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Bee_Rich's Message Board Messages

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RE: Anaplastic Astrocytoma

by Bee_Rich - August 26 at 7:27 PM

forgot to mention the fx of anti-seizures are significant too. Very fatiguing, afternoon naps are very helpful. I take Keppra & Vimpat plus other drugs that wipe me out. Again I'll take the side fx, if they keep me alive and mostly functional! keep positive and laugh along with the crying.

RE: Anaplastic Astrocytoma

by Bee_Rich - August 26 at 7:22 PM

I had concurrent temodar & radiation for my diffuse, infiltrative AA. While not so pleasant, I would recommend it, if it might give better results. My tumor shrank some and has been mostly stable since I finished 12mos. of temodar in Jan 2014. I think my biggest issue has been the long term fx of tumor necrotic tissue. Mostly balance, limb strength and some sensitivity to sound. NO says I could be good for many years, or not. no way to predict. I do try to stay on a ketogenic diet and exercise is important. Currently hoping to get back to taekwando, after a fall, concussion took me out some weeks ago.

I'll take that. :-)

get a refferal to a nuerologist that specializes in seizures, aka epileptologist.My epi is in the top 3 of all my care providers, and ALL of my meds get run by her first. Even my neuro-oncologist defers to her with my seizure/tremor meds. where  are you located, she might give recommendations

RE: LIVING with brain cancer

by Bee_Rich - July 26 at 3:05 AM

On Jul 19, 2015 6:26 PM Dodgerblue wrote:

Well, my scapula is healed, and I had a clear MRI 7/7/15.  So, I guess it's time to get back on the Appalachian trail and see if I can hike the remaining 2040 miles.  The fall I suffered has rendered me with a healthy fear of getting hurt again, but I swore not to live in fear after being diagnosed, so I don't plan starting now.  I'll be as careful as I can and go as far as I can!  Wishing all the best in life and health.

Dodger

http://www.trailjournals.com/entry.cfm?trailname=18181 "" target="_blank" rel="nofollow">http://www.trailjournals.com/entry.cfm?trailname=18181 " target="_blank" rel="nofollow">http://www.trailjournals.com/entry.cfm?trailname=18181

Well, Dodger, I too just suffered a setback. A few days after my last post, I Slipped and fell on hard floor and ended up with a concussion. So no more Tae kwan do far a while, but I'll recover. Just holed up and resting for now. I'll be exercising hard soon!

RE: LIVING with brain cancer

by Bee_Rich - July 19 at 11:28 PM

Way to go, Dodger!

I've enrolled in Tae-Kwan-Do classes, and have the instructor treating me as anyone else. Like Dodger my left side is deficient from post-biopsy bleed that left me paralyzedfor a week back in 2012. Worked hard at PT during radiation/Temodar Year. but it really maxed out for me earlier this year. Joined Gym doing normal stuff, but unless one has trainer its hard to motivate oneself.

So, when summer special 100$/10 wks at my boy's TKD was offered, I jumped on it. Miserably hard conditioning for first three weeks, but doin better now, Left side is getting MUCH stronger, Losing body fat , building muscle definition and stamina, and instructor drives me hard. And its great to "punch & kick my "tumor"" at least in my minds eye. Meditation comes better and easier now. Feel physically much better with more stamina and mental clarity.

Didnt think I'd be here now if ever , during the chemo & radiation.

Keep fighting All!!

RE: Alternative

by Bee_Rich - July 19 at 11:16 PM

as prophet jerry mcguire said: "show me the money!!!"

i.e.,  valid data.

hah,yeah what dodger says. Im 18 mos post temodar and take 40 pills/day of anti-seizures plus other pills.Whats one more, lol

RE: Appalachian Trail Thru hike

by Bee_Rich - April 21 at 1:46 AM

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.

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.

comments?

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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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