HER2 Support Group Forums - View Single Post - No tests scheduled after chemo is finished.

Andrea Barnett Budin · 04-08-2013, 06:30 PM

I hear every one of you Ladies!! Nodding.

In '95 -- 4th stage, mastec, 2 out of 21 nodes involved, you can read my signature for details. In '96 after tx I was told, That's it. I asked, When do I have my next CT? No CT. Standard of care. Seriously???????????

I did get my full blood workup ev 3 mnths. I saved ea report. (I had to ask for copies.) I compared ea to the last.

I made up symptoms in between. Guilty. Don't tell anyone...

In '98 onc said, Everything's fine. Good, I replied. Just -- very slight, very very slight elevation in liver enzymes. I wouldn't worry. 3 mnths later same deal. I asked then, What could be causing that? Always consistently normal. Could be anything. The statins you take. Don't worry about it.

3 mnths later -- deja vous. AND I SAID, WELL I AM WORRIED AND I THINK I SHOULD HAVE A LIVER SONOGRAM. Okay, so it's an abdominal sono. Onc said he could justify that (for the insurance company).

Sono radiologist said he couldn't be sure what he was looking at. He apologized but had to send me for a CT. Waiting for CT results, my onc finally called and said there were some "abnormal" cells and I should come in w/my husband that afternoon. Paul left work early and picked me up.

Doc was shaken. Knew me since '95. Bottom line -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMOTHERAPY, FOR THE REST OF YOUR LIFE.

There were multiple tumors throughout my liver. Too many to count. My CA 27.29 was normal. And continued to be normal for mnths after.

The blood tests give you a window into what's going on. Be alert!! The slightest change -- you respond!!! That's my best advice.

Please read my WHY I TAKE SUPPLEMENTS thread and my WHEN THE MIND SPEAKS, THE BODY LISTENS thread.

I love you all, my Sisters. You are people. Not statistics. Don't let anyone forget that.

Andi
P.S. FYI -- In '99 after 9 mnths of Taxotere, I moved from ev 8 wk CTs (chest/abdomen/pelvis) to ev 3 mnths. For yrs...

Then I begged for ev 4 mnths, cause that drink gave me so much urgent bathroom drama I couldn't take it. Ok, said onc, but absolutely no longer than that. I remained at that for yrs and yrs.

I stayed on Herceptin for 10 years!!!!!!!!!! Been off Vit H for nearly 5 yrs. STABLE.

I was finally moved to CTs ev 6 mnths. And last yr -- to annual... !!!!!!!!!!!!!!!

04-08-2013, 06:30 PM	#12
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: No tests scheduled after chemo is finished. I hear every one of you Ladies!! Nodding. In '95 -- 4th stage, mastec, 2 out of 21 nodes involved, you can read my signature for details. In '96 after tx I was told, That's it. I asked, When do I have my next CT? No CT. Standard of care. Seriously??????????? I did get my full blood workup ev 3 mnths. I saved ea report. (I had to ask for copies.) I compared ea to the last. I made up symptoms in between. Guilty. Don't tell anyone... In '98 onc said, Everything's fine. Good, I replied. Just -- very slight, very very slight elevation in liver enzymes. I wouldn't worry. 3 mnths later same deal. I asked then, What could be causing that? Always consistently normal. Could be anything. The statins you take. Don't worry about it. 3 mnths later -- deja vous. AND I SAID, WELL I AM WORRIED AND I THINK I SHOULD HAVE A LIVER SONOGRAM. Okay, so it's an abdominal sono. Onc said he could justify that (for the insurance company). Sono radiologist said he couldn't be sure what he was looking at. He apologized but had to send me for a CT. Waiting for CT results, my onc finally called and said there were some "abnormal" cells and I should come in w/my husband that afternoon. Paul left work early and picked me up. Doc was shaken. Knew me since '95. Bottom line -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMOTHERAPY, FOR THE REST OF YOUR LIFE. There were multiple tumors throughout my liver. Too many to count. My CA 27.29 was normal. And continued to be normal for mnths after. The blood tests give you a window into what's going on. Be alert!! The slightest change -- you respond!!! That's my best advice. Please read my WHY I TAKE SUPPLEMENTS thread and my WHEN THE MIND SPEAKS, THE BODY LISTENS thread. I love you all, my Sisters. You are people. Not statistics. Don't let anyone forget that. Andi P.S. FYI -- In '99 after 9 mnths of Taxotere, I moved from ev 8 wk CTs (chest/abdomen/pelvis) to ev 3 mnths. For yrs... Then I begged for ev 4 mnths, cause that drink gave me so much urgent bathroom drama I couldn't take it. Ok, said onc, but absolutely no longer than that. I remained at that for yrs and yrs. I stayed on Herceptin for 10 years!!!!!!!!!! Been off Vit H for nearly 5 yrs. STABLE. I was finally moved to CTs ev 6 mnths. And last yr -- to annual... !!!!!!!!!!!!!!! __________________ 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...