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04-09-2010, 03:34 PM
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#21
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: not good news
I'm sorry for your news Pam, but hope the xeloda will push those numbers down for you as it did before 
__________________
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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04-09-2010, 05:02 PM
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#22
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: not good news
Pam,
You are so often on my mind and in my prayers. I am sorry you got that news. You are a WARRIOR! This will be the magic combo. Kick this cancer's rear back into NED land.
I am here cheering you on!!
Love,
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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04-09-2010, 06:13 PM
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#23
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: not good news
Pam keeping you in my prayers and hoping the new regimen will get those markers down!
Hugs,Marcia
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04-09-2010, 07:08 PM
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#24
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: not good news
Pam,
I wish I could say something that would make this all go away. All I want to say is that you are an amazing woman and I know you will push through this too! Sending you a big hug and praying for better news to come!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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04-10-2010, 10:59 AM
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#25
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: not good news
Pam
Sending you strength to go through all these treatments
and prayers that they will send you numbers down this
time.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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04-10-2010, 02:10 PM
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#26
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: not good news
Pam,
I can only imagine the fear, frustration and all the other emotions you are dealing with right now. My heart goes out to you. I really think that adding chemo into the mix might be the magic bullet to knock those markers back down. Just know that I will be keeping you in my thoughts and prayers for a good response. Sending you a really big hug, & wishing I could do so much more.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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04-10-2010, 04:52 PM
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#27
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: not good news
Sending you love and prayers Pam.
__________________
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
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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04-11-2010, 09:57 AM
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#28
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: not good news
Hi Pam,
I am sorry to hear your news but I think I can relate a bit. I just spent a few weeks feeling really down and depressed about the failure of TDM1. It is such a loss when a treatment begins to fail or fails all together. We are pushed off of the ledge and on to the unknown... again and again. It seems like we are either trending in the right direction or the wrong direction, over and over again... but it never gets any easier.
I hope that you find Xeloda to be easier for you this time and I am going to take your tip on the hand and foot stuff you mention. I just started Doxil on Friday and I understand I may need all the help I can get with HF.
You are in my thoughts and prayers.
Love, Hope, Peace, Carolyn
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04-11-2010, 01:24 PM
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#29
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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Re: not good news
Pam, I hope all goes well with you with xeloda in the mix. I also had terrible hands while I was on that with Tykerb. You really have to take every precaution so you don't get it or keep it to a minimal. No pressure, rubbing, hot water, harsh soaps. I'm sure you know the ropes. It's so hard to deal with all the side effects, physically and mentally. Stay strong. Sally
__________________
Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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04-11-2010, 08:18 PM
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#30
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: not good news
You have my thoughts and prayers, Pam!
__________________
For Nicola
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04-12-2010, 04:06 AM
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#31
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: not good news
Good Morning Pam....Praying for you this morning.......asking God to be with you and help you as you deal with this road block along your journey. Praying that the new drug does the trick and that His peace surrounds you and holds you close. Also asking Him to not allow the side effects you experienced previously! Sending love and hugs to you friend.
Mary Jo
__________________
"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
17 Years NED
<>< Romans 8:28
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04-12-2010, 05:24 AM
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#32
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: not good news
Thank you all for your good thoughts and prayers --- they mean so much. I'm waiting to get my xeloda through mail order pharmacy that's how I have to do it with my insurance. Maybe by mid week it will be here..... then here I go hopefully smashing c cells into oblivion.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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04-12-2010, 04:32 PM
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#33
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: not good news
Yeah! Smash those c cells into oblivion!
__________________
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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04-12-2010, 05:27 PM
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#34
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: not good news
I'm glad you're feeling well - and that waiting a few extra days will just give you extra energy. Hoping this will turn things back in the right direction and sending gentle hugs.
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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04-12-2010, 08:34 PM
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#35
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: not good news
Pam,
I'm praying that the Xeloda kicks in like before to bring down the markers to normal.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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04-13-2010, 03:54 AM
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#36
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: not good news
Also praying that xeloda does a good job for you and that the side effects are minimal. I think of you every day and will continue to send you positive thoughts
Hugs
Ellie
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04-13-2010, 12:03 PM
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#37
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: not good news
Dear Pam -
I can see that you have a lot of fight left in you, and you are prepared for the Xeloda when it arrives.
Ask your body to 100% accept the drug and all it can do against the cancer. This is also my prayer for you.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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04-15-2010, 05:59 AM
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#38
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: not good news
Pam -
I would strongly recommend you buy one of my favorite books and it comes with a CD to overview the book - so you can just pop it into the CD player (even in the car!) but it really helped me understand how we need to give our bodies the right food when taking our drug cocktails. It is a fabulous book - easy to understand with many really great recommendations and also combinations to help those on chemo deal and still give their bodies what they are craving. It really helped me and I am digesting the "core" of the book now reading daily on it. (I've listened to the CD probably 6 times!)
Also sending you some websites and other books - but this one is a good starter I think for you.
Few of my favorite sites with loads of information:
http://www.i-amperfectlyhealthy.com/index.html
http://www.cancerfightingstrategies.com/index.html
http://www.carcinomacancer.org/cance...ph-factor.html
www.drday.com
http://www.cancerrd.com/
www.livingfoodsinstitute.com
http://cancermonitor.blogspot.com/20...reatments.html
http://www.creativehealthinstitute.com/wheat_grass.htm
http://www.healthquarters.org/
www.gerson.org
Favorite Books: (note I bought all these 1/2 price - or discounted from Amazon.com --- and then friends and family brought them to me in Italy!)
The "Cancer Battle Plan Sourcebook" (this is the updated version he has two Cancer Battleplans so make sure you get the SOURCEBOOK) by David Frahm
Crazy Sexy Cancer Survivor – by Kris Carr (this will make you laugh and even cry but I love her sassy attitude and her overall approach to fighting cancer moving forward!)
Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS (also comes with a great CD - overview of his book that is great for the car or to get a feel for the book in general)
Eat to Live – by Joel Fuhrman, MD
The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM
A Cancer Therapy – Results of Fifty Cases – by Max Gerson, MD
(if you haven't heard of Max Gerson - read up on him --- if I ever have cancer try to come back I will go on his diet - even more strict than what I am doing now - he also juices every hour .... its intense but I feel it really does work! Impressive stuff and very interesting! Worth reading!)
HANG IN THERE!
Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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04-15-2010, 06:02 AM
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#39
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: not good news
Pam,
Just wanted to let you know I have been thinking about you. Hope you have a great day.
Let us know how you are doing.
Amelia
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