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Old 12-07-2018, 03:34 AM   #1
Benk
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Brain met ??? Anyone have advice

Hi all
I have not need to post for a while we have been doing so well for my wife from stage iv at diagnosis inApril 2016 to NED last June 2018. Then scans last week showed “possible” brain met. Now all the fear has come straight back just like it was Initially when diagnosed.
We met radioncologist today to discuss grammar knife once an mri is completed
Can anyone advise if they have been in the same position ? Is it likely the mri will find more ?
They are saying more than 20 Mets means while brain radiation ??

Any advice or positive experiences would be appreciated

Thanks
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Old 12-07-2018, 09:38 AM   #2
Donna H
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Re: Brain met ??? Anyone have advice

Hi Benk-
I have no experience with possible brain mets but I am certain someone on the site while chime in soon with advice.

Try to stay strong and remain positive. Sending positive energy and good thoughts your way.
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Old 12-08-2018, 10:29 PM   #3
Pamelamary
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Re: Brain met ??? Anyone have advice

Hi Benk,
Really sorry to hear this. There have been many women here with experience in this area and I am sure some will reply to this thread. You could also search the site for past discussions. Hope the MRI goes well, but try to remember the diagnosis may not be as scary as I am sure it feels right now.
Best wishes to you and your wife.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 12-09-2018, 02:01 AM   #4
Benk
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Re: Brain met ??? Anyone have advice

Hi Donna and Pam
Thanks for your thoughts and prayers
I am hoping it’s euther not cancer ( although the oncologists are confident it is )
And or it’s only one spot.
I have searched ‘‘tis site many times in the last few nights and found some useful information.
I had so hoped we would go as Ned for awhile.
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Old 12-09-2018, 02:56 PM   #5
tricia keegan
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Re: Brain met ??? Anyone have advice

Hi Benk, so sorry you and your wife may be facing this. I know we've had a few members who can help you although the site has been a little quieter than usual lately. Sending good wishes and please keep us posted.
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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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Old 12-09-2018, 03:39 PM   #6
ariana
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Re: Brain met ??? Anyone have advice

Benk , HAVE a appointment Tues.Oct 23 an MRI that just didnt feel right to the Onc.
Waited 6 weeks for repeat.. I guess I am next in line. They thought mini strokes
maybe at best. Just couldn't tell. BY THE WAY TYPE IN BRAIN METS in search box.
Some one posted about getting a brain MRI once a year.The pet scan only goes to the base of skull I think. So I took that Idea and ran with it. It may have saved me life with an early start.
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Old 12-13-2018, 06:16 AM   #7
Benk
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Re: Brain met ??? Anyone have advice

Thanks Tricia
Ariana I have discovered through both this site and the recent discussions with oncologist and radio onc that a ct or other tests are not as clear a “ picture “ as an mri so as you suggest I think they should be done constantly.

We did mri today so now comes the waiting and we should here in the next few days I guess.
I have been investigating cannabis oil from the outset of disease and I think I will peruse that for my wife should this be a less than positive result.

Thanks again
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Old 12-13-2018, 01:58 PM   #8
Donna H
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Re: Brain met ??? Anyone have advice

Always good to look into all the options and knowledge is always a good thing!
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Old 12-20-2018, 02:50 AM   #9
Benk
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Re: Brain met ??? Anyone have advice

Hi
Update on my wife So mri confirms 1 brain met at 10mm x 18mm
Gamma knife booked for the the 7th of January
My wife seems even more tired than usual not sure why?
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Old 12-20-2018, 01:35 PM   #10
Pamelamary
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Re: Brain met ??? Anyone have advice

Hi Benk,
While it is hard to get your suspicions confirmed, at least there is only one and you now have a treatment plan. People have had great results from gamma knife. We'll be thinking of your wife on January 7.
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 12-20-2018, 08:18 PM   #11
Benk
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Re: Brain met ??? Anyone have advice

Thanks Pam
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Old 12-20-2018, 10:26 PM   #12
StephN
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Re: Brain met ??? Anyone have advice

Hello Benk. I had gamma knife on two brain mets way back in Jan of 2005. One was rather large and almost at the gamma knife limit and the other quite small. Since that time I have not had any more brain mets or any active disease below my ears. The gamma knife was quite tolerable as it is done from the exterior. They let me bring any CD's I wanted to play to help me relax. Ask about music if they do not mention it. Some of my fav music was very helpful! I chose some Celtic spirit type music. The rather ethereal quality was right in line with the brain zapping.

Your wife should do quite well after her GK procedure. I was out driving the next day. All the best for this holiday season now that you have this plan established.
__________________
"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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Old 12-22-2018, 09:41 AM   #13
vqtilley
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Smile Re: Brain met ??? Anyone have advice

Hi - very sorry you're dealing with this. Everyone's case is different, but I think you have good reason to hope.

Three years after my diagnosis (Stage IV), in Spring 2015, I was found to have a sizable met in my cerebellum. Had an 8-hour surgery at the Siteman Cancer Center at Barnes (St Louis) to resect it and then Gamma Knife radiation treatment. The combination seems to have gotten the whole thing: at least, I've had no brain mets since.

Gamma knife is amazing. They can adjust the hundreds of killer beams to the exact shape of the lesion/s with no impact on neighboring tissue. Ideal for brains. Side effects for me were an unpleasant background nausea that lingered for months, contrary to what they told me was normal, but it eventually disappeared. The treatment isn't a pleasant process to go through because they have to *bolt* a frame to your head in order to precisely aim the rays and you have to lie in the (silent) machine for about an hour unmoving in this thing. The last 15 minutes I found especially hard. They take it off immediately afterward but it's a small trauma - well worth it, of course. Someone here suggested bringing their own music - very good idea!

I should clarify that I went on Kadcyla several months later due to a general progression (right axilla, etc.). That was far harder than the Gamma Knife due to side effects, but it knocked out the progression and although I went back on Herceptin about six months later (due to low platelets) I've had no progressions since. I think the brain surgery may have been fortuitous because, while Kadcyla can apparently breach the BBB, it seemed more certain if the BBB is already breached by surgery. Anyway, Gamma Knife plus Kadcyla has extended my survival by three years so far and all scans are still clear, so I'm definitely a fan!

I'd guess you've figured this out already, but I'd suggest avoiding WBRT (whole brain radiation therapy) if you possibly can because it can have profound cognitive effects down the road. And it seems we generally can. I believe that Gamma knife is now the standard of care where there is one or just a few lesions that can be zapped by it. And if another lesion appears, it can be zapped, too. Leptomeningeal disease is the worry I have now, but after three years I'm more optimistic.

Warm wishes in all this!
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 01-08-2019, 12:33 AM   #14
SoCalGal
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Re: Brain met ??? Anyone have advice

She's more tired than usual because this stupid disease is exhausting! I had a single brain met zapped via gamma knife in 2008. Gone girl. But I'm still here. You don't say if your wife is still on herceptin?
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 most average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a plus nivolumab. hope they take me.
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Old 02-19-2019, 06:41 AM   #15
Benk
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Join Date: May 2016
Posts: 33
Re: Brain met ??? Anyone have advice

Hi all
Sorry I have not posted to your responses in a little while
We had the gamma knife done back on 7th of January and the biggest
Side effect apart from her face swelling from the frame was some nusea and
Mild headaches. We now have to wait until April for follow up mri to see any success. To answer your question so cal girl she is on herceptin and perjeta very three weeks with tamoxifen as pat of the regime.
Thank you for all the well wishes I will update this thread as soon as we get some results

Regards
Ben
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Old 06-07-2019, 05:45 PM   #16
Benk
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Re: Brain met ??? Anyone have advice

Hi all
As a matter of update we had scans back in March to check results of the gamma knife , which ended being done on two spots with the second being precautionary as the neuron oncologist not being positive it was disease but opting todo it as a precaution.
The results where good with very little of the original site left and what was left being considered as scar tissue.
We have another check up mri due this month.
Thanks again for all the advise and support I wish everybody well.
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Old 06-09-2019, 02:32 PM   #17
tricia keegan
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Posts: 3,428
Re: Brain met ??? Anyone have advice

Thanks for the update BenK and hoping for good results from the upcoming scan.
__________________
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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Old 06-10-2019, 12:50 AM   #18
Pamelamary
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Re: Brain met ??? Anyone have advice

Glad to hear things are going well - good luck with the next scan.
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