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02-13-2016, 11:27 AM
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#1
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Senior Member
Join Date: Oct 2011
Posts: 59
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Re: Calling all stage iv sisters
I haven't posted here in a long time, but wanted to check in to give hope where I can. I need to update my signature, as my latest scan (Jan) still shows all is stable for me. I have been on Herceptin and daily Tykerb since May 2012, when I stopped my hard chemo. My doctor has never had a patient stable on this regime this long, so we are in uncharted waters. Wonderful, blessed, smooth waters. When I was diagnosed in 2011, stage 4 From the start, my second child was three months old and I didn't know if I'd live long enough for him to know me. I know longer just hope, I believe. We are not statistics and there is life beyond this diagnosis. Hugs to all my sisters.
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)
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02-13-2016, 05:55 PM
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#2
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Senior Member
Join Date: Oct 2008
Posts: 41
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Re: Calling all stage iv sisters
I'm so happy for you.
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02-13-2016, 07:47 PM
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#3
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Member
Join Date: Aug 2015
Location: Miami, FL
Posts: 19
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Re: Calling all stage iv sisters
I was diagnosed May 2015, Stage IV from the outset with a few small spots on my liver. I had a large (6cm) tumor on my right breast and a bunch of hot lymph nodes in my right arm. Started THP in June 2015, scans in August 2015 showed all cancer activity had resolved. Started H&P every 3 weeks in October 2015, just had tumor markers in February 2016 - all normal. Onc says no scans for 3-6 months. I feel pretty good, work full time (stressful right now), run first thing in the morning every day. I drink no alcohol the week of treatment, but I drink two glasses of red wine the two weeks between treatment!
I had lymphedema in my right arm as a symptom of breast cancer, and see a lymphedema PT every week. It is well controlled.
HER2+++, ERneg, PR < 5% (negative for all intents and purposes). I choose to believe that there are so many treatments for HER2+, and so many in the pipeline (including vaccines), that we can manage this as a chronic disease rather than a terminal one.
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June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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02-25-2016, 04:36 PM
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#4
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Senior Member
Join Date: Mar 2011
Posts: 70
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Re: Calling all stage iv sisters
Jackie,
Appendicitis!!! Praise the Lord! That's great news!!
Diana
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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02-27-2016, 11:32 PM
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#5
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: Calling all stage iv sisters
Awesome news Jackie! Makes me smile :-)
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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03-03-2016, 11:42 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Calling all stage iv sisters
O oh ...
Went to the Patient Information porter of the Hospital website and saw 'liver cancer' on the list of all my ailments. Guess what the biopsy found was not a metastasis, but primary liver cancer! I imagine the result of the appendix surgery is going to be the same (primary appendiceal cancer). The oncology surgeon is going on vacation for two weeks. She's going to see me again Monday and probably will get another surgeon to remove/biopsy the appendix for me. The brain specialist who's going to review my anuual MRI Friday [taken before noon] afternoon refused to move the appointment, so the (this past) Wednesday surgery plan she had had in mind fell through.
I finally realized the urgency... On the hospital patient chart site there's a 'liver cancer' on my list now. Guess it's a primary liver cancer. I think the two new cancer probably were caused by the flea poison exposure last spring. (SIL put 10 times the recommended dose on the drive way and patio before she'd left FIL's house. When we arrived a couple of hours later, a mother cat and two babies were dead by the ramp in front of the entrance of the house, lying right by the poisonous powders! I spent about half an hour to dispose all the poison and ended up lying in bed the whole next week.
People who have the desire to 'kill' are having issues inside ... Somehow I've always had the [bad] luck to be around them...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 03-03-2016 at 11:50 PM..
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