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Old 11-24-2014, 07:03 AM   #1
thinkpositive
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What is measurement date for 5 yr mark?

My understanding is that the risk of recurrence is highest in the first 5 years. I'm wondering when this 5 year clock starts. Is it from the date of diagnosis, last chemo, last herceptin, surgery?

Thanks
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 11-24-2014, 09:00 AM   #2
Lauriesh
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Re: What is measurement date for 5 yr mark?

I always thought it was from date of diagnosis , but I was diagnosed with liver mets at 5 years, 4 months from diagnosis, so I would think I would use end of treatment date.

The imp thing to remember is that the risk is never zero, so it is imp to get any unexplained syptoms / pains checked out, no matter how many years it has been.

Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 11-24-2014, 09:37 AM   #3
'lizbeth
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Re: What is measurement date for 5 yr mark?

ThinkPos,

The trouble with that concern is that the "5 year recurrence" information is based on older treatments typically with surgery, then adjuvant treatment.

You have neoadjuvant with Perjeta with a good response. Since the data hasn't had time to develop - you are one of the pioneers in this grouping.

The closest information on recurrence is to look at group similar to your pathology. The 5 year (I think & should check) is for the ER+ group. The ER- was more likely to recur in the first 2 years of treatment, again based on older standard of care, before Perjeta.

I personally would count from the first treatment in August.
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Old 11-24-2014, 03:20 PM   #4
LeahM
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Re: What is measurement date for 5 yr mark?

My onc says from last Herceptin. I go by that.
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
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Old 11-24-2014, 05:36 PM   #5
Becky
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Re: What is measurement date for 5 yr mark?

And mine says date of surgery. Go figure?!
__________________
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
Zometa every 6 months for osteopenia

NED 13 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 11-24-2014, 06:13 PM   #6
'lizbeth
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Re: What is measurement date for 5 yr mark?

I like to celebrate, so I have the date of discovery, the date of diagnosis, the date of mastectomy, my NED day after the axillary node dissection.

However, I have not been celebrating the last day of Herceptin. I must add this, along with the final date of my vaccine trial and consume chocolate accordingly.
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Old 11-25-2014, 06:56 AM   #7
thinkpositive
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Re: What is measurement date for 5 yr mark?

Thanks everybody for your responses. No wonder I wasn't sure what the measurement date to use!. I asked my onc the other day and she said it was date of diagnosis. It seems that there isn't a definite date that is always used. Us HER2 folks are never completely "out of the woods" but I like Lizbeth's idea of celebrating each milestone along the way.

Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 11-25-2014, 11:41 AM   #8
europa
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Re: What is measurement date for 5 yr mark?

I was told within the first 3 years after your last Herceptin. For those that are strongly ER+, there is no range because they have seen recurrences 10-25 years later. This is what I was told.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.

www.mychemobag.org
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6 YEARS NED
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Old 11-30-2014, 06:44 PM   #9
caya
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Re: What is measurement date for 5 yr mark?

I am hopeful that with Herceptin use for early stagers, really only within the last 8 years or so, future studies will prove that even we triple+s will have a lower risk of recurrence as well.

I remember my onc. telling me in January 2007, when I started Herceptin, that I was basically a "pioneer", that I would be in the 10 year statistics 10 years hence (now going on 8 years). More so because I am triple +, and very highly ER/PR+. Of the 6 or so triple+ gals I know who started treatment around the same time as I did, all early stagers 1-3, no one has recurred. Hip hip hooray!!

all the best
caya
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ER100%+/PR 100%+/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
11 Years NED!!
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Old 12-01-2014, 07:29 AM   #10
thinkpositive
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Re: What is measurement date for 5 yr mark?

Caya,

That is great news. I guess us "pioneers" really don't have stats that we can refer to. The good news is that things seem to be improving all the time.

Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 12-03-2014, 04:35 PM   #11
tricia keegan
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Re: What is measurement date for 5 yr mark?

I agree with Caya, I was diagnosed in 2005 and had Herceptin for early stage and really hoping this is the "Cure" we're all waiting for, doing great so far.
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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
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 12-04-2014, 12:30 PM   #12
'lizbeth
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Re: What is measurement date for 5 yr mark?

Tricia - haven't you hung out with us long enough to realize "The Cure for cancer" is more like the "Cures for cancer". I hope you'll hang out long enough for the "Better Cure" for cancer that doesn't include chemotherapy, radiation or surgery!

Caya, that is awesome news. I love that you are cancer free 8 years later, and I love that 6 triple positives early stagers are still cancer free!
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Old 12-04-2014, 05:01 PM   #13
tricia keegan
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Re: What is measurement date for 5 yr mark?

Lol 'Lizbeth, I've been a member here since 2005, three years before you joined so really wasn't sure what your comments meant or if there was any meaning there at all??? I think we may have crossed wires here.
__________________
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
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 12-04-2014, 07:55 PM   #14
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Re: What is measurement date for 5 yr mark?

Tricia, we'll both soon be 10 year triple positives. I think that qualifies us as trailblazers!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
12 YEARS NED!
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Old 12-04-2014, 09:21 PM   #15
'lizbeth
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Re: What is measurement date for 5 yr mark?

Well Tricia, I think wires got crossed somewhere. Not sure what you meant by joining us in the thread and throwing in the "Cure" comment. Many women have recurred on or after Herceptin, were you referring to neoadjuvant Perjeta?

I don't really think it matters when we were diagnosed or joined the board. I just was truly surprised about the statement this is the "Cure" we're all waiting for.

Do I really want the next generation of breast cancer patients to go through the same treatments as us? Heck no! I want them to receive treatments that are even better.

So this is what I meant.
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Old 12-05-2014, 04:16 PM   #16
tricia keegan
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Re: What is measurement date for 5 yr mark?

Hell yes Sassy, we are the "Trailblazers " for sure!!!!

'Lizbeth, I was referring to the fact that Herceptin was only approved for early BC a week before many of us were dx in 2005, before that most prognosis for her2*** was one year so already to me and others here this miracle drug really comes close to THE cure and has given some of us many more years than we otherwise would not have had. It may possibly have cured us, that remains to be seen in years to come but we remain positive...( my response was primarily to Caya's comments and geared towards other early stage her2-ers)!
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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
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan

Last edited by tricia keegan; 12-05-2014 at 04:27 PM..
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Old 12-05-2014, 05:23 PM   #17
'lizbeth
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Re: What is measurement date for 5 yr mark?

Tricia,

It makes me very uncomfortable when a senior member of the board posts comments like you just made.

I checked Genentech's website and I learned that Herceptin was approved for early stage in 2005.

Then I went to the studies that Herceptin's approval was based on.

The 4 year Overall Survival with ACT was 85.6% compared to ACTH at 93%. So yes - it is a miracle drug for 6 women out of every 100.

Four year Disease Free Survival improved from 73.7% to 85.7%. That is a nice change.

Are you referring to the prognosis for Metastatic Breast Cancer perhaps?

I'm glad that you and Sassy are "Trailblazers" and happy about Herceptin.

But can you get your machetes back out and keep cutting new trails please.

I'd love to see us get to the same numbers with a combination of Perjeta and Herceptin and no chemo, or some other less toxic options.
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Old 12-05-2014, 05:25 PM   #18
'lizbeth
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Re: What is measurement date for 5 yr mark?

http://www.gene.com/media/product-in...pment-timeline

and this is the JCO article:

Four-Year Follow-Up of Trastuzumab Plus Adjuvant
Chemotherapy for Operable Human Epidermal Growth
Factor Receptor 2–Positive Breast Cancer: Joint Analysis of
Data From NCCTG N9831 and NSABP B-31
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Old 12-05-2014, 07:08 PM   #19
sassy
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Re: What is measurement date for 5 yr mark?

'lizbeth,

I profess to being baffled by your uncomfortableness with anything Tricia said, and also with your seeming agitation and need to strike out.

Herceptin was released for early stage in 2005---just in time for Tricia and I and many other women in our same boat to be treated. Undoubtedly that treatment played a large part in our almost 10 year disease free survival. So for us---it may very well be our "cure", a point my oncologist has made to me.

Is Tricia advocating that Herceptin is the cure for everyone---certainly not. A lot of advancement has been made in the last 10 years advancing survival rates for many more. Neither Tykerb nor Perjeta were available when I was in treatment.

Are any of us hoping that toxic treatments remain the standard of care--certainly not. Targeted therapy is much desirable over the slash and burn approach of the past.

Joe and Christine developed this website:

Philosophy
"Through a team effort, this unique support group seeks to promote education by maximizing the utilization of available resources. We promise to assist members by supporting their concerns and providing links to news and current research".
Christine H. Druther - MSPH
-Founder

Their mission was to above all support---hence the name HER2Support. The reference to "team effort" was also intentional. Joe especially made sure that all members adhered to the practice of respectful discourse. We continue to honor that legacy.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
12 YEARS NED!
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Old 12-06-2014, 02:26 PM   #20
'lizbeth
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Re: What is measurement date for 5 yr mark?

Sassy,

I feel that the senior board members should be accurate in the information that we share.

It is not true that early stage breast cancer patients had a one year prognosis before Herceptin. According to the studies that Herceptin was approved on 85% of women would still be alive 4 years later without Herceptin. 74% of women would have not recurred in 4 years without Herceptin. These numbers tell me that 3 of 4 women receive Herceptin without benefit compared to the standard of care at that time.

Most board members are quite familiar with my concern of advancing standard of care. I was not striking out or agitated. I was trying to be funny when I responded to Tricia. But if someone joins a thread with a confusing post, or puts out information about Her2 breast cancer that seems inaccurate - we should clarify it.

I am sure that Joe and Christine would expect you and Tricia to be respectful toward my concerns as well. This is a two way street.

Last edited by 'lizbeth; 12-06-2014 at 02:26 PM.. Reason: Clean up extra words
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