Thread: Need input!
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Old 01-22-2016, 05:24 PM   #28
Andrea Barnett Budin
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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!

I understand and it is all being handled poorly, I agree.

Nurse is advising. Doc seems absent. Assume she is repeating his instructions but can't be sure.

But from googling it does seem prudent to do all possible dental work before NOT DURING Zometa.

Seems easy enough to do.


I doubt anything even in writing from the dentist will assuage your team's concern about the possibility of damage to the jaw if done during Zometa. I'm sure you don't want bone loss to the jaw so why are you resistant to doing whatever need be with your dentist immediately, to speed the process.

Doesn't seem outrageous, but perhaps I am not fully understanding your reasoning.

Yes, you surely have lots to be dissatisfied about with your team. And I am proud of you for not only expressing your disappointment but doing it clearly.

If they are displeased with you standing up for yourself (as you rightly should and must) that is their problem. They may be accustomed to -- 'I'll let the doctor worry about that' patients. They absolutely would be distressed by me I can assure you.

Why weren't they telling you and / or watching the bone lesion 5 x. How often are your CTs? Why didn't they order a bone scan long ago? Why aren't they on top of your medical situation?

Seems like the nurse is stuck between you and the doc. Can you not communicate directly with the doc? Send him a FAX. That's what I do. Then my concerns are in writing and must be addressed. My FAXs are always followed up by a call from the doc, as his/her name is in the top line of the FAX. TO _______________...

FROM: My name
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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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