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Old 06-24-2008, 07:52 PM   #1
Emmay
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Brain Mets MRI shows great improvement

My sister has been on a new experimental therapy for bc brain mets of CPT-11 (a.k.a. Irinotecan) plus Avastin for 6 weeks (=two infusion sessions, not including yesterday's). Today's MRI showed remarkable improvement: the many large, bright areas from her previous MRI were dramatically diminished, some gone altogether.

She had said that her headaches were lessening noticeably, down to a short, slight twinge every 2-3 days, so we were cautiously hopeful, but were stunned when we reviewed today's scans. We'd never before seen such a large difference after just six weeks. My sister's neuro-oncologist said they are seeing good preliminary results with some other patients as well; it's difficult to know how much of the effect is a result of CPT-11 and how much from Avastin.

My sister's T-lymphocyte blood cell count is down, so yesterday she had an infusion of just Avastin and Herceptin (resuming after Tykerb failed for her); in two weeks she will resume CPT-11 & Avastin at a slightly lower dose, then continue on a 2-week cycle.

I'm happy to report this encouraging news, and will keep this board posted.

Emmay
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Old 06-24-2008, 08:15 PM   #2
lilyecuadorian
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great news ...
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 06-24-2008, 09:40 PM   #3
Faith in Him
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I am so happy that your sister is responding to this drug. Wonderful news.
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 06-24-2008, 10:15 PM   #4
ElaineM
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Brain Mets MRI shows great improvement

Wonderful news !! Fantastic !!
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 06-25-2008, 09:46 AM   #5
lexigirl
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Thank you for sharing her wonderful news!! That is really encouraging!! Give her a big hug from us!!

Lexi
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Old 06-25-2008, 01:20 PM   #6
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Emmay

Ah Sweetheart, we can never get enough encouraging stories. Keep 'em coming. Send big love to sis and let her know she will in our thoughts. Oh, I am so happy for her.......and for you too!!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 06-26-2008, 06:23 AM   #7
pattyz
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Hey Emmay!

Thanks for the 'head's up'!

This is just the greatest news, dear! Am so happy for your sister... and you!

hugs,
patty xoxo
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Old 06-26-2008, 09:44 AM   #8
DonnaD
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Emmay,
Finally some good news, just what we need.

Thank you for sharing your sisters fantastic results. Keep the information coming!
Donna
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Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 06-26-2008, 10:16 AM   #9
chrisy
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Wow, that's really great news! Thanks for sharing!
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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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Old 06-27-2008, 10:40 AM   #10
dee1969
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Exclamation I have new brain lesions- would love any more info you have

Hi- I am due a follow-up brain mri in 4 weeks, they suspect 2 new lesions, but are too small yet to radiate , so want to wait a month to rescan. I am very scared of a sudden onslaught of new brain mets. I got my initial, and only brain mets tumor radiated 15 mths ago and no new lesions appeared til now. I have just finished 2 rounds (6 mths each) of Abraxane in last 15mths. ( Mets to lungs. liver and kidneys- all stable except liver)I am on a 2 mth break. Am on Tykerb and Arimidex for now. I am frightened that Tykerb and Abraxane will no wonder work, as few other drugs get thru the blood brain barrier. Any new info or research leads would greatly help. I am 38 and getting very tired Many, many ,Thanks, D
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Old 06-27-2008, 02:34 PM   #11
ElaineM
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Brain Mets MRI shows great improvement

Hang in there. Keep putting one foot in front of the other.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 06-29-2008, 06:47 PM   #12
Emmay
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Hi Dee1969,

I am sorry to hear that your dr. suspects 2 new brain mets, but if they are in fact mets, it's good that they are small and easily treated with Stereotactic RadioSurgery. You don't mention how long you've been on Tykerb -- it's been effective for some Her2+ women with bc mets to the brain (since it crosses the blood-brain barrier) so if you've just started it, maybe you want to give it a little more time.

If you have been on Tykerb for a while and it turns out there are 2 new lesions, Temodar and/or Temodar plus Xeloda is being used for bc brain mets effectively with some women(look up PattyZ's posts). My sister was on Temodar+Sorafenib (an anti-angiogenesis agent similar to Avastin) and it worked very well for a while, but she was steadily losing too much weight (due to diarrhea - not everyone has this problem) so she had to switch. Before that, she was treated effectively for several years with Cyberknife RadioSurgery for brain mets as they appeared, usually 2-3 small lesions at a time.

If you are very worried about suddenly having many brain mets, there's also the possibility of Whole Brain Radiation, but there are mixed feelings about that treatment - some in favor, some opposed. You should be sure to read through the Metastasis - Brain CNS section on this site. Also, check out brainmetsbc.org.

You still have options. My sister has been through many treatments, and we were told before she started the CPT-11(Irinotecan)+Avastin treatment that we would be in somewhat uncharted territory. We are very happy that her lesions showed rapid shrinkage - however her white blood cell count dropped and she is being followed closely - they are trying to define the fine line between maximum effectiveness and toxicity in her dosage.

I wish you the very best.

Emmay
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Emmay - My sister's history:
6/03 Her2+,ER-PR-Breast Cancer, IIb, 7/03 lumpec. rt.brst
9/03 Begin chemo-AC+T
2/04 Mastectomy for local recurrence
3/04 Begin Herceptin, 5/04 Rad to mastec.site
9/04 Recurring Headaches=brain mets
10/04 Craniotomy #1 - rem. 3 br. mets, 11/04 WBR
2/05 Begin Lapatinib(Tykerb) Clinical Trial
5/05 Craniotomy #2 - remove largest brain mets
7/05 Stereotactic Radiation to 2-3 brain mets
10/05 - 3/07 CyberKnife Radiation Treatments for sm brain mets as they arose. Cont. Herceptin
5/07 Begin Temodar+Sorafenib for brain mets
2/08 Begin Tykerb(Lapatinib)+Xeloda for br. mets
5/08 MRI&Biopsy shows ext.new disease, some necrosis
5/08 Begin CPT-11(Irinotecan)+Avastin for br.mets
6/08-4/09 MRIs look great! cont. Herceptin
3/09 Stop CPT-11, brain CTclear-some nausea,backpain
4/09 Scans=pleura,liver,bone mets.
New Rx Herceptin+Avastin+Xeloda
6/09 new Rx Carboplatin+Herceptin
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Old 07-05-2008, 03:38 PM   #13
dee1969
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Thankyou Emmay

Hi Emmay, Thankyou for your long and descriptive email, it is so reassuring to read ( and re-read). A lot of us are in unchartered territory and your sister especially is a Pioneer. I will take all her details of recent drugs and share with my doctors. Thankyou very much again Emmay. Your sister is in my thoughts; i look forward to reading more about her. I will post any relevant news i find for you both. Best wishes, keep strong, Dee
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