Bee_Rich's Message Board Messages

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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 stabilized, treatment would be considered.

And I am in my 50's. If your daughter is in teens to 30's treatment can be quite different (less aggresive)

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 diet and some herbs and mushroom xtracts. would like to do medicinal marijuana too, so my personal adjuvant therapy is somewhat like punisyn's above.


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 of his annual salary. No lawyer would take my case b/c the 200K wasnot enough.

Anyway, not sure how it is now, as i hightailed it to Mayo clinic in Jacksonville. Thoroughly satisfied w/ NO Dr. Kurt Jaeckle, staff and hospital. Night and day difference. I'll never go to Big Shands unless I have tonic/clonic seizure, as the Neurology docs and staff are great, including the epileptologists I now see as outpatient.

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.

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 when i miss the exercise, like right now due to addtl health issues.


by Bee_Rich - June 28 at 12:33 AM

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


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.

RE: need info

by Bee_Rich - May 02 at 1:47 AM

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!

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

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 5/24 and was able to titrate off dilantin/klonopin in 6mos. Have Ativan if I get sensory overload and I start feeling pre-seiz tinglies.

Keppra & Vimpat have no toxicity issues, so longterm use is ok. But fatigue and keppra pissiness is difficult, so i'm down to 1500/day, which i think is my lower limit.( I'm tall and weigh almost 300# so your mileage may vary).

I've decided to wait untill fall or winter to titrate down the vimpat b/c in FLA, driving privs are suspended until 3 mos. after the last titrate is completed and I want to drive this summer--july 1st! - take my 7yr old fishing, etc...may not have another chance!

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About Bee_Rich

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
please excuse my spelling & use of no caps. Left arm/hand still not 100% after post biopsy bleed
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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