Bee_Rich's Message Board Messages

Showing 1 - 10 of 183

Page 1 of 19

RE: Keppra

by Bee_Rich - Monday at 1:10 AM

I've been tapering keppra from 3000mg, but have stopped at 1500mg when i started getting pre seizure symptoms.

May start titrating my vimpat soon too.

both in combination have stopped all seizure activity since dec. 2012, and only side fx are fatigue. I usually take a 2-4 hr nap during daytime and all is good.

Epileptologist says both have very low tox profile.

my shortterm memory is going to hell, but likely is long term rad fx.

I'll gladly take all these fx and more if i can keep breathing and getting hugs from my 7yr old boy!

I could say much the same with my journey. I have diffuse/infiltrative gr 2 + astrocytoma. did the std. photon radiation & 12 mo. temo.  Good MRI results so far. Been having memory issues lately likely from the radiation.

RE: Keppra and Itching

by Bee_Rich - March 18 at 6:18 PM

holy moly joseph! , calendula was one of the otc's that my dermatologist recommended during my last visit. I thought I would remember it, haha silly mortal, what was I thinking, I'm such a ditz now bc of long term radiation fx.



petitioned signed and i sent a pic too.

thanks karyn

RE: Tumor returned after 12 years

by Bee_Rich - March 14 at 12:24 PM

my NO would probably say you will do very well after the chemo and rads. He sees many II and III's chugging along. May you be one too!

RE: Physical Therapy Question

by Bee_Rich - March 11 at 2:21 PM

I still do outpatient PT 15mos. after a brain biopsy bled, leaving my left side immobile. did inpatient rehab hospital for a couple weeks then started 3x/wk outpatient PT..I don't look disabled to most.

Stiil have fine motor deficiencies, but I will overcome those eventually.

plus my body is becoming a fine sculpted piece of art! 

RE: Keppra and Itching

by Bee_Rich - March 11 at 2:11 PM

I take keppra and vimpat plus a couple others. yes, i've had rashes and severe itching even w/o rash . My dermatologist prescribed a few steroid ointments tha help quite a bit. Good 'ol calamine works too, plus moisturizers. I occasionly take oral prednisone too, when it gets crazy itchy.

oh, and contact with some clothing like pj bottoms makes the itching much worse too.i just wear shorts then.

I am having long term radiation(?) symptoms simmilar to jon;s wife. I am about a year out from end of my radiation.

Saw my NO yesterday. He was insistent that activivities such as crossword puzzles, board games, math problems, writing, online games (lumosity.com) improve the 'plasticity' of the brain. IOW, other parts of the brain will take over for the damaged areas. His visiting fellow from Rochester cited examples and reasearch that is very inspiring!

Showing 1 - 10 of 183

Page 1 of 19


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-present:on 5/24 Temodar cycles.tolerating 'well enough'
06/13: Titrating off of Dilantin anti-seizure med.
07/13 Titrated off of Dilantin. next is Klonopin
no seizures...yet
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!"

We care about your feedback. Let us know how we can improve your CancerCompass experience.