Triple Negative Breast Cancer

Replies to This Discussion

Permalink Reply by Caroline on March 9, 2008 at 9:12pm

go ask this question on the message boards at www.komen.org. There are some women there who are triple negative and can send you to the site for her2neg help as well. Good luck.

▶ Reply to This

Permalink Reply by Marilyn on March 12, 2008 at 7:54pm

Will do, thanks! :)

▶ Reply to This

Permalink Reply by Ramona on July 9, 2008 at 7:41pm

I have triple negative breast cancer. It was found in April 08. I only know that it has a high risk of coming back, high risk of brain cancer, and its hard to respond to treatment. I will be glad to give you more info as I know it. If you find out anything let me know as well...Keep intouch

Ramona

▶ Reply to This

Permalink Reply by Kris on October 13, 2008 at 12:13pm

I have it also but if it makes you feel any better, I actually read several times in my research that it responds very well to chemo. Also the Her2 negative status is good - much less agressive. Docs think it is "bad" because they can't give you Herceptin (which is very cardio toxic and has lots of other side effects). They think the same thing about ER/PR- because you can't take Tamoxifan - another drug full of lovely side effects like causing endomitrial cancer. Also, while it does have a high recurrence rate, that rate peaks at 2-3 years and then goes down drastically. After 7-8 years it is very low. With ER/PR+ breast cancer, the rate remains relatively constant over the years.

So it's not all bad news!

▶ Reply to This

Permalink Reply by Danielle on October 13, 2008 at 12:20pm

My doctor also told me triple negative responds well to chemo. He said the same things about recurrence as you have said.
I had a friend who had to stop taking herceptin because it was damaging her heart and from what I hear about tamoxifan I do not think I would want to take it. I am holding on to the research you have listed. I just read a good research piece by Dr. Susan Love, it gave me more hope.
Danielle

▶ Reply to This

Permalink Reply by Kris on October 13, 2008 at 12:24pm

I also felt that it was actually a relief not to have to take Herceptin or Tamoxifan. I doubt I would have taken either. A nutritionist that I've worked with told me that every single person she know who is on Tamoxifan, also has to take an anti-depressant.

▶ Reply to This

Permalink Reply by Jen B on October 17, 2008 at 6:34pm

And they've gained boatloads of weight. I also declined Tamoxiphen.

▶ Reply to This

Permalink Reply by Brenda R-M on July 10, 2008 at 11:38pm

Hi. Yup. Unfortunately I know about it. I have inflammatory breast cancer which accounts for only about 5% of breast cancers overall AND it is triple negative. And here I sit all white and northern European in ethnicity. So who knows.

I am stage 3 and at "high risk of metastatic cancer" per my docs. So, right now I am a real test case. I have healed well from surgery and am about to start radiation. The plan is to kill any remaining cells in the local area and then fight systemically again. After I do radiation I'm going into a 15 week chemotherapy plan. Three drugs, once a week. And the whole thing is an experiment. A best guess by really smart docs.

Our dog pulled me across the street last week during a walk to meet another one of his fans and it turns out this lady is battling a recurrence of breast cancer, not inflammatory, but it is triple negative. So my pup has my back!

Tell your friend she isn't alone. She gets to pioneer too along with some other really tough and amazing ladies.

Brenda

▶ Reply to This

Permalink Reply by Danielle on October 13, 2008 at 11:56am

I am triple negative as well. I have medullary breast cancer which is pretty rare as well. I am stage 2. I had surgery back in May and just finished 16 weeks of chemo. I will start radiation next week. It is nice to talk to other triple negative survivors.
Danielle

▶ Reply to This

Permalink Reply by Martha on October 17, 2008 at 4:16pm

Another triple negative signing in! Also Caucasian/north European...go figure.
I am reassured by the reasoning that the docs think it's "bad" to be triple negative because they can't use Herceptin and Tamoxifen... when I was told it was "aggressive" and a "bad actor," my anxiety level went up several notches.
I begin chemo on November 5, an 18-week regimen, to be followed by radiation. I'll be interested in keeping this discussion alive!

▶ Reply to This

Permalink Reply by Rebecca on October 20, 2008 at 8:49pm

Hi Marilyn, I am a triple negative bc survivor..I really dont know much about it..I only know what my oncologist told me..I was told..that its not a bad thing or a good thing..it just is...sorry I dont have more info for you..but I have been meeting allot of people who are triple negative..good luck to your friend.. :)

▶ Reply to This

Permalink Reply by iris on October 30, 2008 at 2:26pm

I am a triple negative gal as well. Asian. Unfortunately, my went from stage ii to stage iv within 4 weeks of my lumpecomy. I just finished 3 months of weekly chemo with Avastin and Taxol. I don't think the tumors responded much to the drug as I can feel the lumps are still getting bigger on my neck (where the cancer metestized). Will find out what my doctor will recommend for the next regiment tomorrow. It is a scary time. I try to stay positive, but it is getting harder and harder.

Please share the type of chemo drugs that your doctor is putting you on for all the triple negative gals that sees this post.....

Iris

▶ Reply to This

• 1
• 2