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Bee_Rich's Recent CancerCompass Activity

  • 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 at 12:33 AM 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 at 3:18 AM 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 at 1:47 AM 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 at 1:34 AM view post
                  • Bee_Rich has replied to a post on the message board

                    when i was readmitted to hospital NICU with partial complexes, the epileptologists upped my Keppra to 3000/ day & upped dilantin. Was Still seizing, so they added Vimpat at 500 a day, which worked. Went back in a month later, Added Klonopin at about 450 a day and I think they upped dilantin , which I kept metabolizing below therapeutic levels, so they started titration down. Did the radiation thing plus temodar...

                    May 02 at 1:24 AM view post
                    • Bee_Rich has replied to a post on the message board

                      " I'd think of a good prank to pull on surgeon during surgery," too funny, wish i had pranked surgeons during my biopsy. I did tell stories about getting stung by wasps/bees in 'sensitive areas' tho. And i guess my post biopsy hemmorage + seizures + months of rehab was surgeon's prank on me. yippee-frickin'-doodle

                      April 29 at 9:43 PM 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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