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Andrea Barnett Budin · 01-22-2016, 04:41 PM

I 2nd ev word Agness wrote in above post.

Get copies of ev report and read them. I need to google a few key words sometimes but I get the gist. So will you.

Compare all reports to previous ones.

Remember WORDS MATTER. I know you know this.

NOTHING should be kept from the patient.

My breast surgeon in 1995 who was wonderful in all ways possible confided in me that he hated trials. Because of things such as withholding info you would hopefully ordinarily tell the patient.

B/c they stick to a certain protocol, regardless of what is going on with you, and often to your detriment. I have witnessed this first hand. I was outraged. Clearly the chemo wasn't working and the cancer was spreading (while on chemo) and the onc kept saying let's wait and see with the next set of scans (in 8 wks). And then he did the exact same thing again.

She kept spreading and they kept her on the chemo that obviously wasn't working. Till they stopped all chemo, period, and let her die...

So, what I'm saying is stay positive, be alert, be nosy and noisey...!!!

AGNESS -- "Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what. "

You have the right to know what is what.

And again as Agness says, listen to your body. You could have a mosaic of different cancer types and you have to viewed in that way, with that in mind. No cancer is the same as another even if they have the same pathology. Every "body" is different. Responds differently. Your tx must be tailored specifically to you and what you have going on.

They spotted bone mets and didn't order bone scan?? That sounds not right.

I would discuss this and request this. It is obvious that it is needed, no?

You had mentioned xray and seeing orthopedic surgeon a while ago, or is my sense of time totally messed up?

We are all with you, Juls. Post away.

Hugs,
A.

01-22-2016, 04:41 PM	#23
Andrea Barnett Budin Senior Member 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	Re: Need input! I 2nd ev word Agness wrote in above post. Get copies of ev report and read them. I need to google a few key words sometimes but I get the gist. So will you. Compare all reports to previous ones. Remember WORDS MATTER. I know you know this. NOTHING should be kept from the patient. My breast surgeon in 1995 who was wonderful in all ways possible confided in me that he hated trials. Because of things such as withholding info you would hopefully ordinarily tell the patient. B/c they stick to a certain protocol, regardless of what is going on with you, and often to your detriment. I have witnessed this first hand. I was outraged. Clearly the chemo wasn't working and the cancer was spreading (while on chemo) and the onc kept saying let's wait and see with the next set of scans (in 8 wks). And then he did the exact same thing again. She kept spreading and they kept her on the chemo that obviously wasn't working. Till they stopped all chemo, period, and let her die... So, what I'm saying is stay positive, be alert, be nosy and noisey...!!! AGNESS -- "Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what. " You have the right to know what is what. And again as Agness says, listen to your body. You could have a mosaic of different cancer types and you have to viewed in that way, with that in mind. No cancer is the same as another even if they have the same pathology. Every "body" is different. Responds differently. Your tx must be tailored specifically to you and what you have going on. They spotted bone mets and didn't order bone scan?? That sounds not right. I would discuss this and request this. It is obvious that it is needed, no? You had mentioned xray and seeing orthopedic surgeon a while ago, or is my sense of time totally messed up? We are all with you, Juls. Post away. Hugs, A. __________________ 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...