 |
08-25-2010, 08:09 PM
|
#1
|
|
Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
|
New Mets to brain/WBR
Hello everyone. I just thought I would let you know the cancer has spread to my brain. I have started WBR yesterday and I am very nervous and scared. I have to have 18 treatments. I asked about Gamma knife but I have too many spots to count and they are all small. The biggest one is 1.4 cm. I guess that is considered small. I would love to hear any advice, experiences or words of encouragement. Side effects, short term, long term, permanent? I have done a little research on line but I like to hear it staight from experience. Thank you for listening. I hope to hear from you soon. Sally
__________________
Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
|
|
|
|
08-25-2010, 09:15 PM
|
#2
|
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: New Mets to brain/WBR
|
|
|
|
|
08-27-2010, 06:00 AM
|
#3
|
|
Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
|
Re: New Mets to brain/WBR
Sally-
I have no wisdom to share but want you to know that I am praying for you. There are so many smart people out here...hopefully someone will have a personal experience to share.
In the meantime, feel the love, prayers and well wishes coming your way.
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
|
|
|
|
|
08-27-2010, 09:56 AM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
|
Re: New Mets to brain/WBR
Hi Sally
No wisdom to share except "one day at a time". You can get through this.
Jackie (down under)
|
|
|
|
|
08-28-2010, 02:24 PM
|
#5
|
|
Senior Member
Join Date: Jul 2010
Posts: 42
|
Re: New Mets to brain/WBR
Hi Sally,
I finished WBR (12 sessions) a month ago. I managed it with Boswallia extract without steroid. i was soooo scared before WBR, but finished it without major incidence. I know the side effects may come even after 6 months after WBR, but I am doing my best to recover and to avoid those ses. There are several succesful stories on this board and if you search WBR, you will find them. Those ladies are my inspirition. Hope everything goes well with your treatments. Grace
|
|
|
|
|
08-28-2010, 07:04 PM
|
#6
|
|
Senior Member
Join Date: Jun 2009
Posts: 343
|
Re: New Mets to brain/WBR
Hey Sally,
Just wanted you to know that I'll be thinking only positive thoughts for a successful outcome to your treatment. I can only imagine how scary it must be. I know there are a lot of folks who can offer you advice.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
|
|
|
|
|
08-29-2010, 10:27 AM
|
#7
|
|
Senior Member
Join Date: Oct 2009
Posts: 84
|
Re: New Mets to brain/WBR
Was wondering if anyone is on Avastin for multiple brain mets? My daughter began that treatment 4 weeks ago (after having WBR) hoping it'll break through the BBB. What other treatments do they recommend for brain mets?
|
|
|
|
|
08-29-2010, 10:28 AM
|
#8
|
|
Senior Member
Join Date: Oct 2009
Posts: 84
|
Re: New Mets to brain/WBR
Grace may I ask what meds you are currently on for the brain mets?
Joyce
|
|
|
|
|
08-29-2010, 04:09 PM
|
#9
|
|
Guest
|
Re: New Mets to brain/WBR
Sally/Joyce,
I too have brain mets. I was diagnosed with them on my seventh month of T-DM1.Had to stop T-DM1.
I have just finished with my second CYBERKNIFE round. I was first put on HERCEPTIN every three weeks, TYKERB 5 pills/day. It did not work. Metronomic CYTOXAN has just been added a couple of months ago. I am sistemically progressing nevertheless.
My oncologist refuses to put on AVASTIN, in spite of the fact that it appears the only way to go with brain metastases, she says that it causes brain hemorage, she says she would jeopardize her medical license if she does put me on AVASTIN. I would love to hear if other have their oncologist with the same opinion. PATRICIA
|
|
|
|
|
08-29-2010, 05:10 PM
|
#10
|
|
Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
|
Re: New Mets to brain/WBR
Patricia: I think your onc is out of date on this issue. Go to an NCI facility for an opinion on this.
Good luck!
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
|
|
|
|
|
08-29-2010, 05:50 PM
|
#11
|
|
Senior Member
Join Date: Oct 2009
Posts: 84
|
Re: New Mets to brain/WBR
Sorry to hear your news. I wish I could tell you Avastin was good or for that matter bad! My daughter was unable to have cyber knife due to # and size of mets. WBR did shrink them. I hope to hear from others on here who may be on Avastin for multiple brain mets that have had WBR. Can't seem to find anyone. I wish you all the best.
|
|
|
|
|
08-29-2010, 07:18 PM
|
#12
|
|
Guest
|
Re: New Mets to brain/WBR
DARLENE/DENISE,
Thank you for your comment. I need to get me a new oncologist!
PATRICIA
|
|
|
|
|
08-29-2010, 07:51 PM
|
#13
|
|
Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
|
Re: New Mets to brain/WBR
Patricia: It might be that you need an additional onc to consult and advise with your local onc. Find one at a facility that does a lot of clinical trials for bc brain mets. You need someone who specializes in this type of situation. I get treatments from my local onc, consult at Dana Farber which enables me to access their clinical trials and actually had Cyberknife for the brain lesions at UNC. My local onc is receptive to this and welcomes info from thought leaders at leading NCI facilities to help us navigate my care. No one doctor can know and be on top of everything plus take care of patients everyday. This is were researchers come in handy.
Avastin has been proven as safe when using it on a patient that has brain cancer or brain mets, and has shown efficacy in some primary brain cancers, however, not a lot of data proving effective for breast cancer brain mets. Just because a drug can pass the BBB doesn't mean it will be effective on the breast cancer that is there. This area of treatment is not well understood or studied at this time for many reasons. Long way to go on this from what I have learned.
Wishing you well...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
|
|
|
|
|
09-04-2010, 10:44 PM
|
#14
|
|
Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
|
Re: New Mets to brain/WBR
Hi I have whole brain rads for 6 brain lesions the largest on my brain stem in the first part of 2007. My rads were down to my C-2 spine. So it affected my ears, and my jaw. But it was effective in eliminating the tumours. I had 1 lesion that popped up in different spot in 1/08 gamma 2 craniotomy of 99% necrotic (dead) tumour with some active cells so far my last MRI's have been good, with Tykerb and herceptin on board.
Overall I have done well with the radiation side effects I thought of the beams (Icould see a light when the beams crossed) As healing lights!!
I'am a little short on the short term memory, but who isn't raising 20 somethings and a 10 year old!!!! I Will be 43 in October, so is it chemo/rad brain,or like everyone else.... That is what little notebooks and to Do lists were made for!!! I also work puzzles and going to go back to reading novels, it is good to retrain your brain.
Peace prayers and Rainbows of hope to You !!
Darita
Be brave and never let the DR's push you around!!Seek this site out and follow through with second opinions as others have posted even if it is a trip to another state!!
All of this is scary, trust God, enjoy life and laughter. Laughing is good therapy mentally and physically.
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
|
|
|
|
|
09-05-2010, 10:45 AM
|
#15
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: New Mets to brain/WBR
Hello -
Yes, the news of "BC spread to brain" is a kick in the gut. Catch your breath and take the next steps looking forward - never back.
Temador and Xeloda has been a long term successful combo for a few people who have tried it for brain mets.
You should see a brain SPECIALIST even if you have to travel a ways to get a good one.
I had two brain mets treated with gamma knife 5 years ago. No new ones since then.
Please post with your progress and questions.
__________________
"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.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 07:47 AM.
|
Linear Mode
