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08-31-2011, 09:03 AM
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#1
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Really bad Brain MRI
Hi All
I had a brain MRI two days ago and this time the results were fast proberley due to the fact it was not good.
Anyway the results are two new small tumors progression in all other tumors almost as large as when i started. There is a lot of white matter on old tumors (narcosis?). And edema around one and also pushing ventricle over.
I meet with my onc today. Yesterday i had a full body pet scan and i find out those results to day. I am so scared.
The only reason i saw my onc was to get a clearance to fly and now this. He says maybe if nothing else in my body we would go ahead with the gamma knife (cost a lot and I fly to Honolulu) At this stage I'm not sure. He did put the fear in me about radiation narcosis. Don't know what else to do.
I'm trying to stay strong but there are a lot of tears. And I can't sleep again.
Sorry to sound so flat.
luv to all
Jacqui xx
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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08-31-2011, 09:25 AM
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#2
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Senior Member
Join Date: Aug 2011
Posts: 51
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Re: Really bad Brain MRI
Hi kiwigirl, I'm so sorry to hear so bad news. But look there is still hope, as many others users much wiser and more experienced than me will tell you. Looking at the history of your tumor it seem that you are elegible for tyverb, a fairly new drugs that targets Her2. It works very well on her2 + breast cancer. And what's more it is a small enough molecule able to pass through the brain membrane, so it's very effective on brain metastasis as well. There is a lot of therapies you can try out. I'm new on this forum, but I'm sure that senior members will comfirm my words. So don't loose hope, keep figthing, though its seems so hard and daunting.
Kykeon
__________________
Son of Ha
She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130
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08-31-2011, 09:59 AM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Really bad Brain MRI
I am so sorry to read your latest news. I would ask the oncologist for the Tykerb in addition to the Gamma Knife or other radiation techniques you are considering. Tykerb is known to pass the blood brain barrier and may help shrink the brain mets. Tykerb is in pill form, so you won't miss any treatments if you start it before your trip. You can continue to take your daily dose no matter where you are in the world.
I hope the latest news won't interfere with your trip.
I don't know what arrangements you have made with the radiologists for gamma knife in Hawaii or which medical center you are planning to visit for the gamma knife treatment. You might want to consult them or have your latest test results faxed to them before you arrive, so they can prepare for your visit.
You might also enjoy a change in the climate since you are probably experiencing winter while we are in the middle of summer.
Take good care of yourself.
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08-31-2011, 11:58 AM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Really bad Brain MRI
Just wanted to add my support. Your anxiety is understandable. Have you considered taking some anti-anxiety medication to help get through these difficult days? And nights.
As others have said, hopefully some of the more experienced among us will be along to offer practical suggestions. I just wanted to say "keep the faith". Difficult as it may seem right now.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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08-31-2011, 12:30 PM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Really bad Brain MRI
Jacqui,
Gamma-knife is very effective in treating brain mets. I think it is good news that all the tumors that had been treated did not show progression. Several members have had to 'zap' new growths once or twice. GKRS is also quite safe.
Sending you good vibes.
__________________
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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08-31-2011, 01:05 PM
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#6
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Really bad Brain MRI
Adding my support. Others here know much more about this subject than I do. I agree with Bonnie about the anxiety meds.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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08-31-2011, 02:18 PM
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#7
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: Really bad Brain MRI
Thanks guys anxiety meds sound like a good idea. Sorry Jackie but there has been progession in all my tumors. Almost back to original size.
I feel a bit stronger today I've been booked already for the gamma knife centre of Hawaii. That is for the 9th of September. I'm going to call the oncologist that Elaine sugested. Thank you Elaine.
Its strange but i don't feel the way I did last time my mets grew.
Hoping for no decadron. If there is anything I need to do for Gamma knife can you please let me know.
Jacqui xx
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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08-31-2011, 03:16 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Really bad Brain MRI
Targeted radiation (which sounds like your plan w/ Gamma Knife) and starting a systemic treatment such as Tykerb/Xeloda would be a strong suggestion to talk to your oncologist about. You need something to cross the blood brain barrier and continue to help knock those brain mets back. It worked very well on my brain mets and on keeping everything below the neck in good order. Best wishes and let us know what your PET results are.
__________________
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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08-31-2011, 05:49 PM
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#9
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Senior Member
Join Date: Oct 2010
Location: Perth Australia
Posts: 45
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Re: Really bad Brain MRI
Hi Jacqui
What can I say you poor girl. So glad you are going for Gamma knife mine was very successful but I have developed necrosis which is very rare with Gamma & unfortunate so my right side is affected causing me problems but at least no progression in the brain. Other tumours stable at the moment. Gamma is quite straight forward and easy so dont worry about that and they can zap them all. They will give you an MRI of the brain when you are there. Sorry but you will need steriods for a bit.
Looking forward to hearing some good news soon on your Pet scan.
Lots of love to you all.
Diane
XXX
__________________
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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08-31-2011, 06:46 PM
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#10
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Really bad Brain MRI
Good luck Jaqui. Thinking of you as you make your way through this set back.
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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08-31-2011, 08:10 PM
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#11
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: Really bad Brain MRI
Good luck Jacqui and I will be thinking of you as you travel on the 9th!
__________________
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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08-31-2011, 08:12 PM
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#12
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Really bad Brain MRI
Good Luck Jacqui - I can't add much as I am too much of a newbie to this but it seems the ladies here have some good advice and suggestions.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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08-31-2011, 10:32 PM
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#13
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Really bad Brain MRI
Gods blessings to you and your family. I will keep you in my prayers!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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09-01-2011, 04:58 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Really bad Brain MRI
Jacqui -
I am pulling for you and praying that the gamma will wipe out all the tumors and you'll be free of them. Will be waiting to hear more. Pam
__________________
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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09-01-2011, 08:51 AM
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#15
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Senior Member
Join Date: May 2009
Posts: 510
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Re: Really bad Brain MRI
Jacqui,
So sorry to hear this news. Wish I could fly to Hawaii and give you a big hug. I'll be thinking of you and hoping for a successful treatment to come your way.
Love,
Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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09-01-2011, 12:05 PM
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#16
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: Really bad Brain MRI
Hi All
I really want to thank you all for you help. Its been a huge week. My Pet scan was really good all clear from head down. BUT i had had bone mets in my collar bone and spine. For some reason these have died and the bones are healing. The pet scan showed this but my ct did not.
Anyway they have pulled my certificate to fly I have to much edema and they don't want me to go. I'm not on Decadron yet but thinks i will need it two to three weeks. I'm going to try a higher does of boswella first.
So now i have to cancel all my bookings and my poor girls don't get there trip they have been really, really been looking forward to.
I also changed Onc yesterday and found one who will put me on tykerb and xeloda. This is not in our system yet so I'll have to pay. My Radiation Onc did work at Dana Ferber for a while and once i track him down is very good. He is to concerned about all of my edema and narcosis for gamma.
Thank you, thank you, thank you all for so much help luv and support prey's you are a great team and i really do thank you.
For now i sit at home and wait and try to stop these dam growths.
Luv
Jacqui xx
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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09-01-2011, 02:20 PM
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#17
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Really bad Brain MRI
I am sorry you have to cancel your travel plans, but I am glad your body is okay from the neck down. Tykerb is a good drug. It is supposed to cross the blood brain barrier, so I will keep my fingers crossed that it will wipe out some of those trouble makers in your brain. I think there is some information about applying for financial help from drug companies on the front page of our website. If not I am sure the topic has been discussed. Perhaps you can apply for help to pay for the Tykerb or your doctor can help you get a small supply of Tykerb samples.
Maybe you can travel after you get the edema down.
Take good care of yourself.
Last edited by ElaineM; 09-01-2011 at 02:23 PM..
Reason: addition
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09-01-2011, 08:37 PM
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#18
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Really bad Brain MRI
You might could call GSK's Commitment to Access... just ask questions and see if they have any suggestions how you can access Tykerb affordably as a patient in New Zealand. 866-265-6491
http://www.commitmenttoaccess.com/
__________________
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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09-02-2011, 02:16 PM
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#19
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Really bad Brain MRI
Just wanted to give you a cyber (((hug))) and tell you I'm rooting for ya.
Wishing you the very best,
Paula
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09-02-2011, 02:25 PM
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#20
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Really bad Brain MRI
Good luck. I think they always make things worse when they tell you about 'potential' side effects. If you were to read the list iboprufen side effects you would be scared. Lots of people had gamma knife on this site this is the best treatment you can have for brain met shoot them all and hold on tight on onto the rocky road, i feel your pain, breathe deep. also I use sleeping tablets i figured that it is worth it.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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