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Bee_Rich's Recent CancerCompass Activity

  • Bee_Rich has replied to a post on the message board

    Go! I'm so happy for you. I watched 'Wild' just two days ago, and it rekindled my long held desire to do the entire AT, though I was counting the reasons I SHOULDN'T do it. Now I am inspired again.I'll check in on your journey, and please, when you are on top of mt. mitchell please do a shout out, for it kicked my arse one night and I've not been back.

    April 21 at 1:46 AM view post
    • Bee_Rich has replied to a post on the message board

      Gr2-3 diffuse/invasive here. Through my motor strip so no resection. Favorable results from 12 mo cycle of 300mg Temodar and standard photon radiation. Asked my NO ( Jaeckle at Mayo Florida) and he suggested strongly that I not continue addtl. 6months of Temodar. Cited lack of evidence correlating addtl. temodar with reduction or stabilization of tumor AND known negative FX probabilities. Of course, if I hadn't sta...

      April 08 at 12:39 AM view post
      • Bee_Rich has replied to a post on the message board

        admin please dont delete thread. worthwile discussion. Summary of therapy: 1 gram high CBD marijuana/day, strict ketogenic diet wit emphasis on raw salmon, and strangely, beans, which are usually not on ketogenic menu. meditation, shark cartilage, pomegrante emulsion, and extracts of "20 different medicinal herbs and mushrooms". no smart phone. in 20 months only scar tissue remains. Quack or not? Im on a keto die...

        January 27 at 4:47 PM view post
        • Bee_Rich has replied to a post on the message board

          I'm 4 miles away from UF Health/Shands and wished I had gone to Moffit instead for surgery. The UF/Shands brain tumor center kinda fell apart when the NO left for Piedmont in Atlanta. Morale was low because the dept. head/neurosurgeon is a d#*k, and I know several people who have settled claims against this individual. And don't forget the $200,000 limit for claims against the hospital and him. Which represents 1/4 o...

          January 27 at 1:26 AM view post
          • Bee_Rich has created a new message board discussion

            Anybody else have a post operative haemorrhage following a 'simple' stereotactic needle biopsy. Any symptoms? I seized in recovery, had left side flaccidity,was in nicu for several days. Did rehab for over a year and am on hi doses of AED's. I'm just wanting to see if ther are any more of us.

            August 07 at 12:28 PM view discussion
            • Bee_Rich has replied to a post on the message board

              quell, your symptoms sound similar to me. I finished temodar Feb this year, radiation last jan. On keppra and vimpat. i noticed cognitive decline a few months ago, also some social withdrawal and more lethargy. providers and other bt patients suggesteg its due to long term radiation fx, incl physical brain changes. exercise, talk therapy and ssri's seem to have helped me some, but its still difficult, especially whe...

              July 12 at 7:16 PM view post
              • Bee_Rich has created a new message board discussion

                DW might be getting new job at stanford, so, I'm interested in hearing opinions on brain tumor program. any info? richard

                June 28, 2014 view discussion
                • Bee_Rich has created a new message board discussion

                  Checking for NO & BT program Reccomendations in SF - Palo Alto region. I'm at Mayo Fla. and am quite satisfied now but we may be moving west.

                  June 11, 2014 view discussion
                  • Bee_Rich has replied to a post on the message board

                    tina, google 'ben williams gbm' he is a long term survivor of gbm. he is a pysch professor and has done exhaustive research. He has published a book avail on amazon, plus two free online updates. worth the read. Don't give up!

                    May 02, 2014 view post
                    • Bee_Rich has replied to a post on the message board

                      forgot to mention that seeing an epileptologist is vital. They are the experts in seizure mgt, and it is an art as much a science. All my NO's, and surgeons defer to my epi-doc and no other neuros are allowed to make changes to my AED's without consulting her first. Even when I'm transported to the ED.  I rather feel like royalty, LOL

                      May 02, 2014 view post
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                      About Bee_Rich

                      Patient
                      Brain Cancer
                      Alternative Treatments, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Emotional Support, Insurance, Local Hyperthermia, Massage Therapy, Physical Therapy, Radiation, Side Effects, Supplements, Surgery

                      51 y/o ex-scientist. 9/24/12:GR2-3 parietal+ diffuse/infilt Astrocytoma dx 11/16/12:post-biopsy hemorrhage&seizures requiring inpatient rehab.
                      12/12:left arm myoclonus(tremors)
                      12/12-01/22/13 rad/temodar
                      now in outpatient PT&OT
                      03/13-02/14:on 5/24 Temodar cycles.tolerated 'well enough'
                      06/13: Titrating off of Dilantin anti-seizure med.
                      07/13 Titrated off of Dilantin. next is Klonopin
                      no seizures...yet
                      01-14-03/14:Titrated down Keppra to 1500mg/day
                      03/14: Post temodar MRI show reduction of 'hot spots'. now on 3 mo. MRI schedule..yea!
                      04/14: considering titrating Vimpat
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                      please excuse my spelling & use of no caps. Left arm/hand still not 100% after post biopsy bleed
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                      3/13 "I hope have enough time here to instill a sense of life (and death) appreciation in my boy, a will to live with vigor, intent and meaning. To accept the risks with gusto, and to keep fighting with all ye' got!"
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