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Old 09-23-2007, 08:08 AM   #265
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Exclamation There Is Help!

Tamara,

When I was on Taxotere (a cousin of Taxol) I had what I call deep muscle pain in my arms and legs. And I am talking about pain! Constant. I could not find a comfortable place for myself. In bed, propping pillows everywhere. In my comfy chair/ottoman. I could barely walk. Shuffled. Kept catching my toes and tripping. Held on to walls or any thing to keep steady. Literally crawled up stairs to my bedroom on all fours. I could not stand for more than 10 minutes. I was forever looking for a chair. It was just necessary. I was that shaky and wobbly. When I caught a glimpse of myself in a mirror, I was horrified! I too looked like a little old lady.

IT WAS FROM THE TAXOTERE -- and the after effects lingered for quite some time. Eventually, after many mnths when it passed, I would occasionally get it back. When I mentioned to my onc, I know this sounds crazy (a yr and two after that chemo) but I still get that same deep muscle pain in my arms and legs, he told me it was not crazy and other patients of his had reported the same thing. I derived comfort it that.

I took pain killers (Roxicet) when on Taxotere as my defense. My onc repeatedly told me I would get no medals for bravery by suffering. MJ kept telling me -- take the pain killers at the first sign of a problem. Don't wait. It takes an hr to kick in. Don't hesitate. His *permission* helped me greatly. I take Omega 3 EPA 800 & DHA 400 twice a day and I take Flexoral at night -- all I believe help this. Oh, also Ativan! It gives major anxiety relief. Helps me be ME. I have learned (the hard way) that emotional and psychological stress expresses itself physically! My back used to be in pain 23/7. Some orthopedists wanted to operate. Degenerating disk disease, narrowing of the spine, L4...L5... But another doc -- WHO CHANGED MY LIFE -- and was a physiatrist (a real doc dealing w/the entire body and mind) helped me see the connection between being stressed out and my pain and after yrs of agony, I became pain free.

Hate to push pills, but they do fulfill a purpose and sometimes we need help. It's okay to need help. Anti-depressants chemically alter our anxiety-ridden minds and bring us relief. They give us back our lives. I was on Zoloft after metast and am now on Effexor. I feel joyful and serene, functioning and more like the true me!

I have been on a supplement regiment since '98, during chemo and now as I take Herceptin ev 3 wks. Herceptin does leave me feeling very fatigued w/somewhat flagging red bld cell counts (which are extremely low for ME and leave me feeling zonked). My cancer center isn't giving Aranesp to boost these to *non chemo* patients. Herceptin is a monoclonal antibody. I CALL IT DISCRIMINATION. BASED ON $$$$$. The injection is billed as $8,000 and Medicare and many insur co's aren't paying. (But that's a whole other discussion.)

Some of the supplements are for ENERGY which is a big issue to be grappled with. I have listed my LIST in a 6/30 thread TO "SUPPLEMENT" OR WAIT. I recall trying to list dosage and the reason for each. If you have more questions, contact me, please.

Tamara, honey, you need to whip yourself into shape as best you can. These are all the tools I used to get myself together and they have had miraculous results. I wish the same for you. Do not despair. Bc is a frightening place to be and chemo, as terrible as it can be, is the best weapon we have to annihilate those cancer cells. So, try to see this horrid phase as just that -- a part of a process -- taking you to wellness! Mentally try to troll throughout the day to find those fear-riddled thoughts, experience them, vent them, talk them out, post, post, post -- we don't mind the whining, it's THERAPEUTIC. We understand. And as soon as you possibly can, in a hr or so -- replace those awful thoughts and images with thoughts of you being victorious. Seeing yourself far into the future in vivid detail. Crossing the finish line with your arms raised in triumph. Much to do, but so very worth it...

Sending you big hugs and much loving, healing energy. I feel your pain. I have lived it. And I have survived. So will you, Tamara. So will you.
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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