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Old 11-10-2007, 07:19 AM   #1
mcgle
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No chemo, no herceptin and NO SIGN OF CANCER two years on!

Some of you may remember me posting about my rather anomalous HER2+ diagnosis (weakly FISH positive), strongly ER+/PR+ and with good prognostic indicators.

So I had surgery, rads and tamoxifen. For a long while I wondered whether I should have had chemo and herceptin.

Yesterday, I had my two-year post-op mammogram and ultrasound and heard those wonderful words, NO SIGN OF CANCER! I think I now have to start believing that receiving neither chemo nor herceptin was probably the right decision.

At last, I feel the cloud lifting ...

Mcgle (UK)
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Old 11-10-2007, 07:42 AM   #2
Becky
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Congratulations on reaching this important mile marker.
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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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Old 11-10-2007, 10:29 AM   #3
CLTann
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I made the same decision more than two years ago. The two year marker is very significant for us. After 24 months, the rate of recurrence will go down. Actually, for HER2 patients, the peak recurrence is around 12 to 16 months since the HER2 cancer is more aggressive. So, we do have a reason for celebration. Congratulation.
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 11-10-2007, 03:08 PM   #4
tricia keegan
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Congrats to you...I had chemo rads herceptin ..the works and still cancer free, so far, and appreciate each day I don't worry!!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-10-2007, 04:04 PM   #5
Chelee
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mcgle, Congratulations on being two years out and NED. I'm glad you finally feel the cloud lifting..that's half the battle. ENJOY!

Chelee
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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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Old 11-12-2007, 01:16 PM   #6
AlaskaAngel
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Thumbs up Day by day

Making choices is so darn difficult with this disease! Thanks for sharing the reality of the delightful news of your anniversary, and may there be many, many more!

AlaskaAngel
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Old 11-12-2007, 01:31 PM   #7
nitewind
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Can someone tell me if the two years out is two years after diagnosis or two years after all treatment?
thanks and hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-12-2007, 01:33 PM   #8
PinkGirl
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Smile dates

Nitewind,

I know this one, because Becky told me!

Your anniversary date is the date of your surgery.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 11-12-2007, 01:36 PM   #9
nitewind
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Thanks for the quick response pink! In that case I am 16 monthes out!
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-12-2007, 02:54 PM   #10
Hopeful
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Thumbs up

Congratulations, mcgle! I had herceptin but no chemo; now take an AI. The best advice I got was from my internist, who told me there was no right and wrong choices, to do the research, make the decision and not look back. It is good to see more of us in the "no chemo" camp reaching these milestones. Many, many more NED years to you!

Hopeful
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Old 11-12-2007, 07:29 PM   #11
Vanessa
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Congratulations on your good news!
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Old 11-12-2007, 07:44 PM   #12
Jean
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mcgle,
Wishing you congratulations on your 2 year anniversary! As I always say,
I wish you 2 X 2 X 22 more years....and then some.

Hugs,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 11-12-2007, 08:33 PM   #13
janet/FL
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Congratulations!
I turned down AC but did do Taxotere/Herceptin as soon as I could get it, which was about a year after diagnosis. I am now three years out and NED. So far so good. I know we all wonder about our choices and can only try to make those that seem right for ourselves. I do seem to be still experiencing, "chemo brain". Could be from current stress but I often feel as cloudy as I did on steroids and Taxotere. Perhaps less drugs would have been better? No one knows.
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Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 11-13-2007, 02:10 AM   #14
mcgle
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Thanks for your replies, ladies.

Chemo would have given me a 0.8% benefit, and herceptin another 0.8%. With those percentages, it made sense not to bombard my body with these treatments, but there was always that niggle ...

Our greatest friend is NED, and long may he be so!

Mcgle (UK)
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Old 11-15-2007, 03:06 PM   #15
Petesmom
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Smile

Congratulations! I also did not have chemo or hercepton and reached my 2 year mark back in March of this year. All the best to you.

Petesmom
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Old 11-15-2007, 07:53 PM   #16
StillHere
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I think Hopeful's doc has it right. There are no right or wrong treatments. In hind-sight I may have done things different, but you have to go with the information you have to work with at the time of your decision. Congrats on your anniversary! Wishing you and everyone one else here many, many more to come. Peace Karen
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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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Old 11-16-2007, 03:12 AM   #17
mcgle
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Thanks again.

Interesting that there are a fair few of us who escaped chemo / herceptin. I understand herceptin only really works if you are strongly HER2+, so it probably wouldn't have done for me.

Mcgle (UK)
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Old 11-16-2007, 05:01 AM   #18
jones7676
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Congratulations - I wish you 20 years or more of a cancerless state!
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Barb

10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 11-16-2007, 05:57 AM   #19
Hopeful
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mcgle,

I am about ready to leave for work so can't search for the studies right now, but there was some evidence presented at last year's San Antonio conference, I believe, that Herceptin was effective for a group of patients not strongly Her2+, which perplexed the researchers. When I get a chance, I'll add the link. Combined with the fact that there are women who are strongly Her2+ for whom Herceptin does not work, it just means that Her2+ isn't the be all and end all for who responds to Herceptin - there are other factors involved in response that remain undiscovered.

Here is a link to a NY Times article about it: http://www.nytimes.com/2007/06/12/he...0Topics/Tumors

Nonethless, you have done splendidly, and have every reason for optimism for your future.

Hopeful

Last edited by Hopeful; 11-16-2007 at 07:44 AM.. Reason: add link
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Old 11-16-2007, 08:00 AM   #20
mcgle
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Thank you, Hopeful. That makes fascinating, if confusing reading!

As you say, there are other factors, yet undiscovered, which must come into play.

Mcgle (UK)
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