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RobinMB's Recent CancerCompass Activity

  • RobinMB has replied to a post on the message board

    Dear Jeff, I sensed the sadness in your e-mail, and I understand your frustration with the lack of treatments for GBM.  You are correct.  There are not enough advances being made in the area of brain cancer.  There is not enough funding because it is not as common as other cancers.  (I question the statistics too.)  So much more needs to be done to improve treatment and outcomes. Oh, I reme...

    August 13 at 12:28 AM view post
    • RobinMB has replied to a post on the message board

      Funny thing happened today, Glitzy.   I was talking to my son's fiance about what type of dress and jewelry I should buy for their weidding.  She said, "nothing too glitzy, and I immediately thought of you:. What your describing must be quite common among all of us who have recently lost a loved one.  I joined a volunteer network for the ABTA (American Brain Tumor Association) to see if there is...

      August 01 at 10:39 PM view post
      • RobinMB has replied to a post on the message board

        It's ironic that you said the woman kept her rings on bcause  she didn't want anyone to bother her.  I feel the same way.  My husband has been gone for nearly 7 months, and I, truly, don't want or need a relationship at this time.  Besides, I'd feel pretty sorry for a guy who would try to have a relationship with me.  He would have some really big shoes to fill.  For now, I want to ...

        August 01 at 10:27 PM view post
        • RobinMB has replied to a post on the message board

          I think many of us have feelings of guilt over what we think we could have done to save our loved ones lives.  From what I've learned, often times the doctors hands are tied too.  Some of the alternative/unconventional treatments are not FDA approved, so doctors could face malpractice charges if they prescribe them. But, I do understand how you feel.  I constantly think about how I could have done more...

          August 01 at 10:13 PM view post
          • RobinMB has replied to a post on the message board

            Thanks Sarah!  I'll sleep better tonight as I recall the beautiful heart-shaped cloud.  I'm so glad you started this post!!! Good night :) Robin

            July 11 at 2:05 AM view post
            • RobinMB has replied to a post on the message board

              Sometimes I think the reason I don't want to get rid of my husband's things just yet is because I still really want to feel his presence around the house.  I don't want him to be totally gone even though I know he is.  I hope that doesn't sound strange.  I have a friend who didn't start to get rid of her deceased husband's things until he was gone for six years.  I read this quote somewhere: "Th...

              July 11 at 1:53 AM view post
              • RobinMB has replied to a post on the message board

                These posts are so intriguing to me.  Sometimes I think I received a sign, and then I dismiss it as wishful thinking.  But, when I read that someone else also saw a heart-shaped cloud, I couldn't believe it.  I was sitting in my car at the marina (we used to have a boat) watching the boaters while crying my heart out, and suddenly I looked up and smack dab in front of me was a beautiful heart-sha...

                July 11 at 1:43 AM view post
                • RobinMB has replied to a post on the message board

                  You took the words out of my mouth.  I understand how you feel about the last month.  My husband lost his ability to speak for a little over a month as well.  I was able to tell him everthing I needed to say, but I worry his capacity to understand was gone.  Sometimes I listen to the messages I saved on my phone just to hear him tell me he loves me. I know what you mean about switching place...

                  July 11 at 1:31 AM view post
                  • RobinMB has replied to a post on the message board

                    Hearing your story and knowing you and your sister are so young causes me to think that you have a lot of weight on your shoulders.  The hospital should have social workers who can provide resources for you.  There are more advancements in brain tumor research happening these days.  Don't lose hope just yet.  Along with taking good care of yourself (staying healthy and getting counseling), try to...

                    July 06 at 10:24 PM view post
                    • RobinMB has replied to a post on the message board

                      Hello Ariel, I am not a doctor so I am not offering you any advice. I don't want to give you false hope, but I've read that patients are stopping Novocure too soon.  It takes a while to begin working.  When did your husband start using the device?  And, if the Avastin is working and not causing any side effects, I hope Rico will be able to continue it.  I've read that there is a rebound affect w...

                      July 03 at 4:57 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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