Advice Please

[CanButterfly]

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

[ElaineM]

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.

[Lori R]

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

[mirtillo]

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...

[Nancy L]

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 (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.

[chrisy]

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?

[Jean]

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

[Jean]

http://www.washingtonpost.com/wp-dyn/content/article/2009/12/11/AR2009121104350.html

Recent news on Tyker/herceptin.

[vlcarr]

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.

[CanButterfly]

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

[Colleen007]

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!

[CanButterfly]

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

[caya]

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!!)

[schoolteacher]

Heather,

Glad the medicine is helping your mom. Hope she is feeling better.

Amelia