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Old 08-22-2009, 02:04 AM   #2
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Update please on Joy

Found her last posting on April 26 from the Members List. There's no e-mail address for her.

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It is funny how quickly we can gain a habit. At least this is a healthy one. Every wednesday, once i realize it is wednesday-you know how that is-i hope, I kick it in for all of us.

I have been missing everyone and thinking about so many of you and following your updates.

I would like to share mine as I am very scared and sad. I have been on Tykerb and Herceptin for 6 weeks ish. Both of which I have been on before and had progression, but never had combined the two.

In the meantime I have not been feeling well. My whole torso feels tight and uncomfortable and sharp pains plague it frequently. I have rationalized it to be so many other things, but today's vist to the onc confirmed, at least by physical exam, what i was fearing. My liver is very swollen. Digestion is weird (full too fast, nothing sets right). We don't know 100% if it is irritated or mets freaking out or what. Markers had come down and then went up a little and enzymes did the same. They have all been worse, but it is the wrong direction. Bilirubin is good and A/G is a smidge low.

So, this is yet another treatment that has not worked. Epirubicin/Cytoxan worked, but we are hesitaant to go there again so quickly. I think that I am no longer her2 pos and that is why DM-1 failed and herc/tyk maybe failing. I am scared, scared, scared. Scared that no treatment is going to work any more, scared that I will never feel well again, scared that just when everything else in my life is exactly where I have always wanted it, that i will be taken.

Any thoughts or success stories after liver swelling would be SO appreciated. Tips or tricks for taking care of this are also very appreciated. I eat a lot of organic produce and grains-a little ice cream now and again-I'm only human. I have been supplementing with:

Milk Thistle
Fish/Krill Oil
Reishi
D
cal/mag
probiotics
lecithan
B's
just adding IP-6 again now
and adding Shitake/Maitake too

would really like to add Vodka today, but probably not a good idea

So Eric, Caryn, Sheila, Gemma, Irene, Marie, Ed and everyone who needs parayers or not-I am sending them with tremendous love and admiration.
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
__________________
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
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