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06-28-2007, 09:32 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Oh Marie, I know this is SO what you did not want to hear! My heart just sank when I read your post. If you feel like screaming, you should go ahead and do that (although you may want to do it out of earshot of your hubby since that might not help HIM).
Then try to calm yourself. BREATHE. BREATHE again. And again. The MRI report gives you more information. It is not the end, it is only information, which will help guide you and your team in deciding what the next step is.
You know that brain mets are treatable - as many on this board have been LIVING with this for years. Christine. StephN. Esther. Others (sorry I can't remember names!).
You didn't mention how large or extensive the brain mets is, perhaps you don't have this information yet.
Check the info on the Her2 home page, the link is below.
http://her2support.org/index.php?option=com_content&task=view&id=44&Itemi d=67
Again, I am so sorry you have this additional wrinkle to worry about. But you now have much more/better information for DFCI than you would have last week.
Please don't give up hope, keep believing.
chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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06-28-2007, 11:51 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Marie-
Chrisy has good advice, to try to remain calm, and I see you have already scheduled an appoiintment at Dana Farber, which is great. Try to accumulate the info you need to make a decision, and then you can make your decision. Tykerb is supposed to be better than the herceptin for the blood/brain barrier, and perhaps that will be an option for you and your husband. I wish I had more soothing words, but know you are in our thoughts...
Regards,
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Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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06-28-2007, 01:03 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Marie,
Chrisy and Shell covered it well - I just want you to know I will
keep your husband and you in my prayers. Wish I could offer
more - but please do not give up! Many of the gals here and
fought back and won.
God Bless,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-28-2007, 01:03 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi,
I strongly suggest that you make an appointment with Dr. Peter Black at the Brigham. I had a 3cm brain tumor three years ago and I am fine today. At that time I had mets everywhere except in the bones. Now I am only dealing with the bones. Dr. Black is excellent and one of the best in the country. He usually has clinic on Fridays. Maybe you can get an appointment for tomorrow.
I am thinking of you and certainly can relate to how you feel.
Best wishes,
Barbara H. (also a Dana Farber patient)
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06-28-2007, 02:09 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Marie I'm so sorry for you both and always read your posts both on Komen and here. I'm glad the girls gave you good advice as I don't know much about this although my friend I met through this board had brain mets.She had surgery which removed only 40% of the tumour and then rads.I spoke to her last week and she is recovering well and will probably start Tykerb soon for her bone mets. I'm sure the girls here are right and there is life after this but can understand your panic. Please know my thoughts and prayers will be with you and your husband and try to see this as another "bump" which you will both get over.
Hugs to you
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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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06-28-2007, 05:01 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Many Thoughts And Prayers Are With You
Marie dear, Please know that you and your husband are in our thoughts and prayers. Try to let all that love surround you as you fight back your understandably overwhelming feelings. I remember thinking -- there can't be anything worse. This is it. The end is near. Slowly, I came out from behind the locked bathroom door to speak to first one daughter, then the other. I didn't think I would ever get my BELIEF back. That is most probably where you are, but we all know how powerful *belief* is and you, honey, own it! I have read your posts and marvelled at your incredible attitude. You glow. Listen to Chrisy. BREATHE. BREATHE again. Slow down. Let it all seep in gently, when you are ready. For now, be there for your husband. Let that be your number one priority. Take the advice of these wonderful ladies who've been there and come through. Remember that -- they have come through. If one can do it -- your husband can do it. Let the power of that KNOWING hold you together. Let your love keep you strong. For your husband. He needs your loving belief now more than ever. Do it for him, honey. We're here for you to sound off when ever you want. And these women have great advice and enough courage to keep us all buoyed for a long while. Sending loving, healing energy to you and hubby... ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-28-2007, 06:14 PM
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#7
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Marie, I'm keeping you and your husband in my thoughts and prayers. Other's have survived this diagnosis, including our esteemed founder Christine, so take heart.
Tykerb does cross the blood/brain barrier, so that may be the next step!
<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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06-28-2007, 06:36 PM
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#8
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Senior Member
Join Date: Jul 2006
Posts: 869
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Marie, I wish I could help you...I believe there are options to try-stay brave, dear friend, try for your husband. love, Cathy Ceesun
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