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01-26-2010, 09:52 AM
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#1
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Junior Member
Join Date: Jan 2010
Posts: 3
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Advice Please
I am new to the site - and new to having cancer touching my life.
My mother was diagnosed with Breast Cancer and Lymph node Cancer in October, and we found out this week that it has metastasized to her liver.
The doctors have said that they are now not looking for a cure - but rather to prolong her life.
We are in Canada - and she will be taking part in a clinical trial for a drug 'lapatinib'.
She starts chemo treatments on Feb 2 - will also be on Herceptin and involved in the clinical trial.
What I would like to know is -
is there a success rate/chance for survival when it has metastasized?
She is HER2 positive, and er/pr negative.
As I said I am so new to this and pretty scared.
Thanks
Heather
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01-26-2010, 03:36 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Advice Please
The only advice I have is to hang in there and tell your mom to do the same. Doctors don't know everything. They can't predict exact outcomes for everyone. Sometimes people live alot longer than doctors think they will. Good luck to your mom. Take good care of yourself and your mom.
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01-26-2010, 04:05 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Advice Please
Heather,
I am so glad that you found us. I am confident that this site will provide both you and your mother with a lot of hope for the future.
As you can see from my history...I too had breast cancer move to my liver. Well.......that was 2+ years ago. Between the herceptin, chemo and freezing the tumor, I currently have No Evidence of Disease (NED).
It was through this site that I learned about a multitude of options and have had a personal cheering section.
So....take a deep breath...while chemo is challenging, many of the women on the site were able to lead a very "normal" life. (working, traveling, continuing with sports they love) .
Please don't hesitate to ask ANY question. I currently work full time so my participation on the board is somewhat sporadic. But private message me if I've missed a question.
Hang in there....lots of love and support....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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01-26-2010, 05:02 PM
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#4
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Member
Join Date: Jan 2010
Location: Milan, Italy
Posts: 5
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Re: Advice Please
Hello, I know for certain that lapatinib is great, especially if combined with trastuzumab (Herceptin). As for surviving with mets, I know several women still alive and doing fine after many years (10 or so). So please don't be scared...
__________________
Laura
Left breast IDC, 4/4/07 Quadrantectomy & Axillary dissection: 4/11 pos. nodes.
G3, Er-Pr+, Her2+++.
4 Adriamicin & Taxol + 4 CMF + 35 rads + 1 year Herceptin + Femara for 5 years
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01-26-2010, 05:07 PM
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#5
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Advice Please
I am sure you are very frightened. The best thing I have found to deal with all my fear is to become very informed and involved with my treatment plan. May I recommend that you view this very recent open conversation about Metastatic Breast Cancer. These three oncologists are world renouned and you can trust what they have to say.
http://www.mbcnetwork.org/video/ericwebversion2.html
My very best to your mom and you. I hope the trial goes well for her. The drug she will be taking goes by the name Tykerb. You will see many posts on this site about the side effects of Tykerb and how to deal with them. I think your mom will find this information very useful.
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01-26-2010, 05:21 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Advice Please
Hi Heather,
You are correct, there is currently no "cure" for metastatic breast cancer, although even with liver mets some people do well for a long time and there are treatments that can be effective. I'mth ev still here over 5 years post liver mets diagnosis...and there are others with even stronger track records.
There is cause to be hopeful...lots of research is being done and even lapatinib + herceptin just has started showing good results.
Not sure what else is in the trial protocol from your post - can you give some more info?
__________________
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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01-26-2010, 08:11 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Advice Please
Hi and Welcome, though I am truly sorry that you have need to join us. First of all the dx. of breast cancer is shocking and then to have to make decisons all at once is not easy. As you can see the ladies on this site are very informed and have first hand experience and are loving, caring and will offer all they can to help you and your mother.
Do not lose faith and hope. Many of the women on this site are surviving and living great lives in spite of their dx.
The trails with tykerb /and/herceptin have been showing very good results.
Stay strong we are all praying for you and your Mom.
Best Wishes,
Jean
__________________
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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01-26-2010, 08:17 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Advice Please
__________________
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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01-26-2010, 08:50 PM
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#9
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Advice Please
Hi Heather,
Although my cancer hasn't spread I participated in a clinical trial for Herceptin/Tykerb. As you can see from my information below, it was a huge success. I do know there are other ladies on the board who do have mets and have done well with this combo as well.
Your mother is lucky to have you. My daughter has been such a source of comfort for me.
Don't give up hope.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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01-28-2010, 07:44 AM
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#10
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Junior Member
Join Date: Jan 2010
Posts: 3
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Re: Advice Please
Thank you so much to everyone who took the time to reply.
I do feel much better, more informed and hopeful.
We go next Tuesday to meet with the doctor and start chemo.
This website is a true source of knowledge and support - and I am so glad I found you all.
Be well - I will keep you updated as we go along.
Heather
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01-28-2010, 08:41 AM
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#11
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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Re: Advice Please
I'm still going 4+ years after my metastatic diagnosis (liver and bones). Herceptin and Navelbine have been doing the trick for me. Good luck to your mother!
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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03-16-2010, 06:27 AM
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#12
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Junior Member
Join Date: Jan 2010
Posts: 3
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Re: Advice Please
Thank you to everyone who has responded.
So a brief update - My mom was accepted onto the trial using Lapatinib - and she was randomized to recieve the drug. That was fabulous news for us as we have read such wonderful things from you all regarding the drug and it's effectiveness.
My mom is having her third chemo session this week. Her first session went really well, with only minimal side effects following that. I think as a result we were all thinking that this would be a breeze.
Then the second session! She was vomiting and had diarrhea really badly. Her mouth has sores on the edges - so if she opened her mouth too wide, they would split (we joked that she will end up like the Joker at the end of it all!) We are also exploring anti-depressents for her.
In the end, until this next session they suspended the Lapatinib - which helped to calm the stomach. Her oncologist has reduced the next session by 15%, as well as the oral chemo.
The GOOD news is that the lymph node that the oncologist could feel and measured at 4.4 cm prior to chemo beginning is now completely gone!!
I will keep you updated as our journey continues.
I am so thankful to have everyone here - I read your stories and I am truly hopeful.
thank you - all the best
Heather
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03-16-2010, 09:49 AM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Advice Please
Great news about the lymph node, Heather.
As for your mother's issues with mouth sores, get some Biotene mouthwash and toothpaste at a large drugstore. This will help. Or ask the onc. if he/she has "magic" mouthwash for you mother to use.
Wishing your mom lots of good luck.
all the best
caya
(a fellow canuck!!)
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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03-16-2010, 02:10 PM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Advice Please
Heather,
Glad the medicine is helping your mom. Hope she is feeling better.
Amelia
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