Thread: Need input!
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Old 02-06-2016, 01:25 PM   #31
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...
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Re: Need input!

So Juls, that's great. Dental work over. No need for root tx. Can move forward with Zomenta.

Now they say let it wait till next visit. There it is -- words. Again. They have so much power. We give them so much power!

We hang on their every word, their every pause, deep breath. We see their telling eyes and their body language and we KNOW what they are thinking and it can be very scary.

I must wait till next June to re-visit my discussion about omental caking being written on my CT script as the reason for the test. My point was missed. Oh, we use all different words, doesn't matter. Maybe not for the purposes of the insurance company but to the patient, who sees and reads every word and the agitation it causes -- WORDS MATTER.

Especially when we see a word we haven't heard before in reference to our situation, we become inquisitive and we google and we are emotionally impacted. I want to repeat that reality to my onc who missed my point and will continue doing oh that, whatever, with other patients. Stop thinking about the insurance company and remember THE PATIENT. We are living in a very precarious place and doing the best we can and we need you not to forget that midst your busy day.

Just saying.

Glad you got to know more than ever wanted about bisphosphonates & dental treatment and the risks are the exception not the rule.

But now you can advise others when they are in need.

Sigh.

Keep us posted please.
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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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