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Old 06-12-2010, 05:59 AM   #1
joyce lutz
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Join Date: Oct 2009
Posts: 84
Recent brain mets help

My daughter was recently diagnosed with brain mets and I am at a loss - not to mention devastated! She has already been through so much. Can anyone offer suggestions with how she can deal with all of the side affects from this horrible diagnosis and what to expect going forward? She is currently undergoing whole brain radiation and they say cyber knife is not an option due to the number of mets. She has liver (2) and bone mets (1) which are stable at this time and also gets Herceptin every 3 weeks. She is also on decadron. Would like to hear from anyone going or who has gone through this. Thank you all.
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Old 06-12-2010, 06:29 AM   #2
Lori R
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Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: Recent brain mets help

Dear Joyce,
I am so sorry to hear that your daughter has to battle this frustratingly difficult disease.

While I have not had brain mets, I do chat with a woman at my Herceptin session who successfully went through whole brain radiation and is doing quite well. I've known her since the beginning of my treatment, so it's been at least 3 years since her WBR treatment.

Honestly...it sounds like it was a challenge, but she came out the other side is doing well. I understand the steroids (decadron) is one of the biggest challenges. Appears it is a necessary evil but required a lengthy transition off the steroids. I believe Kate took about 3 months off of work, but has since returned to her job and is a couple years from retirement.

Kate is a wonderful, caring person and I know would be willing to talk to you or your daughter. If you are interested, PM me with your contact information and I will try to get a hold of Kate if you'd like.

Many on this site have said this journey is a long distance event, not a sprint. Sometimes it is a matter of putting one foot in front of the other, even when it doesn't seem possible. But...soon the clouds part and you find you've survived.

Love....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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Old 06-12-2010, 06:45 AM   #3
joyce lutz
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Join Date: Oct 2009
Posts: 84
Re: Recent brain mets help

Thanks for the words of encouragement. Hope others will respond also.
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Old 06-12-2010, 06:48 AM   #4
joyce lutz
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Posts: 84
Re: Recent brain mets help

How to I send a PM please?
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Old 06-12-2010, 07:15 AM   #5
Lori R
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Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: Recent brain mets help

Joyce,

At the top of the tool bar there is an option for "members list".

Click on the members list selection. I believe another bar appears with the letters of the alphabet. Select "L" for Lori R.

I am on about page 8. By Lori R you will see an option of send a PM. Type your info and hit enter. I will receive an e-mail, internal to the board.

Unfortunately, my next appt. for Herceptin is a couple of weeks away. I can call my onc's office and see if they can contact Kate to let her know I would like to get a hold of her. (of course, they won't give me her contact details)

We'll talk soon!!! Hang in there....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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Old 06-12-2010, 12:20 PM   #6
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Recent brain mets help

Sorry this is in your life now.

Especially hard for mothers to see their daughters stricken.

I have not had whole brain rads, just Gamma Knife since I had only two brain mets. I have known several women who went the whole brain route. Most did very well and were able to drive and function near to normally once they were weaned off the very nasty decadron.

I also had to take decadron, but not for very long. However, it was very hard on me, and sapped the strength in my legs.

All the best for a good outcome for your daughter. Great news that her other spots are small and stable. There are several new treatments either out or on the way that should benefit her and hopefully get her in full remission.
__________________
"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 06-12-2010, 01:02 PM   #7
joyce lutz
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Join Date: Oct 2009
Posts: 84
Re: Recent brain mets help

Thank you for your response. Hoping to hear more from others who have had wbr and/or are taking decadron. Wishing the best for you!
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Old 06-12-2010, 02:04 PM   #8
GemmaG
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Location: Bergenfield, NJ
Posts: 121
Re: Recent brain mets help

Joyce,
I've had brain mets in June 2008. Had craniotomy to remove the tumor 1.2cm I think if I remember it correctly. The surgery was a success (aug.2008) then had 20 WBRT one month after the surgery. My chemo was put on hold until WBR is finish.
All my Brain MRI (every 3 months) since the surgery and wbr shows no recurrence.
I'll keep you and your daughter in my prayers. Pls. keep us updated.
Gemma
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My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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Old 06-12-2010, 05:16 PM   #9
joyce lutz
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Join Date: Oct 2009
Posts: 84
Re: Recent brain mets help

Wow you sure have had a lot to handle. It must be so difficult for you. I pray for good news for you and thank you for your post! Your post gives me some hope!
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