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07-30-2007, 12:47 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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Concerned
I had a catscan on Saturday and was supposed to see my doctor tomorrow for the results. Her office called today and cancelled my appointment and they are going to schedule a petscan for Thursday, which probably means that they found something on the catscan. I was hoping that I would get to stop chemo and just continue with Herceptin.
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07-30-2007, 01:37 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Vanessa
I am hoping that they just want to double check something that looks odd...and hoping it is nothing. You are in my prayers that all will be well and you can go back to just Herceptin and save your energy for those 2 wonderful grandchildren.
Sending you a big hug
__________________
"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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07-30-2007, 03:10 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Vanessa,
I'm praying that nothing showed up on the scan and as Sheila said, they just want to double check. Perhaps the equipment was not working properly the day you had the scan. Sending nothing but positive thoughts your way.
__________________
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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07-30-2007, 04:47 PM
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#4
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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maybe...
they can't believe the CT cause it is great news and want a PET to check it out! Just trying to think positively and hoping things are in the right direction.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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07-30-2007, 04:58 PM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 78
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Waiting can be so difficult. On the one hand, it's good your doctor ordered the additional scan so quickly, rather than going in to his office, and then possibly facing a delay to get the second test. The doc probably wants to have all the info before meeting with you so he can fully answer all your questions. Sometimes the medical professionals fail to take into consideration how a rescheduled appt can add to our stress level, especially when you didn't get the results of the first test. Secondly, many of us like to know the reasons behind a doctor's decisions so we can start gathering info and thinking of questions to ask at the next appt.
If waiting to talk to the doctor is causing you more anxiety, could you talk to him on the phone and ask why he is ordering this second test?
Hoping the time passes quickly for you and that you'll have good news.
__________________
G. Ann
DX 2/04, mastectomy, 2.5 cm tumor, grade 3
Her 2 positive, 60%, 3+/strong, ER/PR-
Stage 2, 0/18 nodes
TX 4 AC (no taxanes, no radiation)
Hysterectomy 10/04
Began Herceptin 1/06, finished 1/07
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07-30-2007, 05:04 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Dear vanessa,
I know the natural reaction is to assume the worst - but you don't KNOW this. Breathe in, breathe out. I'm also sending you big hugs and prayers and hopes for the best. I like Joy's.
Take care
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-30-2007, 07:03 PM
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#7
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Sending hugs to you Vanessa. Waiting is SOOOOO awful. Fear of he unknown is SOOOOOOO awful too.
I'm sorry you have to go through this too. Like the others have said, maybe it's nothing at all. Just a "make sure of something" type scan. Like Joy said, maybe you could call and ask "why?" they are doing the PET.
Holding you close in prayer.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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07-30-2007, 07:26 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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I'm hoping that they are just being super careful and that it will be nothing! Thinking good thoughts for you. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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07-30-2007, 07:52 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I know that it is scary but your onc may just see that some of your "tumors" look really funny and she might think they are dying and wants to confirm that with a PET (as "living" tumor is what lights up and a CATscan (CT) is really just a sophisticated Xray). She may just want to see if it lights up or not and if it does, is the lighted up part smaller.
Its a shame she didn't tell you why she was doing the PET. Good or bad, its better than waiting it out and speculating. However, it might really not be bad but just trying to distinguish necrosis versus tumor so she can really say if something is shrinking or not.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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07-30-2007, 08:25 PM
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#10
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi Vanessa, There have been times when a new test has been ordered where I've dreamed up dire reasons that have no basis in reality. The quickest resolution is to call onc and find out his reasoning. You might not like the answer but there's no reason for you to hang in limbo. I think sometimes they don't give us all the info to spare us anxiety, but for some of us, no info equals anxiety.
Best of luck, Bev
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07-30-2007, 08:35 PM
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#11
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Thanks for all of the support. My doctor wanted to do a petscan initially, but my insurance wouldn't pay for it. They wanted me to do a catscan first. That is what has me scared, because I think the only way she could get my insurance to approve a petscan is if my catscan had some suspicions. Anyway, when they call me tomorrow to actually tell me when my petscan is approved, I will try to get more information. I was sure hoping to get a break from chemo. Thanks again for your thoughts and prayers.
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07-30-2007, 09:36 PM
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#12
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Vanessa, I'll be thinking about you tomorrow. The insurance game is so frustrating. It could be she has to "play" their game just to get the PET scan to comfirm shrinkage, not progression. I'm thinking positive, but I know how anxious this is making you. Let us know if you find anything out.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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07-31-2007, 04:55 AM
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#13
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Good luck Vanessa. It is probably nothing - if they wanted a PET scan they may well just be looking for the tiniest unclear thing on the CT scan to play the insurance game and get you the best scans they can. Hoping it all turns out fine for you. Bxxx
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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