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01-22-2011, 07:56 AM
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#1
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Need your Help/Advice - Got Dx with Brain Met
Hi ladies;
This week I started to have double vision when laying down. Unfortunately, I just got a call at 9am today they found a lesion on the brain stem/cerebellum size 1.6cm x 1.7cm.
Don't know what they are recommending to do but if any/all of you can lend your advice, I would greatly appreciate it.
I'll be spending my weekend reading posts here to get myself educated for Monday's visit with the Oncologist.
( : ... big disappointment needless to say. It also excludes me from finishing the Vaccine Trial. (:
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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01-22-2011, 08:34 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: Need your Help/Advice - Got Dx with Brain Met
Kris, I am so sorry that you have to go through this. It is a BIG disappointment!!! I havn't gone through this but I know all the others who have will be sending you advice and support. I will be paraying 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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01-22-2011, 09:26 AM
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#3
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris, my heart is sinking reading your post. Just a few days ago you were by my side supporting me with kind words and encouragements. I am sure many wonderful women here will help you with their own experience but I know how you feel. May our doctors work faster. Sending hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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01-22-2011, 10:10 AM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris, I am offering my support to you - I'm sure some of our members with brain mets will be able to give you suggestions and advice.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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01-22-2011, 12:50 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Need your Help/Advice - Got Dx with Brain Met
Dear Kris -
Feel bad for your situation, and see you took quick steps. Did you have a brain MRI?
You seem to be picking yourself up and dusting yourself off in short order. That is what is good about this site.
It is sort of a shock at first to see that other BC patients REALLY DO have progression of their disease, but then to follow them down their new path can be very enlightening.
That is how it happened for me, because another member here had posted her stereotactical brain treatment in great detail.
I had the treatment info - just needed to get a grip on the fact that is was actually happening to ME.
It is my prayer that you will have just the one spot and that it is treatable by radiation means.
__________________
"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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01-22-2011, 01:27 PM
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#6
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris
I have no experience with this at all. I am sorry that you have yet another struggle. There are many here who've experienced excellent outcomes. Please keep the faith. Thinking of you,
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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01-22-2011, 02:20 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Need your Help/Advice - Got Dx with Brain Met
Hi Kris,
My thoughts are with you. It's upsetting to receive this news. I heard it 7 years ago this coming May. I assume that you will be treated with targeted radiation. You will not find this treatment too difficult, but I can understand that you are upset about not continuing the vaccine trial. It is likely that this brain met was seeded before your treatment begin. I have confidence that you will be fine after treatment, and will have the opportunity at some point to enter another vaccine trial.
Thinking of you!
Barbara H.
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01-22-2011, 02:28 PM
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#8
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Need your Help/Advice - Got Dx with Brain Met
Thank you all for posting your words of encouragement and suggestions. To StephN; yes I had a brain MRI and they faxed me the report this afternoon. My oncologist is away this weekend so I'll have to wait til Monday. Based on the report, it is only one lesion -- 1.4 x 1.6 x 1.9cm involving the right cerebellar peduncle; base of the brain. I really don't understand everything but it looks like that's the only place and there's a lot of nos, unremarkables, normals describng other parts of the brain and tumor type, so maybe that's promising.
Your encouragement and successes gives me to strength to fight this one off too. I only wish that I had a longer time before recurrence but those are the cards that have been dealt to me. You have all been a true safety net; there's always someone who knows what to do.
THANK YOU ALL; keep 'em coming on advice. I really appreciate it.
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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01-22-2011, 02:54 PM
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#9
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Senior Member
Join Date: May 2009
Posts: 510
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Re: Need your Help/Advice - Got Dx with Brain Met
I'm so sorry to hear about this, Kris! I'll be thinking of and praying for you. I believe quite a few members have had success with Gamma Knife - be sure to ask your oncologist about it and keep us posted.
May you find a good and successful treatment plan soon,
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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01-22-2011, 03:05 PM
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#10
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris, I have no information or suggestion for you....just a heartfelt wish that you will soon have a good treatment plan that zaps the met. Thinking of you and sending a gentle hug.
Barb A.
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01-22-2011, 03:16 PM
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#11
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Need your Help/Advice - Got Dx with Brain Met
Hi and best of luck to you with your treatments. My daughter has brain mets (7) and is soon to have SRS (form of gamma knife) treatment after we see if Tykerb will work to reduce them. There are many options out there and by your reading all you can you'll become educated. So many say do not do whole brain radiation (WBR) and if the dr. feels tumor can be treated by gamma/cyber knife then definitely go for that over WBR. Maybe some of the others will weigh in on this too. My best to you
Joyce
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01-22-2011, 04:30 PM
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#12
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris,
The message board gave me a lot of support when my brain tumor was diagnosed. I was given a lot of comfort by members who had and who never had a brain met, as well as from women who are early stage.
The next step is to find out whether you are a candidate for stereotatic radiosurgery. I had a craniotomy followed by five dosages of stereotatic radiotherapy. I was disappointed initially because I though the tumor in my left front lobe could be handled in one targeted shot of radiation. The docs said that at 2.6 cm the tumor was too big for that and there would be better control with surgery followed by radiation, but Steph's tumor was larger than that and she had SRS, or one shot.
Let us know.
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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01-22-2011, 05:25 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Need your Help/Advice - Got Dx with Brain Met
Hi Kris,
I can't offer any advice that would be helpful...but I can say the word unremarkable is one of my favorite words since dx with bc. So your right...that is a positive on your MRI report.
Your in good hands here with your her2 family...I know they will give you good direction and advice so you can get this all behind you. Keeping you in my thoughts and prayers.
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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01-22-2011, 06:19 PM
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#14
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Need your Help/Advice - Got Dx with Brain Met
I just want to thank everyone again. I feel more hopeful and have a lot more knowledge than I did earlier this morning when I got the bad news. Thanks to all of you, I can sleep tonight.
A grateful HER2 Support Group member. You all have been so helpful to me.
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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01-22-2011, 06:29 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Need your Help/Advice - Got Dx with Brain Met
Awww Kris...as you know I am just heart sick with this new development....
I can't believe Kavy too has been diagnosed with Brain mets...sometimes I feel like we are all in the Twilight Zone.
I just spent the last 10 minutes searching for a fabulous thread that StephN posted in 2005 with pictures of her gamma knife. I couldn't find it. StephN, if you read this...did you not post pictures of your procedure? I thought it was incredible; I remember feeling riveted at the time...is it still on this board? Or did we lose it during the transition?
Also, during my search I reread StephN's comments about steroids...I have not taken them, but I seem to recall that they can have challenging side effects....of course you may not have to deal with this so forgive me for jumping the gun.
As you get more info from your doctor, remember to touch base with Brenda (Hutchibk) too as she has had much experience with brain mets. Stay with us. God speed this week.
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
Last edited by mamacze; 01-22-2011 at 06:34 PM..
Reason: correction
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01-22-2011, 09:51 PM
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#16
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Need your Help/Advice - Got Dx with Brain Met
Hi Kris
I've been researching brain mets as I suspect I have a pretty high likelihood of developing them, in fact since I have never had an MRI I may be harbouring them as yet without symptoms. Rich posted a really good review article last year. I think I brought it up when I searched "Whole Brain Radiation" or "Brain Mets". I'm sure you are in good hands and will get the best treatment available.Thinking of you and hoping that your treatment is as efficient and effective as it has been for so many on this board.I'm really impressed by your ability to go forward with the next step-but then I guess that is no big surprise as you DID run the half marathon last year to my great admiration.
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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01-23-2011, 10:51 AM
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#17
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris, My prayers and good thoughts are going out to you. Stay strong. Ceesun
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01-23-2011, 01:10 PM
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#18
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris,
So sorry to hear of the new challenge. It must be reassuring that some of our sisters have had directed treatments a number of years ago (that much more experience and refinement) AND are still doing very well.
Here is to a restful evening.
More hugs coming your way....Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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01-23-2011, 01:23 PM
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#19
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Need your Help/Advice - Got Dx with Brain Met
Kris
I was so sad to read this news it broke my heart.
Please try to hang in there till you can clearly find out about your options.As others have said there are many who have done really well after treatment.
Please let us know what happens.
Love Ellie
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01-23-2011, 02:24 PM
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#20
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Need your Help/Advice - Got Dx with Brain Met
Sorry to hear the news however if I knew then what I know now I believe my daughter would have opted for gamma knife surgery from the git-go. Therefore, since it seems you have just one tumor in the brain ask about it (or other SRS type) rather than whole brain radiation. My best to you
Joyce
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