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Old 02-20-2017, 02:50 PM   #11
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
Re: Need input!

On Long Island (NY) I had two additional oncologist's. One in Manhattan. One in Westchester. Both requested I bring CTs to them for their radiologists to review.

This was 1999. All my many CTs were STABLE showing same tumors in liver. I had multiple tumors throughout liver too many to count from the getgo. So what they saw was what remained. After Taxotere 9 mnths and Herceptin 7 months at that time.

I got copies of MY Ct's which we all have a right to, from the Imaging Center and I subsequently collected copies after every CT (waiting back in waiting room for 10 minutes to get them).

I took the CTs to both oncs who each had their radiologist read them.

Both independent radiologists who did not know each other (one in Manhattan with Mt. Sinai), one in Westchester with radiologist previously from Sloan Kettering) -- said the same thing.

WHAT I AM LOOKING AT IS NOT TUMORS. THEY LOOK MORE LIKE NECROTIC TISSUE. THEY ARE CYST-LIKE, FILLED WITH FLUID.

Both radiologists said -- I WAS STABLE WITH NO EVIDENCE OF DISEASE.

From that moment on I decided to listen to radiologist #2 and #3.

I have remained STABLE WITH NO EVIDENCE OF DISEASE SINCE APRIL OF 1999.

I remained on Herceptin till 2008.

Been off tx since.

Still STABLE.

Still happy.


I would have insisted on a biopsy before tx. It is our right.

I see you write you have no choice and I remember thinking when I first saw you write those words it didn't sit well with me.

Forgive me for being blunt, but we always have a choice. We are talking about our body and our life !

I informed my oncs that I was a part of the team. I was a part of the decision making.

I was moved to say that because one onc had made a decision to give me more Taxotere than the stated, conventional protocol at the time (1998/1999).

I also had a Florida onc. I spent half the time on Long Island and half the time in Boca. I carried a FLOW SHEET from onc to onc, to keep everyone on the same page.

When I got to Boca Dec of 1998 I felt like total crap. I could barely walk (I shuffled and kept tripped as I couldn't lift my leg/foot enough to clear the floor) and I could barely speak above a whisper.

I had a pleural effusion and a peri cardial effusion from the Taxotere among many awful side effects that were painful and debilitiating.

My Boca onc looked at the flow sheet and said OH NO WONDER YOU FEEL AS YOU DO. YOU HAD AN EXTRA WEEK OF TAXOTERE THAT YOU WEREN'T SUPPOSED TO HAVE. NO BODY CAN TAKE THAT MUCH TAXOTERE.

When I got home I called my very much loved Long Island onc and was told by his nurse that well DOCTOR DECIDED YOU WERE DOING SO WELL (WITH SHRINKAGE) THAT HE WOULD GIVE YOU AN EXTRA WEEK.

That should have been discussed !! Well, it was the doctor's decision.

NO. NO. NO. I am a part of the decision making panel. I am on the team !!

And I made that clear to all my oncs. As I say, we were talking about my body and my life. I may have chosen or been persuaded to do the same thing but I should have been given the choice.

That's my take.

I don't mean to be blunt or rude. Forgive me if I sound it. But I feel passionately about this. And yes, I am outspoken. I feel it's my responsibility to share what I've learned with friends. That's what good friends do. Hell, I would share my thoughts with strangers. You can always ignore me. Just hear me out.

I love you, Juls, and I love you all.

I am always on YOUR side! Always !!

Hugs to all,
Andi
__________________
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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