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04-06-2007, 05:15 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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I Don't Quite Glow In The Dark Yet...
So, they need to do ANOTHER test where radioactive material is injected into my body for the benefit of some high tech camera!
As I shared with you last week, I got a "bad" CT report, showing progression to my liver and possibly my spine. I went to my regular onc yesterdayand I finally actually saw the report (then drove up to UCSF to see my other onc!), and it was pretty crazy and a busy day.
On Tuesday I had a bone scan to clarify the issue with the spine and that showed (TA DA) NO metastasis to the bone. Just a little degenerative change in a completely different area of the spine. So now I'm a degenerate.
But it gets even better (or just crazier). Another comment on the report was "the left lobe of the liver appears to be absent". Excuse me?! It was there when I went in! So now, it is I rather than the "lesion" that is suspicious.
The plan if the bone scan was negative was to get further testing on the liver spot. My UCSF onc concurred with this, and now I have a PET/CT scheduled for next Tuesday. I hope Tuesday is my lucky day again and the PET/CT shows that my left lobe is present and the cancer is gone, instead of the other way around. I won't get results of that until the following week.
In the meantime, I'm sort of dancing between my wonderful local onc and my UCSF rockstar onc, all waiting to figure out what really is going on so we can move forward accordingly.
Right now, the plan is IF the scan is negative (although that is a very outside possibility), stay the course and continue on Herceptin. Which would be a good thing.
IF the scan shows recurrence in the liver, I will likely go into a PhaseII trial of Tykerb/Avastin, which Dr. Rugo at USCF believes would be a good opportunity for me. So also a good thing under the circumstances.
Anyway, I continue in limbo. It reminded me of Tom's mom and others who have had false positives and other crazy things. I can say one thing, I don't think I want to go back to the imaging center of the bodysnatchers any more!
In the meantime, since I've never had a PET/CT before, I think I'll go back and read all about how to do that right.
Much love to all,
Happy Easter
__________________
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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04-06-2007, 05:48 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Happy Easter to you too Chrisy. I am getting a good feeling about the Night of the Missing Liver Snatchers. I'll stay tuned.
Love to you
__________________
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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04-06-2007, 05:53 PM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Wow Chrissy, I'd say you had a crazy day BUT it sounded very encouraging. Sounds as if things are better than you first thought?
I've had 2 PET/CT scans and they are a piece of cake. They gave me valium before them so you relax as there is a lot of waiting and the test takes a while SO I was flying higher than a kite and felt like I didn't have a care in the world. For someone who never takes ANY meds (unless it's chemo and trust me I fought that also BUT the onc. won) I rather enjoyed the feeling. I thought of asking if I could take any of those "happy pills" home. KIDDING!
I'll pray for nothing but SUPER DUPER results.
Happy Easter to you also,
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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04-06-2007, 07:15 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Oh Chrisy, you're just wonderful! Let's see, how do we pray for this one? Happy Easter and happy glowing! mary anne
__________________
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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04-06-2007, 08:32 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Chrisy, I'd say things are definitely looking up! It's awesome that you have the two oncs to share opinions. I am so happy that there is no bone mets! Yesss!! Perhaps no new liver activity, double yess!!!
I hope you have a wonderful Easter.
Hugs,
Lexi
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04-06-2007, 08:55 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Chrisy, Things are sounding better all the time. In my first post to you about this I said its probably a degenerative changes going on. I have some in my back. In time..we all get some. With age we all start slowly falling apart. lol I hope the PET/CT gives you all the answers you need once and for all. I say you get the ALL CLEAR. 
Keeping you in my thoughts and prayers. Hang in there!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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04-07-2007, 09:33 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Chelee,
When I saw your post on the other thread about the degneration in the spine, it reminded me that on a prior CT they had mentioned this - and at that moment I actually refused to claim that what was showing up on this CT was anything worse than that!
Thanks for the encouragement - you were right!
__________________
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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04-07-2007, 10:28 AM
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#8
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Hi Chrisy,
So far this week you have copped to being a Santa Cruzian on the cusp of new age thought and a suspicious degenerate! And here all this time I have admired you so! You really make me laugh and your posts are always great reads.
Maybe the Easter Bunny will bring you back your liver absolutely clear - maybe he was out cleaning it up for you and that's why it didn't show up and it's all brand spanking new now.
Seriously, I wish you the best and I am sending you positive thoughts and prayers - covering all bases :-)
Best to You Crisy!
Donna
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04-07-2007, 01:45 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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From On Degenerate To Another
You are too funny Chris -
I laughed when I read your post about the missing liver lobe. Dont you just love those radiologist reports. In my last scan I lost a tumor which I really dont know to this date if its still there or GONE....since I could not get a good report from this radiologist..... I SWITCHED IMAGING CENTERS to say the least.
Good luck to you on Tuesday. We will both need luck that day as that is the day I get my results from my 3 months scans since last time.
HAVE A VERY HAPPY EASTER
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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04-07-2007, 02:57 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Chrisy, This is one time I am very happy I was right about something. I had the same thing turn up in my back a few years ago...so it was on my mind...and I do know how *common* it is for all of us as we age. I figured your odds of degenrative chances were pretty good. I am so thrilled for you. (Sorry about your back though.) I will continue to keep you in my thoughts and prayers for your up-coming scans.
Sending all positive thoughts, energy, and much good news to come your way.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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04-08-2007, 08:42 AM
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#11
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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i know all of this isn't really funny but...
CHRISY I just had to laugh ( and thank you for the laugh by the way). I am hoping and manifesting for you that the PET/CT debunks any other nonsense and that things are beautiful in there. And that you are all there, you degenerate you! I thank you also for reminding us that even though imaging studies are the gold standard of follow-up for us stage IV-ers they don't always show what is real. It felt like the right thing to read on a day of rebirth, new thoughts and reminders of the victorious spirit.
love and good wishes to you!
__________________
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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04-08-2007, 04:34 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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I'll be interested in hearing your update on this. I have visions of one of those urban legends where you wake up and you were an organ donor without your consent, ha!
Strange thing to hear, probably just a blip in the interpretation. Hope your scans continue to show clear.
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04-08-2007, 06:10 PM
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#13
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Chrissy,
UCSF is where I had the left lobe of my liver resected. Maybe it was my CT report they were reading!!!
Seriously, just hope your next scan is clear. I sure know what you mean about having to do more radioactive cocktails! The CT/PET scan just felt like having a regular CT, no big Whoop...
Nice to hear you are seeing someone as sharp as Dr. Rugo!
Keeping my fingers crossed for clear scans for you. Kim in CA
PS I've had some of those degenerate changes in my spine give me a scare too.
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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04-08-2007, 06:40 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hi Chrisy,
Wishing you all the best for continued good scan results and back to the NED dance ASAP.
All the best
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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