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05-18-2011, 11:56 AM
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#1
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Member
Join Date: Apr 2011
Location: Ohio
Posts: 15
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NEED SUPPORT TODAY! More bad news.
I had an mri of my brain yesterday because I had shaking on my left side of my body a few days ago. The MRI shows highly abnormal in brain. The lining of the brain looks like cancer & they want to treat with radiation. I was doing so well until I overworked my body with housework, laundry & grocery shopping 2+ weeks ago & pulled a groin muscle. That's when they did a full skeletal MRI & found 2 tumors one pressing on my spinal cord & one on my lumbar which I've been having radiation to about 5 days now (I get 10 treatments). Now they think I had a seizure & want me to start anti-seizure meds & start radiation to my brain starting tomorrow for 10 days! Has anyone ever had radiation to the brain due to the lining being involved and how did it go & did it work? The weird thing is feel fine! I'm so torn on what to do - 2nd opinion or start this ASAP?
I was diagnosed with BC in 10/08, had a lumpectomy 4/12 lymph nodes + ER/PR positive HER2+ - had TCH & radiation. Got clear body scans, good mammograms for 2 yrs & then got a cough & found it in my lungs, trachea, bones. On xeloda/tykerb for 2 mos & only small amount left in lower left lobe but bones mixed response. Now since the radiation, I'm off chemo & this new development on the lining of my brain. Please help me with some success stories - I need it soooo bad right now! Gail
__________________
 10/08 found lump - not even due for mammogram yet. PR/ER/Her2+ Had lumpectomy for 2 lumps 1.1cm & 1.0cm. 4/12 positive lymph nodes. Chemo TCH x 6, radiation. Scans all clear.
10/10 dry cough lung mets, sternum, trachea, bones.
12/10 started T/X
2/11 most gone except for small area in lower lobe of left lung & mixed bone response.
5/11 pulled muscle in groin, had MRI of skeleton, found 2 tumors one pressing on spinal cord & 1 on lumbar.
Started radiation immediately to shrink. Getting first shot Monday for bones (Xgeva sp?) starting back on Hercepin Friday & new plan of attach.
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05-18-2011, 02:47 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: NEED SUPPORT TODAY! More bad news.
I put leptomeningeal metastases into the search function above and got the following (including several of my previous posts): and be sure to read the reports from Courtney who is currently being treated, successfully so far, with intrathecal herceptin , although for brain mets rather than leptomeningeal mets
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Showing results 1 to 25 of 29
Search took 0.05 seconds. Search: Keyword(s): leptomeningeal, metastases
Thread / Thread Starter Last Post Replies Views Forum
intrathecal herceptin for leptomeningeal her2+ mets--clinical trials begin in France
Lani
05-05-2011 03:54 PM
by Lani
0 42 her2group
Started Intrathecal Herceptin Today ( 1 2 3)
CourtneyL
05-05-2011 03:53 PM
by Lani
46 1,119 her2group
intrathecal herceptin for leptomeningeal carcinomatosis (too many mets to count) --
Lani
03-30-2011 01:52 PM
by SilentBob
12 426 her2group
Heceptin injected thru blood brain barrier
1rarebird
03-11-2011 12:21 AM
by Lani
4 178 her2group
UCSF Advocacy and Scientific Retreat
bejuce
01-11-2011 02:05 PM
by Joan M
12 345 her2group
Taxol Doesn't Treat Common Breast Cancer
dee
12-17-2010 08:22 AM
by Hopeful
4 619 Articles of Interest
Antimitotic chemos promote adhesion in detached and circulating tumor cells
Rich66
09-10-2010 05:53 PM
by Rich66
7 1,579 Articles of Interest
Brain mets
Rich66
09-03-2010 08:56 PM
by Solarhersteller
13 3,249 Articles of Interest
possible progress in treatment development for leptomeningeal breast cancer metastase
Lani
01-02-2010 10:58 AM
by Lani
0 179 her2group
Neoplastic meningitis (spinnal mets)
Rich66
12-07-2009 11:22 AM
by Rich66
0 1,725 Articles of Interest
EVERYTHING you need to know about her2+ brain mets
Lani
09-23-2009 08:10 AM
by Lani
0 176 her2group
Update: Spinal Fluid me ( 1 2)
pattyz
08-27-2009 02:17 PM
by hannah
21 592 her2group
Interesting brain mets digest/newsletter
hutchibk
07-04-2009 12:26 PM
by pattyz
5 195 her2group
~Too Many Brain Mets To Count~Mighty Oak's Saga Continues... ( 1 2 3 ... Last Page)
Believe51
06-24-2009 01:13 AM
by Believe51
91 1,794 her2group
Believe 51, Christmas is coming early this year
Lani
06-16-2009 08:03 AM
by Lani
3 196 her2group
her2+ breast cancer associated with higher risk of brain mets--but better survival
Lani
02-28-2008 06:24 AM
by Lani
0 159 her2group
Her2 and Inflammatory BC trial
Soccermom
12-07-2007 01:35 PM
by Soccermom
0 242 Clinical Trials
latest on breast cancer CNS mets, her2+ in particular
Lani
11-03-2007 01:10 AM
by Lani
0 193 her2group
hot off the press MDAnderson review of 10 yrs' experience w bc brain mets
Lani
10-28-2007 07:06 PM
by fullofbeans
3 358 her2group
Is Tykerb better than Herceptin?
gdpawel
08-23-2007 05:45 AM
by doh2pa
5 881 her2group
for those with brain mets..don't know why it took so long for them to notice!
Lani
07-07-2007 10:51 AM
by Lani
0 199 her2group
ASCO abstract: most important to STAY on herceptin once have brain mets!!!
Lani
06-12-2007 01:32 PM
by Andrea Barnett Budin
10 457 her2group
Hi, I am back....question re:herceptin alone.
Robyn
09-11-2006 04:49 AM
by Shell
9 450 her2group
Be aware ; carcinomatous meningitis
3sweeties
05-19-2006 06:13 AM
by 3sweeties
0 347 her2group
Herceptin is now being tried intrathecally (injected into the brain via the CSF)
Lani
04-07-2006 02:41 AM
by R.B.
2 292 her2group
HER2 Support Group Forums > Search Forums
Search Results
Welcome, Lani.
You last visited: Today at 05:44 AM
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Showing results 26 to 29 of 29
Search took 0.04 seconds; generated 2 minute(s) ago. Search: Keyword(s): leptomeningeal, metastases
Thread / Thread Starter Last Post Replies Views Forum
Here we go again! ( 1 2)
Lisa
01-07-2006 05:34 PM
by Unregistered
31 1,413 her2group
for those with CNS mets--newly published article
Lani
12-15-2005 10:59 PM
by Lani
0 170 her2group
trial for Lapatinib
*_celina_*
06-17-2005 08:00 PM
by al from canada
6 375 her2group
No Link Between Herceptin and Brain Mets
Joe
10-13-2004 10:51 AM
by Joe
1 82 her2group
Showing results 26 to 29 of 29
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05-18-2011, 03:14 PM
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#3
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: NEED SUPPORT TODAY! More bad news.
Oh Gail-
I am so very sorry for your news. I do not have any information but there are so many smart women here. Someone will have input. And there will be success stories that others will share.
Stay strong and feel the support 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
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05-18-2011, 03:47 PM
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#4
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: NEED SUPPORT TODAY! More bad news.
Gail,
I just want you to know that I am rooting for you and pray that you will beat this new challenge. The post today from CourtneyL is very encouraging and may be the treatment for you.
Love and Hugs,
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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05-18-2011, 04:13 PM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: NEED SUPPORT TODAY! More bad news.
Hi Gail,
I wish I had some answers, but you surely have my good thoughts and prayers. One of our heroes will communicate soon and give you some help for what you need. Lots of love and belief, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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05-18-2011, 04:32 PM
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#6
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: NEED SUPPORT TODAY! More bad news.
Sending god wishes Gail!!! xx
__________________
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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05-18-2011, 04:50 PM
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#7
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: NEED SUPPORT TODAY! More bad news.
Gail,
I don't have experience with this...but many here do and I know they will chime in to help you deal with this. Meantime, I will keep you in my thoughts and hope you feel the hug,
Karen
__________________
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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05-24-2011, 08:45 PM
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#8
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: NEED SUPPORT TODAY! More bad news.
Hey, I want to bump your bad news up, so that others can lend some support. I hope you have had time to think this through and get more information from your doctor. I also hope that you are not in the Tornado striking zone. Thinking of you and sending my support.
All the best,
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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