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02-15-2011, 03:55 PM
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#1
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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A little speck of not so bad news (maybe)
As you know I was told Friday that I might 'have a couple of years'. Had the weekend to come to terms with that. So, saw my oncologist today (the chief oncologist, had different one last Friday). He showed me the scan of my brain and said 'you have too specks, very very small'. I asked if I was considered terminal now and he said no!! My lung has completely cleared and he thinks wbr and gemzar will fix the brain 'specks' (my new fabourite word), and the skin/chest. So I left feeling a lot better than I had last Friday. Am still taking it one day at a time and am hoping be here a little longer. Courtney, I asked about your trial but he said he would not consider it just yet - but he did say if I get any more brain mets then cyberknife will be an option.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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02-15-2011, 04:46 PM
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#2
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: A little speck of not so bad news (maybe)
Delaney,
I am glad your news got better. It's such a roller coaster ride. I have been on it for the last 3 weeks too. Please stay positive and hopeful. Your stats look pretty darn good. Specs; that doesn't sound like much to me.
Sending you hugs and prayers,
Kris.....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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02-15-2011, 04:48 PM
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#3
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: A little speck of not so bad news (maybe)
So glad to hear that things are looking up, Delaney. Do not lose hope, dear one. Two specks should be very, very easy to treat. Is there anyway you can get targeted radiation to these spots instead of WBR? Any chance you could travel outside the country to get this done?
Don't let the doctors put an expiration date on your head. They have no way of knowing how long you will live. New drugs are being developed every day. Vaccines, radiation, gene therapy, etc. There is so much hope for us HER2 gals. There will be something to get you to NED, I know it.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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02-15-2011, 05:45 PM
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#4
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: A little speck of not so bad news (maybe)
Delaney
Do they really need to do WBR? I would have thought "specks" suggests you are are a good candidate for targeted radiation. If they are intent on WBR can they spare the limbic system? Read a good article about radiation which I will try again (was unsuccessful on my last attempt) to post in Articles of Interest. That is fantastic news about skin and lung mets. Plenty of reason to hope.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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02-15-2011, 06:25 PM
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#5
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: A little speck of not so bad news (maybe)
Specks.....I'm with you, that is a beautiful word! Now on to gone! Celebrate this good news.
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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02-15-2011, 07:18 PM
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#6
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: A little speck of not so bad news (maybe)
I was wondering about the WBR for just 2 small specks, too. It seems like a lot of radiation to healthy tissue to zap 2 small specks. Research time for you, I think. Our poor brains are beleaguered enough.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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02-15-2011, 09:08 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: A little speck of not so bad news (maybe)
I like the doctor you saw today better than the one you saw last week.
Hopefully the new therapies will take care of all your little specks.
By the way, I came across something you might want to read about photodynamic therapy and breast cancer skin or chest wall mets.
http://clinicaltrials.gov/ct2/show/NCT00862901
Take care. |
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02-15-2011, 10:46 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 157
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Re: A little speck of not so bad news (maybe)
Hi, Delaney,
I'm glad you are feeling more under control, and that your lungs are clear.
Nobody can predict how long you have to live, neither the doctors.
I also have brain mets, but mine are not specks, and I did not have WBR, I think it should be saved for later. Since you have just 2 specks, you should try to zap them with target therapy SRS, like Gamma Knife, Xknife, Cyberknife, Novalis, etc. My first radiation oncologist wanted me to do WBR, but I refused, I wanted surgery, but I ended up having Xknife. Do your research, you have time. Suggest your doctor to do Cyberknife now for the 2 specks, and WBR if there are a lot more specks in the future.
I hope and pray you make the right decision. Hang in there.
Hugs,
KarLa V.
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02-16-2011, 11:33 AM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: A little speck of not so bad news (maybe)
Much more promising news than last week, in view of the specks being so small maybe they'd reconsider the WBR for something less invasive even if it means travelling if not available here?
What a difference a Dr with differing views can make! 
__________________
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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02-16-2011, 01:52 PM
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#10
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: A little speck of not so bad news (maybe)
Delaney, I am so glad to hear things are looking better.
Kris, I am glad things are going well for you too.
Amelia
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02-16-2011, 03:20 PM
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#11
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: A little speck of not so bad news (maybe)
Delaney, I was so happy to read you post today. Yes, I like this onc better than the other one. I have not had to deal with this, as of now, but there are people on this site that will be able to guide you in the right direction. I am so happy that you were given hope. HOPE is what we all need and I wish you the very best. I will be praying for you. Best Wishes, Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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02-17-2011, 04:56 AM
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#12
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: A little speck of not so bad news (maybe)
Delaney,
I am so glad the whole picture has turned around. I did not know how to answer your last thread when you were feeling so down about having to have radation treatment of the brain. Our brain is a very 'fluid' organ. Since we don't use but 3-5% of all of our brain cells, plus the fact that those neurons can reconnect and form new routes (brain plasticity) - we can bounce back from the treatment if we work on it (physical exercise + mental exercise + nutrition)
I think the whole brain radiation has the benefit of eradicating the 'unseen' specks hidden in the dark. But if you use Gamma-knife or Cyberknife, you can always do another one when new 'specks' show up.
__________________
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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02-17-2011, 06:56 AM
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#13
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Member
Join Date: Aug 2010
Posts: 7
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Re: A little speck of not so bad news (maybe)
Hi Delaney,
Never give up. Sounds like really good news. Heres a link you may be interested in. Sounds like you dont need it now coz the Gemzar will get your specks....Anyway here it is I would always go for Cyberknife over WBR.......Londons not far from Ireland after all......
http://www.thelondongammaknifecentre.com/
__________________
Flossie
Jan 2006 DX large lump in armpit. 2 x 5mm tumors in left breast.
FEC for 6 cycles
Aug 2006 Mastectomy + Herceptin 1 yr + Tamoxifen.
Aug 2007 Lat Dorsi Reconstruction + Tamoxifen
Aug 2008 3cm brain met gamma knife +mets in rib and neck 5 x RT/Herceptin/Arimidex/Clodronate.
Apr 2009 11 mets Gamma Knife/Capecitibine/Tykerb
Mar 2010 3 mets Gamma Knife/Zometa/Femara/Tykerb
Mar 2010 Pet Scan all clear continue Tykerb
Aug 2010 12 mets + Zometa/Femara/Tykerb
Jan 2010 5 Years!!
Mar 2010 - Gamma Knife 7 mets
Aug 2010 - Gamma Knife 12 mets
Jan 2011 - 6 Years!
Mar 2011 - Gamma Knife
Mar 2011 - Taxotere
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02-17-2011, 08:27 AM
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#14
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Junior Member
Join Date: Feb 2011
Location: Toronto, Canada
Posts: 1
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Re: A little speck of not so bad news (maybe)
Hi Delaney,
This is the first time I have posted anything on this site or any for that matter. I read your note and all the subsequent comments by other women - you all seem to be so knowleageable about breast cancer and so positive too! What would you suggest so I too can understand all these medical terms (and their implications)? I received my not so good pathology report (subsequent to a right bi- lateral mastectomy and lymph node removal) only last Friday and although I understand some of it - grade 3; stage 2; ER- PR-; Herr2 positive; primary tumor 1.6 cm; 2/22 lymph nodes positive for cancer, there seems to be so much more I should know...
Thak you,
Lisa
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02-17-2011, 07:11 PM
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#15
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: A little speck of not so bad news (maybe)
Welcome Lisa. I am not the most knowledgeable about this site but there is a Newcomers section( I can't even get the terminolgy right) but I think the purpose of posting there is to ensure you get welcomed properly. I never did post there but I am just picking things up as I go along. I'm not quite sure which bits of your report you don't understand so can't be much help there but do keep posting. Good luck with your treatment.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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