 at 12:08 AM view post
                  • RobinMB has replied to a post on the message board

                    Hi Felipe, You've come to the right place!  There are so many people on this site who will have good information for you. First of all, I would try to get your dad to a top brain cancer facility.  Some of them are MDAnderson (Dr. David Reardon), Duke (Dr. Henry Friedman), Cedars Sinai (Dr. Keith Black), Cleveland Clinic (Dr. David Peereboom) and others.  Talk to your neuro oncologist about ...

                    May 11 at 1:21 AM view post
                    • RobinMB has replied to a post on the message board

                      Hi Jenny, My heart was breaking for you as I was reading your post :( I have been where you are right now.  My head was spinning when we got the GBM diagnosis, before and after the surgery, and throughout treatment.   Your husband is 43 years old, and that gives him a longer life expectancy than most who are often diagnosed in their 50's with GBM.  My husband was 51 when diagnosed.  I was thank...

                      March 27 at 2:33 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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