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Old 03-14-2010, 02:20 AM   #1
Adriana Mangus
Senior Member
 
Join Date: May 2006
Location: California
Posts: 668
Re: Roller-coaster

Hi Jackie.

So sorry. I don't know what to say. Beautiful letter from hubby.

Love,

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 03-14-2010, 04:02 PM   #2
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Roller-coaster

Thanks, Adriana. How are you doing?

I am about completely recovered from my hysterectomy/oophorectomy now. In the past ten days, we have been walking twice to the water fall located in the middle of the new walking/biking trail built by the city . The water fall was beautiful and and the walk relaxing, though the one hour round trip tires me out. Most people park their car in front of a local Internet/computer company. We might try that next time to trim 10-15 minutes off our walk.

We are (I am)going to check with my doctors about the vaginal atrophy issue. Hubby has finally made me understand the frustration he has had being just 52 and hasn't had the 'real' thing for almost 7 years. I had tried a low dose estrogen cream January last year after seeing a gynecologist. But I was soon scared off after feeling a 'bump' on my chest. It had turned out (after biopsy) to be the 'clip' (inserted during the mastectomy as a 'marker')that was pushed up against the muscle/skin. My surgeon said that most people couldn't feel it at all. I think I am just very skinny and very sensitive.

It's really a roller-coaster ride with huge ups and downs.
I'm fortunate to have very strong family ties and feel quite secure - the worst senario will be for me to go home stay with my parents in Taiwan (They have a live-in housekeeper and my 5 siblings all want me to take it easy...) Hubby is stuck with the situation - he can't take a job because he's needed by both his Father and me. And there's hardly any suitable/flexible jobs available in this rural area.

Really appreciated your message. We have made some progress - will make it a project to paint our garage door and clean up the study/fix the tiles in the bathroom before my niece's visit 2, 3 weeks from now. She's my oldest Brother's daughter - she has an older brother who's on his way to England for graduate school. I stayed with her family briefly while in college around the time when she was born. Everyone says that she takes after me - mainly her 'giggling' and her temperament, and her 'tiny' teeth. She's going to fly (from Taipai, Taiwan) to New Mexico, spend a few days there and then fly to either Dallas or San Antonio (because MTrack does not have a direct connection to our town.) Her plan is to travel 10 states in three months by train. How wonderful it is to be young! We think she inherited the adventuous spirit from her Grandmom, her Father, and her Little Auntie...

I have just received a check of the 'back payment' from the Social Security Administration. Though the amount was small, the approval of my 'disability' status has given both of us a sigh of relief and some vindication. Hubby had suspected (he couldn't help it) that I was purposely trying to torture him (with my memory problem) and that I was fired from all the jobs because I wouldn't get along with people at work (again because of my memory problem.)

Last couple of weeks I've got connected with some college alumni through the Association Chapter in Southern California. Though I reside in Texas, they wanted me to write something about my 'cancer-fighting' story. I was complimented by the editor on both my English writing and Chinese composition skills. How nice! I'm going to write more often. It's therapeutic...

Mostly, people just like to know how I am able to keep a positive attitude, maintain a vibrant spirit, and stay happy during the long, rough journey. Well, one thing I know - besides being well-influenced by my Mother and having a strong belif system and a supportive spouse - is that I've got this wonderful Her2-support family here. Joe and Christine have done something so extraordinarily wonderful for all of us, I think they deserve a Congressional Medal.

Thanks again. You've caught me in a good (up) day!
__________________
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; 03-14-2010 at 05:46 PM..
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