HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 03-14-2014, 04:52 PM   #1
debsing
Senior Member
 
debsing's Avatar
 
Join Date: Sep 2013
Posts: 43
progression to brain

MRI showed two tiny tumors to brain that will require stereotactic radiation... is there any hope now????
__________________
Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
debsing is offline   Reply With Quote
Old 03-14-2014, 06:44 PM   #2
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: progression to brain

Hi,
I don't have personal experience with brain mets, but many on this list have, and gotten rid of them once and for all. I am sure, given time, others will chime in to give you much needed information and guidance. Wishing you the best always, and of course, there's hope!
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.
KDR is offline   Reply With Quote
Old 03-14-2014, 10:32 PM   #3
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Re: progression to brain

debsing, Absolutely - Know there is hope! I know others who have been living with brains mets for years. I hope and pray your radiation treatment is smooth and successful.
Joanne S
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 03-15-2014, 07:36 AM   #4
Cat
Senior Member
 
Cat's Avatar
 
Join Date: May 2010
Posts: 184
Re: progression to brain

Debsing,
There is soooo much hope. I have had 2 clean MRIs since surgery and cyberknife for larger mets than yours sound. My Drs sound very positive and even if they come back the cyber or gamma can be redone.
The cyberknife was very easy, I was able to drive myself and felt quite normal after. I had a mask formed one day and treatment was 3 days in a row that took about an hour and a 1/2 from walking in to leaving. I'm not sure but gamma may be one appt. but longer because they attach a frame to your head to prevent movement.
The fear can take over if you let it but all in all it was much easier than chemo. I think it becomes more intense because it is the brain but it is also very treatable.
Good luck, let us know how it goes,
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
Cat is offline   Reply With Quote
Old 03-15-2014, 09:16 AM   #5
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,210
Re: progression to brain

Keep the faith
__________________
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
BonnieR is offline   Reply With Quote
Old 03-15-2014, 09:45 AM   #6
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
Re: progression to brain

Dear Debsing, I'm so sorry to hear your news. There is always hope! You and your family are in my prayers. His peace unto you.
__________________
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
Pray is offline   Reply With Quote
Old 03-15-2014, 10:57 AM   #7
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,172
Re: progression to brain

You have odds on your side. You should consult your medical oncologist too to see if using Tykerb and Xeloda after your radiation on those pesky buggers will help. Both drugs cross the blood brain barrier and can assist in wiping out a cell or two that might have hopeful thoughts of growing.

We are here for you.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 03-15-2014, 12:12 PM   #8
'lizbeth
Senior Member
 
'lizbeth's Avatar
 
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
Re: progression to brain

Didn't our founder, Christine, live an additional 20 productive years after brain mets?

More then hope, you've still got science and medical tricks to get rid of those pesky mets.
'lizbeth is offline   Reply With Quote
Old 03-15-2014, 12:34 PM   #9
debsing
Senior Member
 
debsing's Avatar
 
Join Date: Sep 2013
Posts: 43
Re: progression to brain

Thanks for your input everyone!
__________________
Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
debsing is offline   Reply With Quote
Old 03-15-2014, 03:32 PM   #10
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: progression to brain

Hi Debsing -
Check my signature. I am almost 10 years out from discovery of 2 brain mets. They were treated with Gamma Knife and have never come back. I now have my surveillance MRI of brain every 10 months. Coming up at end of March.

I had NO symptoms, which was more scary to me than actually discovering them. That one could grow to 3cm and I had no balance or nausea problems.

You will be able to have a successful treatment and be just fine.
__________________
"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.

Last edited by StephN; 03-15-2014 at 06:35 PM..
StephN is offline   Reply With Quote
Old 03-15-2014, 06:25 PM   #11
debsing
Senior Member
 
debsing's Avatar
 
Join Date: Sep 2013
Posts: 43
Re: progression to brain

Steph n,
What do u think has contributed to your Ned status?
__________________
Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
debsing is offline   Reply With Quote
Old 03-16-2014, 01:54 AM   #12
KsGal
Senior Member
 
KsGal's Avatar
 
Join Date: Dec 2011
Posts: 585
Re: progression to brain

Yes mam, there is definitely hope. 15 months ago a scan found that I had five mets to the brain. I started whole brain radiation immediately, and the tumors completely resolved. I have been on Tykerb and Herceptin since then. Just last month I had one tiny tumor return in my brain. My body has remained clear. The mets in my brain is too small to treat at this time, less than 2 mm. In a couple months when it is larger, they will use cyberknife to get it out of there. I know how hard it is to hear that the cancer has spread to your brain, and it is frightening. But I have had a very good 14 months of feeling normal and healthy, and I expect to keep going this way for a long time to come. I pray that you, too, will have the same gift given to you. There is always hope...
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
KsGal is offline   Reply With Quote
Old 03-18-2014, 02:07 AM   #13
Bunty
Senior Member
 
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 465
Re: progression to brain

Debsing, I'm sure you have already gathered hope from reading the posts here. Wishing those brain mets disappear for you.
Hugs, Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
Bunty is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 12:33 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2021, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter