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02-27-2011, 06:47 AM
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#1
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Senior Member
Join Date: Oct 2010
Location: Perth Australia
Posts: 45
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Brain Mass
Hi everyone
Just got this news and trying to come to terms with DX. Any advice or encouragement would be so gratefully received.
Diane
__________________
adenocarcinoma ductal grade 3 DX Oct 2001 2mm grade111. Level one two out of four lymph nodes positive. ER strongly positive PR strongly positive HER2 staus not known. Chemo FEC six courses Radiotherapy course. Arimidex 5 years. Recurrence April 09 Liver, Lungs & Bones May 09 Liver Biopsy ER status changed to negative PR status changed to negative. HER2 now+++May09 Docetaxol 6 cycles Herceptin and Zometa added.Disease stable for 17 months Scans Jan 2011 one of the tumours in right lung has grown significantly scan due in April 2011 to check lung tumour. Current treatment Herceptin & Zometa February 2011 unwell so hospital. DX inoperable Brain mass 11x8mmx12mm left of midline. from lungs and heart March 2011 Gamma knife treatment to brain met.March2011Tykerb/Xeloda/Zometa
March 2011 Severe allergic reation to Tykerb July 2011 New met in lymph glandineck.July2011Navaline/Herceptin/Zometa
August 2011 Necrosis in brain
Herceptin/Zometa Oct 2011 considering Avastin for Necrosis
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02-27-2011, 09:51 AM
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#2
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: Brain Mass
Diane, I was so sorry to read your message this morning. I really am at a loss for words. I will pray for you Diane, and I hope there is something they can do to shrink the tumor. God bless you and I send my 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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02-27-2011, 10:54 AM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Brain Mass
Diane,
Please get a second, third opinion about the 'inoperable brain mass'. Can you get Tykerb? I'll be praying for you.
__________________
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; 02-28-2011 at 04:27 AM..
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02-27-2011, 01:07 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Brain Mass
Dear Diane -
I am sure there is a noninvasive form of radiosurgery that you can get. Look into Gamma Knife, Cyberknife and the IMRT type treatments.
They probably put you on a steroid already to bring down any inflammation associated with that mass.
This may lessen some of your symptoms.
Many of us here have been treated with the above "weapons" and are here to keep talking about it.
If you have to travel to a major cancer center it may open up more possible treatments and give you the best chance to win this one. (I realize you are in Perth, West Aussie, but there may be another center in that vacinity you could check in to.)
__________________
"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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02-27-2011, 02:55 PM
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#5
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Brain Mass
Diane,
I would agree with both Jackie and Steph.
I also had a brain met.
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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02-27-2011, 03:19 PM
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#6
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Brain Mass
Diane,
I am being treated for a brain met with the Gamma Knife for a mass that can't be operated on. They are saying the control rate (not growing bigger - is 98%) & 66% chance of shrinking. I am hoping for those results. There are other options besides surgery. See how well Joan and StephnN are doing.
Sending Hugs and Prayers your way,
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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02-27-2011, 06:33 PM
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#7
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: Brain Mass
Diane,
We hear the despair in your post. Another opinion, right away! There are so many options out there. Don't let the first doctor just right it off as "inoperable". That may be so, but drug combinations are worth the chance to shrink the tumor. We are cheering for you in the background and will support you with info as well as prayers and good wishes. Stay strong!
Hugs, Elizabeth
__________________
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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02-27-2011, 09:12 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Brain Mass
I am sorry to read your news. I never had a brain met, but I think the other members who replied before me gave you some excellent suggestions.
Hang in there !! Keep putting one foot in front of the other no matter what !! Take good care of yourself.
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02-28-2011, 12:18 AM
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#9
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Brain Mass
So sorry to hear the news. Do ask about targeted radiation. I think there is Gamma knife available in Sydney (Maquarie University private clinic and and a public hospital-will send info by private message).You can also ask about Tykerb which as you know crosses the blood brain barrier and is funded by PBS for use with Xeloda. Nowadays you can revert to Herceptin if Tykerb no longer works but the two are not funded together.
I do hope you are bearing up OK. Warmest regards,
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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03-04-2011, 07:13 AM
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#10
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Senior Member
Join Date: Oct 2010
Location: Perth Australia
Posts: 45
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Re: Brain Mass
Thanks ladies I am getting that second opinion from Macquarie Hospital in Sydney for gamma but the cost is $25000!!! Need to find out about a public hospital that might have the gamma. It may not be suitable for my tumour so might need linar. Awaiting anxiously appointment with Radiation oncologist in Perth on Tuesday. Have a list of questions so should no more after the appointment. Cannot start any more chemo for the other mets until radiation done, so still on Herceptin which no longer works for me. Trying to keep positive but this is devasting news especially after the birth of my fourth lovely Grandaughter. Hate this illness.
__________________
adenocarcinoma ductal grade 3 DX Oct 2001 2mm grade111. Level one two out of four lymph nodes positive. ER strongly positive PR strongly positive HER2 staus not known. Chemo FEC six courses Radiotherapy course. Arimidex 5 years. Recurrence April 09 Liver, Lungs & Bones May 09 Liver Biopsy ER status changed to negative PR status changed to negative. HER2 now+++May09 Docetaxol 6 cycles Herceptin and Zometa added.Disease stable for 17 months Scans Jan 2011 one of the tumours in right lung has grown significantly scan due in April 2011 to check lung tumour. Current treatment Herceptin & Zometa February 2011 unwell so hospital. DX inoperable Brain mass 11x8mmx12mm left of midline. from lungs and heart March 2011 Gamma knife treatment to brain met.March2011Tykerb/Xeloda/Zometa
March 2011 Severe allergic reation to Tykerb July 2011 New met in lymph glandineck.July2011Navaline/Herceptin/Zometa
August 2011 Necrosis in brain
Herceptin/Zometa Oct 2011 considering Avastin for Necrosis
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03-04-2011, 12:02 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: Brain Mass
Diane, I am so sorry this happened and I am praying for you. I hope you are able to get the treatment you need. 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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03-04-2011, 03:24 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Brain Mass
I'm so sorry Diane and hope you can find a public hospital that can treat this for you!
__________________
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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03-04-2011, 03:55 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Brain Mass
If you can't get Cyber, consider IMRT. It is the type of targeted high dose stereotactic radiation that I have had for my brain mets, one being 12mm as well. I have had very good results, equal to Cyber or Gamma. They are similar technologies with minor differences.
Here is where it is available in Sydney...
http://www.cancercare.org.au/www/htm...erapy-imrt.asp
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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03-04-2011, 11:55 PM
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#14
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Brain Mass
Diane
The Royal Prince Alfred Hospital in Sydney is a public hospital and they do stereotactic radiosurgery (not sure exactly what machines but I think they do have a frameless system-will send you their info sheet). The Peter Mac Callum Cancer Institiute here in Melbourne is also a public hospital and I am treated there as a private patient. They also do stereotactic surgery in some circumstances (1-3 at most brain mets) but don't have a frameless system.
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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03-08-2011, 07:42 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 157
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Re: Brain Mass
Diane,
Sorry I'm late to reply, and I'm so sorry for your news. I hope you will get the right treatment that will zap this met for good.
I also have brain mets, diagnosed this year, and I was treated with Xknife, a SRS similar to Gamma Knife.
I'm glad you are getting a second opinion, sometimes what is inoperable for one doctor is operable for another. Besides, your met is small, and probably any SRS will do the trick, I just hope you find a public hospital to do the procedure.
I know brain mets diagnosis is scary, but after you have a treatment plan, and start the real treatment, you will feel much better and more in control. Hang in there.
A big hug,
KarlaV.
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