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10-07-2007, 07:17 PM
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#1
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Call from my doctor
Today, I got a call from my doctor. (Yes, I know it is Sunday). She asked me to be at her office at 9:00am. She stated that she has not seen the results of my MRI, but that we would look at the results together. She also told me to take 2 Decadrons this afternoon and one before I go to bed. She also ask me to bring someone to the appointment with me. Does anyone have any ideas of what to make of that? I am extremely nervous now, even though she said she has not seen the results of the MRI. Remember, it was done late Friday afternoon. I cannot figure out why she would want me to take the Decadron. Again, any ideas?
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10-07-2007, 07:35 PM
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#2
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Vanessa, I can only assume your oncol wants to start you on a treatment tomorrow that will need a predose of prednisone. Please take her advise and take someone with you so there are two people taking in and digesting the info she has for you. As hard as it will be, please try to rest tonight and not worry about tomorrow until tomorrow. I will be watching for your post tomorrow. Take Care, and sleep well. We need restive sleep to help us heal. Peace Karen
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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10-07-2007, 08:17 PM
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#3
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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If she fibbed about the MRI, tell her you'd appreciate that she discontinue the fibbing practice. I know they curb some of the info to keep us sane, but I don't think that works while prescribing premeds.
If you're the kind of person that wants to know everything, tell the onc that's what you want from here on out. I haven't decided yet if I want to know everything so I let my onc slide when it comes to exact numbers on tests etc. (then I ask the nurse ever so casually)
Very mysterious. I hope there's some sort of benign explanation. I know who's not sleeping well tonight. Keep us posted. Bev
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10-07-2007, 08:18 PM
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#4
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Senior Member
Join Date: Aug 2007
Location: Silicon Valley, CA
Posts: 76
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scary to wait to hear what your doc has to say...
Hi, Vanessa -
It's such an anxious time - waiting for results...
When I had some similar symptoms - not falling, but loss of balance and dizziness - my oncologist also sent me for a brain MRI, and then called me into his office on short notice.
In my case, it turned out that the culprit was a fairly large (robin's egg- sized) bcmet tumor in my cerebellum (balance center). It had grown from nothing to that size in only 10 months, and was too big at that point for stereotactic radiation surgery (SRS - CyberKnife). It was near the surface of my skull, and fortunately, it was encapsulated, and the entire met was removed surgically.
I still have occasional balance/vertigo problems, but am in physical therapy and am almost back to normal, almost 2.5 years later.
I have no idea if your situation is going to be similar to mine, or very different. In your shoes, I'd be very anxious, too - and, in fact, I get anxious over scan results in general, each and every time, whether the doctors' concern gives me the jitters or not.
That your doc told you to take some Decadron before she sees you may indicate that she thinks there's there might be swelling in your brain, that she wants to control - but maybe not.
Just writing to let you know that there's someone out here who's been through the agonizing wait, imagining, and then received bad news, and got through it. I hope that your news tomorrow is much better than what you might be imagining!
Whatever you find out tomorrow, I'm pulling for you to make a full recovery, and to be able to hold that baby granddaughter in your arms with confidence - no more falls!
(((hugs)))
Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...
"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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10-07-2007, 08:49 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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It sounds to me, too, like she has either a treatment in mind or another test or scan of some type... and if so, that could be why she needs you to bring someone with you. She might just be acting from an abundance of caution. The fact that you have fallen may worry her and she might think that you shouldn't be driving yourself anywhere until she finds the cause of the falls. I am not predicting that you will see anything on the scan, but when we found mine, they were tiny (5 pin pricks and two smaller than 9 mm), my onc and rads onc both told me that by law they had to advise me that I was not supposed to be behind the wheel of a car with known brain metastasis. I know this is agonizing, and it would be silly to suggest for you not to worry. But, please don't worry, at least not too much.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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10-07-2007, 09:03 PM
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#6
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Vaneessa put everything and God hands ....and try to sleep and tomorrow go to your doc ..just thinking the worst that can be is maybe something really small with a lot of solutions ..and what about if only are some precautions or is nothing and we all worried ....let wait until tomorrow ...i know is hard but we need to hear all this good things that sister said all the times ....are excellent when our faith is low ...so keep it up and show yourself your strengh
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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10-08-2007, 12:01 AM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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My experience
Dear Vanessa -
I had just written a response and a Google update just wiped it out!
My feeling is that this news does not bode well for a clean scan. My med onc was calling me before I even got home when my MRI showed mets.
He had not actually seen the scan but had a call from the radiologist who read my MRI that something showed and I should immediately start the decadron. This was because I had some diffuse inflammation and they want to start curbing this right away. Any treatment will cause more inflammation, except Tykerb.
The practice is that the radiologist calls the med oncs if there is something new or tumors are enlarging so they can act quickly and get the patient back in.
My best thoughts go with you to this important appt. You may not see this reply until you get home, as it is late on the west coast.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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10-08-2007, 03:50 AM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Vanessa
You are in my prayers that the scan will be fine, but if not, be thankful it has been caught early. Sending a big hug and lots of love.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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10-08-2007, 05:05 AM
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#9
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Dear Vanessa,
I am sorry you have to go through this waiting, even for one night. It is early Mon. morning and you are in many "sisters" thoughts and prayers. Trust you Dr. Remember we are all fighters. You have two wonderful new grand babies to watch grow up.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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10-08-2007, 05:13 AM
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#10
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Dear Vanessa,
I am so sorry that you are having to go through such an agonizing wait. My thoughts and prayers are with you that all turns out well.
Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED
"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."
-Eleanor Roosevelt
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10-08-2007, 05:52 AM
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#11
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Senior Member
Join Date: Oct 2005
Posts: 215
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Dear Vanessa, hoping and praying for the best results. Hang in there, hugs, Jeanette
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10-08-2007, 06:48 AM
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#12
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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No zzzzzzzzzz's
Hi Vanessa,
Was up at 4 am and could not sleep and I bet you were up as well. Should have had some instant message going to you to share prayers !! Big hugs ! These wonderful gals have you full of knowledge and what to expect but most important....full of power coming your way.
Hugs, Bonnie
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10-08-2007, 08:54 AM
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#13
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Vanessa,
I know how scary not knowing is. It sounds like you are in good hands and your docs have a plan of action ready to go, whatever the results are showing. Hold tight! NED is on its way!
Hugs and Prayers,
Lexi
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10-08-2007, 09:01 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Thinking of you
Vanessa, and hoping you're doing alright...keep us posted...we're all thinking of you.
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10-08-2007, 09:02 AM
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#15
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Senior Member
Join Date: Nov 2006
Posts: 42
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Thinking about you and sending prayers for strength....
__________________
Susie Q - North San Diego
Diagnosis at Age 41 on 10/6/06
~3cm Invasive Ductal Carcinoma Left Breast Stage II
~ER+ 45% Moderate ~ PR+ 62% Strong
~HER2/neu +++
~Sentinel Node Biopsy - Negative Four Nodes
~BRAC1/BRAC2 Negative
~Neo-adjuvant Chemo:6 rounds-every Three
Weeks of Taxotere & Carboplatin & Herceptin
Weekly Completed on 2/7/2007
~Lumpectomy (after chemo) 3/12/2007
~Switched to Every 3-week Herceptin 3/21/2007 for nine more months.
~Radiation May through June 2007 (35 rads total)
~Hormone therapy Lupron Injections + Arimidex
~Lymphedema Challenged!
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10-08-2007, 09:10 AM
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#16
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Senior Member
Join Date: Aug 2006
Posts: 492
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Oh, I just saw this Vanessa. I am so sorry your onc called you on a Sunday. Tell her if she was trying not to stress you out, it didn't work!!
Argghhh. Be strong and know we are all routing for you!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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10-08-2007, 09:49 AM
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#17
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Senior Member
Join Date: Jan 2007
Posts: 368
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She may have gotten a call from the radiologist that read the MRI, and is trying to give some advance warning.
I know the only time I received a call to come in before the doctor's office even opened, was when I was told the outcome of my biopsy. The radiologist had called my doctor at night, at her home and informed her.
I hope for the best outcome for you.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-08-2007, 09:54 AM
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#18
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Vanessa,
I too would be concerned if I got a call from my oncologist on a Sunday - not to mention to take Decadron and bring someone with you Monday morning. I'm hoping that it just means that she has a treatment plan that she wants to discuss with you and that someone should be there simply because of your falling episodes. Please let us know what happens. You're in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-08-2007, 10:58 AM
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#19
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Vanessa ~
I was so worried when I read your message about falling down and was hoping it was chemo related. Just as so many others said I know that you were not able to sleep last night....what an agonizing wait. I wish there was more we could for you. I'm hoping for the best.
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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10-08-2007, 11:05 AM
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#20
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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Vanessa,
I'm thinking of you today, along with everyone else here, and am sending you cyber hugs and prayers. Please let us know how it goes with the doctor today...
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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