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BruceSt's Recent CancerCompass Activity

  • BruceSt has replied to a post on the message board

    Debbie, my mother has been on it for 18 months. Pretty consistently she's managing 65% usage. It's a challenge but has definately extended life. Her GBM caused a hemoragic stroke so her mobility is limited therefore optune has been easier to deal with. We have to change the arrays daily to keep the skin under control. Prayers  going out to you Bruce

    August 12 at 2:50 AM view post
    • BruceSt has replied to a post on the message board

      He just started? We had to get to the point of daily changes too, 4-6 hours off a day. We couldnt take the alcohol long, surprised by that step of the protocol. Get a scrip for 2.5% cortisone, go ahead and start seeing a dermatologist. ..stick with it, it (optune) works GOD bless & best wishes Bruce

      July 07 at 5:03 AM view post
      • BruceSt has replied to a post on the message board

        Hey Linda  Long time!  Good to hear from you although I'm sorry your mom's slowing down. My mother uses a walker some but she's got a lot of left side weakness that was caused by the stroke which was caused by the GBM.  She is still doing optune and we seem to have found a routine there. She currently is in session 9 of maintenance temodar. Just got back from another great visit/MRI at Duke at the e...

        October 06, 2016 view post
        • BruceSt has replied to a post on the message board

          Hi Xanie I was in a similar situation as you 11 months ago. The tumor caused a massive stroke for my now 78 year old mother. Her tumor was completely resected, she got through the 6 weeks and initial 42 days of temodar and has since completed 8 of the 12 maintenence courses of temodar. She's also been using optune since 30 days post radiation. She gets mri's every 8 weeks and we see a doctor at Duke to serve as a 2n...

          September 23, 2016 view post
          • BruceSt has replied to a post on the message board

            Do not wait for him to mention it. you should suggest it. It was not available in the areas that we live and it was prescribed from a doctor in a neighboring state now it is available here since we've inform the doctors in this area. It is approved and it doeshave positive results 

            July 13, 2016 view post
            • BruceSt has replied to a post on the message board

              Have you tried optune?

              July 13, 2016 view post
              • BruceSt has replied to a post on the message board

                What exactly is the wild gene?

                June 29, 2016 view post
                • BruceSt has replied to a post on the message board

                  Wow! Keep us informed, our prayers are with you.

                  June 01, 2016 view post
                  • BruceSt has created a new message board discussion

                    After about 8 good weeks on Optune my mothers scalp has exploded with what appears as burns from the arrays. I assume it's an allergic reaction reaction to the gel. We've taken two weeks off and then changed arrays daily for a week only to run out of healthy scalp. We've tried the typical 1% and precription strength 2.5% cortisone cream. A coupe of other over the counter creams. We've even tried aloe Vera and Manuka...

                    May 30, 2016 view discussion
                    • BruceSt has created a new message board discussion

                      Amitriptyline, doxepin, comipramine. I've read the later two cause apoptosis in GBM but the first may increase serotonin  (as does 5htp) which promotes GBM growth. Does anyone have experience with these? We need to use one for sleep and currently are using Ami which works great but I don't want to encourage GBM growth. -thoughts or experience? 

                      May 18, 2016 view discussion
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                      About BruceSt

                      Caregiver
                      Brain Cancer

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