New to this...
 

Hello, everyone! I'm writing on behalf of my best friend, Julie. I'm new to this - and it's my first posting - so please forgive me if I don't know the correct lingo, etc.

Jules was diagnosed in 2001 with HER2+++ BC. She only had her lump removed as well as a few lymph nodes - followed by chemo and radiation. Three months ago her markers were up and we soon discovered that the cancer has spread to her hip. She was accepted in a special program (using Avastin and Herceptin). Last night we learned that the last three months of treatment have not worked for her. The cancer has spread to her ribs and vertebrae. Needless to say, Jules is devastated - and terrified. She's apprehensive to go online, so - here I am. I discovered this wonderful site last night. This IS the site! I know it could be tremendously helpful to Julie!

I do have a question: If Julie has NOT had Herceptin until the last three months (at the time of recurrence) and she has not responded to it (with the Avastin) over the last three months - does that mean she's not going to respond to the Herceptin - or is it all about the combination? I was encouraged to see so many success stories using Herceptin. I would welcome your thoughts - and honesty. Also - I would love to hear from young moms like Julie (Julie is 43 with a 4-year-old daughter). As her best friend, I want to be supportive - but I know that there is someone out there that can help her though this difficult time better than I can. I would love to hear from you! Thank you so much for your time - and thank you for all of your wonderful and inspiring stories! Sincerely, Kris

Kris,

Let me say, you are the one who can help her better than anyone here. We can give you information that you can relay to her. Do you realize how specail you are? So many or too many friends don't know what to do, so they walk away and do nothing. You are the best kind of friend Julie could have.

Herceptin. You won't know for sure if it's working or not. It could very well be working and holding back other areas that would or could metastasize. I would think now her oncologist would be switching her meds since she has spread. I am the same age as Julie, my children are a little bit older than hers and I have not met. I think most women on here would agree to have Julie continue with Herceptin unless for some medical reason it is not recommended.

You will hear from amazing women on this site who will help you and Julie to ask questions and tell you what has helped them. There are women here who have met and are living waaayyyy past what there doctors predicted. They are fascinating, inspriring and truely helpful and sincere and know all the ins and outs of almost all the chemo regimens that are out there. Tell Julie there are options.
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I just had a friend who was told that there was nothing left they could do and I got on here and within an hour she had more hope than that doctor ever gave her and she is in new treatment and doing super. My best to you and Julie and please keep us posted. I will keep Julie in my prayers and soon, she will be on the road to NED.

Thanks for the supportive message!
 

I love this site! Thank you so much for replying - and so quickly - to my message regarding Julie. Your words were thoughtful and inspiring - and they are truly appreciated! I've been on this site all morning and I'm finding more information here than I have anywhere else over the last three years! Thanks, again, for your help! I will pass the info along to Julie - and hopefully, she'll be on here soon! Take care of yourself! A grateful friend, Kris

Kris,
 

Hi, I only just now saw your post after responding to your e-mail...You are doing the right thing by reading this web-site. It is very supportive and informative. Thank goodness, Julie has a good friend like you. I also agree that if she is for sure Her-2 positive +++ she MUST stay on the herceptin, no matter what, until we can figure out what else may be going on with her. I sent you a lot of questions, if you will e-mail me back some of the answers I will try to help you get her more information.

Take care,
Gina

Dear Kris, Has your friend seen a radiation oncologist for the tumor in her spine? I was dx. with reoccurrance Feb. 04 to my rib, spine, mediastinym, and pelvis. I went to Cancer Treatment Centers of America in Zion Illinois for a second opinion and ended up staying there for 6 weeks and 22 rad. tx. to my spine and mediastinym. The doctors were really concerned as the tumor on my spine could have caused paralysis if left untreated. I have since had 15 months of chemo out of the last 18 and have been able to keep things stable. I was dx. 14 years ago with stage 1 and had surgery and chemo and no sign of reoccurrence until I experienced severe backaches fall 03. You sound like a wonderful friend. You might want to seek a second or even a third opinion if necessary. And make sure you let her know that there is so much hope when it comes to breast cancer. I didn't think I would be around for 6 months after diagnosis and it is going on 2 years and I don't feet like I'm going to check out any way soon. Blessings, Lu Ann.

Hi Kris, one of the most important things in this fight is that you have to be completely comfortable with your oncologist, we have come up against many who are not aware of what is available, and therefore are not willing to toe the line when it comes to being told there are options. I was lucky I found one straight up, in 1998, he turned 40 last month so I got him young and trained him, now he is one of the best in Australia, he has told his stafff to give me what I want and when I want it, I am one of his best research tools because he treats all cancers and doesn't have enough hours in a day to know everything. Because being HER+ is still widely unknown, there is no real prediction available, he tells everyone I should have been dead years ago but just shakes his head at me and gives a heap of his other patients my combinations without the Herceptin, over the last 3 years there have only been 4 of us tested HER+ at my hospital. I am convinced that the Herceptin has either slowed down the growth of my BC or mutated the cells so they are not as agressive. It doesn't matter how many times questions are asked here, there is always someone new out their wanting to know the same answers. We have a great archives of true and trusted treatments with encouraging outcomes. It is nice to have you along.

Love & Hugs Lyn

Kris, I replied at length to your private message and hope you have received it. You have received some wonderful replies here, and I agree with them all. This site can be a great blessing to Julie, as it has to all of us. Stay with us; we can give a lot of encouragement and love and inspiration, besides sharing our experiences. Give Julie a hug for all of us! Hugs, Tricia

Dear Kris,

How fortunate Julie is to have you as a friend; encourage her register and join us! If she is not comfortable with what she is hearing then absolutely she should get a 2nd opinion. Cancer is such a devastating illness that all oncologists are used to referring for 2nd opinions. Many of us have kids and the dilemmas that go hand in hand with this...encourage Julie to rest her head on our shoulders for awhile.
Love Kim from CT