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Old 03-13-2013, 02:20 PM   #1
lasarles
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Survivors

What do you consider to be your anniversary date? The day the beast was found? The day you were diagnosed?
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**********************************
05/2011 Mammogram - Clear
3/12/12 Found Lump Lt Breast (BSE).
3/13/12 44th Birthday, Mammogram, Ultrasound.
3/15/12 Needle Biopsy on Lump and Suspicious Node.
3/20/12 Dreadful "C" Word.
ER90% PR90% Her2+
1 cm, IDC, Stage 1, Grade 2
4/19/12 Portecath, Lumpectomy & Sentinel Node Removal. 0/4 Node Involvement...Yea!!
Margins Clear......Yea!!
5/17/12 Chemo Begins. TCH x 4.
Herceptin Weekly x 4, every 3 wks thereafter for 1 yr. Muga Scans every 3 mos.
8/13/12 Rads x 30
9/24/12 Start Tamoxifen
10/22/12 CT/Whole Body Bone Scan. No Cancer Detected......Yea!
1/31/13 Annual Mammogram and Ultrasound....NED....:)
5/23/13 Final Herceptin Appt
6/25/13 Port Removal
5/2017 Stop Tamoxifen Start Arimadex
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Old 03-13-2013, 03:28 PM   #2
tricia keegan
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Re: Survivors

I date it from my date of surgery but think we're all different in this.
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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 03-13-2013, 04:14 PM   #3
Becky
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Re: Survivors

I have always been told it is the date of surgery but I think it really is the date you start making all those appointments because you are not putting your head in the sand. You are doing something to survive and thrive again. You are preparing to kill the beast.
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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 14 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 03-13-2013, 04:38 PM   #4
chekmark
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Re: Survivors

For me I picked the day the cancer was successfully removed which was lumpectomy since they found no cancer at mastectomy. It was all pretty fast and close for me so either date is within a few weeks for me. I agree with Becky, we are survivors from day 1.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 03-13-2013, 07:32 PM   #5
Cannon
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Re: Survivors

I count the date I went to my dr, had the ultrasound & biopsy - cause I knew before the results came back. And then I also count the date of my surgery. They're both dates I won't forget. Count whatever makes sense to you!
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 03-13-2013, 10:32 PM   #6
JennyB
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Re: Survivors

I try to use the diagnosis date but I sadly often refer to my little boys date of birth/age as my benchmark as it is easy - I never forget when he ws born and I always seem to relate treatment mlestones to how old he was...... Like scans when he was 2 days old as couldn't have them before!
Anyway Survivor from the off for me so diagnosis was when I started fighting back!
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 03-14-2013, 11:31 AM   #7
snolan
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Re: Survivors

I used the date my Dr told me.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 03-14-2013, 11:16 PM   #8
SoCalGal
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Re: Survivors

I use the whole month. And the year too. As in, march 2013 is 17 years since my dx, April is 6 years STAGEfour.
:-)
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 most average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
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Old 03-15-2013, 06:52 PM   #9
Mary Jo
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Re: Survivors

I count from the day I was told..."you have breast cancer." It's been 7 years and 9 months ago. :-)
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"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

14Years NED

<>< Romans 8:28
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Old 03-15-2013, 09:22 PM   #10
suzan w
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Re: Survivors

Mastectomy date
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 03-16-2013, 09:05 AM   #11
SusanN
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Re: Survivors

This is interesting...as I'm "new" to this and REALLY appreciate ALL you gals!!!

To Snolan, I noticed you dealt with an infection after a mastectomy, I recently did as well...being very small breasted a now about a month out...WHEW, was that an ordeal...now finally healing...and getting ready very soon to take on my next chapter of chemo!
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Old 03-16-2013, 09:24 AM   #12
NanaJoni
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Re: Survivors

I use the date my dr told me my biopsy was positive for breast cancer. Not long after my diagnosis I was at our local American Cancer Society office looking at wigs. The wonderful lady who was helping me referred to me as a survivor and I said "I'm not a survivor yet - I haven't even started treatment." She replied - "The minute you decide to fight you are a survivor". And that's what I've used ever since. The minute that radiologist told me I had cancer, I was fighting. But the whole month of March is a struggle for me every year. 3/1-found a lump; 3/4 had biopsies and there were two lumps; 3/9-told I had cancer; 3/25-sentinel node biopsy all clear; 3/31-bilateral mastectomy. Dates I try to ignore but can't seem to stop letting them bother me. If it weren't for a couple of good dates in March -just celebrated our 42 wedding anniversary on 3/14 and a dear's friends birthday on the same day - I'd just hide under the bed the whole month.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 03-16-2013, 09:34 AM   #13
SusanN
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Re: Survivors

AMEN...way to persevere...congrats on 42 years!!

As to my port...praying I have a good go at it!!
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Old 03-16-2013, 04:42 PM   #14
CoolBreeze
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Re: Survivors

I don't use any date since I won't survive.

If anybody asks I might say "I've had cancer 4 years" but chemo brain keeps me from keeping track of these things anymore!
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-16-2013, 06:56 PM   #15
SusanN
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Re: Survivors

Keeping you in my prayers, because I believe we have a Mighty Physician!! Sending you Huge hugs!!!
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Old 03-16-2013, 07:29 PM   #16
europa
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Re: Survivors

For me it was when they performed my lumpectomy...11/11/11.
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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.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy

www.mychemobag.org
www.facebook.com/mychemobag

7 YEARS NED
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Old 03-16-2013, 07:50 PM   #17
Bunty
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Re: Survivors

I personally use around the date of initial diagnosis, but my onc uses the timing of when I finished rads and chemo - no more treatment, which is about six months after initial diagnosis.

Coolbreeze - I think everyday we are alive we are surviving, and of course every single person in the world at some point is not going to survive - not just us Stage IV gals! When I read your blog from time to time, it definitely seems to me that you are surviving each day. xx

Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
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Old 03-17-2013, 03:00 PM   #18
CoolBreeze
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Posts: 562
Re: Survivors

Bunty, of course, we all survive day-to-day and all of us will die. But, you don't ask people without cancer how long they've been a survivor, you ask them how old they are.

If you've read my blog, you know I don't like the term "survivor" (and many other cliches) when it comes to cancer as it ignores those of us who will die of the disease. It's part of the whole pinkwashing thing - those of us with mets are brushed away, ignored by the Pink Ribbon groups, because we are the ugly side of this disease, the failures. For them, it's all about survivorship, not women like me, who won't survive. You can't sell a pink flashlight if you put a dying woman on the packaging.

Even counting survivorship this way leaves us out. So, I say how long I've been living with cancer, not how long I've been a survivor, because cancer will kill me. I am not a "survivor" even though I am alive today.

I always look at that term in a political sense. Sorry, I know the question wasn't meant that way, just got on my pink horse for a minute.

Anyway, I'll jump off that horse now. I think, for those of you who want to count it this way, you get to choose. I have heard that it starts officially from the mastectomy/lumpectomy, when the cancer was removed and you are hopefully, cancer-free forever.

And, here's hoping everybody who reads this is cancer-free forever!
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-23-2013, 09:19 AM   #19
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Survivors CAN'T REMAIN MUTE

Don't lose your grip on the dreams of the past. You must fight just to keep them alive. It's "the eye of the tiger"...rising up to the challenge...The last known survivor stalks his prey in the night.

In the dark night of your fight you must never give up, my Sister. You have the skill to survive. Hold tight your will to survive. You are a Survivor. You've been through so much. I understand you feeling as you do. Still I applaud you. And urge you to not give up on Surviving. It can get better. I believe that. If you will begin to reach out and believe that!

Have you ever considered seeking alternatives to add or integrate with conventional medicine? The key is in the secret recipe which goes beyond the doctors' standard of care. I wouldn't be here without it all!

Supplements. Meditation. Trolling your thoughts for signs of negativity. I can see yours from here, Cool one. YOUR BODY LISTENS TO EVERYTHING YOU THINK, SAY OR WHISPER. IT'S JOB IS TO FOLLOW YOUR DIRECTIONS. IT HAS NO SENSE OF HUMOR. IT IS LITERAL. IF YOU SAY, I KNOW I AM GOING TO DIE, YOUR BODY WILL FULLFILL YOUR COMMAND.

At the first sign of I'M JUST AFRAID THAT..., I JUST "KNOW" THAT... (or even declaring that I AM LIVING WITH CANCER) -- those are explicit invitations to cancer to stay with you. Those ideas are heavy with defeat!

I may sound like a nut job to you, and that's fine if you think that, but I can't stop myself from trying to awaken you to what it is you are participating in (I believe completely unwittingly). So I wanted to alert you! Red flags are all over the place here.

I feel compelled to point out to you that toxic thoughts and the images they evoke are full of energy. You may believe you are simply being a realist. I see a realist drenched in negativity. Thoughts can create realities you may not truly desire. Or --they have the potential to assist you and your miraculous body to heal. It isn't easy. Gosh, I KNOW this well. But once you form the habit of recognizing negativity lurking in you, you have the power to consciously choose to immediately reject it -- and then the responsibility to replace it with chosen outcomes.

I've learned we must state what we want clearly and vividly. We must make our Intention and our Expectation completely clear. Because the energy of our thoughts and visions goes directly to our body as a distinct MESSAGE. And -- the vibrational quality of our thoughts and visions is sensed and also responded to by the Universe itself -- IN KIND. Negativity begets more of the same. Positivity calls positivity directly to you. What you give away returns to you. Love included.

You can participate in your own wellness. You must. Without you, all the surgery and chemotherapies in the world, all the brilliant docs and top nurses can't make you well.

I see you as a Survivor. I identify myself as a Survivor. Like any survivor of any great and mighty challenge, I can talk to a soldier or a Holocaust Survivor and we all but immediately find a bond.

In 1995, I'd gone for a mammo because there was this weirdness about my left breast (not a lump, never had a lump, not a pea or a marble). I felt the urgent need to move my mammo up. I felt a hardness the size of the palm of my hand and I could move it.

Instead of calling me in for additional pictures, as they sometimes did cause I had dense breasts, they said the Radiologist wanted me to have a sonogram. Right then. She came into the sono room obviously agitated. I didn't take it personally. She gooped the thing and ran it around and around, looking at the screen. Over and over and over. Very distressed. Still, I didn't get it. Thought she'd been having a bad day.

Get dressed and see me in my office. And she left. I dressed and followed. In her office her chest was heaving. She locked eyes with mine and told me I needed a breast surgeon. I had hypothesized that it was probably a cyst and might need surgery. I offered that. Her eyes still locked in mine, hands clasped or more aptly clenched together on her desk, she said, No! What you have is -- a pause -- a solid mass. Hervoice quivered. That was 5 o'clock on the Friday of Fourth of July weekend. She called a breast surgeon she highly recommended. The office was closed till Tuesday. She had a thought, I have his home phone number, Do you want me to call him for you? I nodded, unable to speak. I heard her explain my 9 cm tumor and details. Did she say tumor? Couldn't that be benign, I thought. Stunned.

The breast surgeon opened his darkened empty office on Saturday morning at 10 o'clock. After some discussion with me and my husband I heard my DH ask, How certain are you? Good question I thought. The doc thought it was breast cancer! He paused, shook his head side to side, calculating, leaned forward and said slowly, 99.9% certain.

Surgical biopsy confirmed that it was 100% malignant breast cancer, lobular. Mastectomy showed 2 out of 21 nodes involved. I had my mastectomy on July 14.

So I go by July 14 as the day I began my trek from 4th stage breast cancer to survival. I note it on my calendar each year and I celebrate that I am still here. I've been doing that all along, through my metastasis and the discovery of my HER2+ gene which wasn't even tested for in '95.

I did that when I had less than a 15% chance of surviving.

Deep down I know it started the Friday of the 4th of July weekend.

You are living with bc, Cool Lady but you are surviving with each day. And, with the help of your thinking, plus hopefully some serious meditation, the nurturing effect mantras have on your psyche and perhaps the addition of supplements you can take religiously as I do since '98 -- to get your immune system to kick into gear, to fight off, neutralize and down-regulate free radicals, to detoxify your liver, prevent cancer proliferation, rid your body of toxins, strengthen your heart and your bones -- you will come to see yourself and be a Survivor.

You are already a Warrior, a Shero with a strong will. You're a vital spark, a life force. Get in touch with the Spirit at your core, Breezy, and I pray you will find miraculous results. YOU ARE THE CAPTAIN OF YOUR SOUL. THE MASTER OF YOUR FATE. Take charge. Please.

With much love,

Andi
P.S. I HATE PINK TOO...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 03-23-2013, 09:49 AM   #20
jacqueline1102
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Join Date: Apr 2012
Posts: 175
Re: Survivors

Hi Andi,

I have to say I think you rock!!! I so appreciate how you reach out to others with your wisdom and energy. I sincerely mean that. Have a most wonderful day to you and all the people on this board. Your words have particular meaning as you have "been there, done that" as you know first hand the emotional impact of having breast cancer that then spreads to your liver. I think you should write a book!

Take good care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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