oestrogen negative cancer.......ER-

Hi Beach Cottage 4
I did- I had what my surgeon said in his notes (not directly to me) was "particularly disturbing because of the amount of LVI invasion". I just don't know what he means by "particularly disturbing". But, my oncologist said LVI+ should be treated the same as node positive and I agree with that.

With respect to chemo, first let me say, I am a scientist and used to do research with cancer cells quite a bit. I no longer do bench work but now work in the area of natural medicine. (I, too, have been exposed to ethidium bromide, among other caustic agents.) It's a bit ironic that I use to look at these cells under the scope and now they are inside of me! Chemo is quite effective for growing/dividing cells, but as mentioned it doesn't differentiate between healthy and non-healthy cells. This is one reason the immune system is so limited when we are on chemo. And, the whole GI tract gets zapped big-time because those cells are some of the fastest dividing cells in our bodies. It is true that cancer cells that are totally dormant (not growing) will not be effected by the chemo, however, it seems that with these very rapidly growing cancers, most cells are dividing at some time during our treatments because I see many stories of women who don't have recurrences. I, too, wich for more of a targeted approach and hope someday that will happen.

In the meantime, I do think there are things we can consider post-chemo to regain health and hopefully prevent a recurrence. The docs who do complementary medicine in this area have some things they focus on with patients like us, and I know there ahve been soem postings on some of these already. For one, thinking about healing the GI tract. Because the GI cells grow rapidly, the cells knocked-out by chemo seem to get replaced quickly. However, some data suggests that the GI tract doesn't always get totally strong and healthy right away, so it may help to do some of the natural approaches to healing and strengthening the GI function.

Another thing to consider is to support the immune system. Our own immune system can destroy cells like cancer cells. The problem when we get cancer is that the cancer cells overcome the immune system. For example, feeling fatigued the year before may not be the result of the cancer but the result of something that is running our systems down (low-grade infection/inflammation) that then taxes our immune systems and if our immune systems are down, it can't fight off the few cells that have decided become a cancer anymore. They are some ways to promote healthy immune function. So, instead of tamoxifen, we have our own immune cells fighting for us.

Has anyone read the book "Healing outside the margins"? I may have gotten it off of one of the boards on this site, but I was told it was from soemone with inflammatory breast cancer who, like us, had little to do but the "wait and see" apprach after her treatment and came up with a healing plan for herself. She has been recurrence-free for many years. I am going to take a look at that and I'll let you know what I find.

Patti,
I experienced similar problem. I gained 15 lbs when on CMF in 1999 and haven't lost it. My digestion is also not as healthy as before (like you...heartburn & ulceric feeling..).

Now I'm on a treatment (Taxotere) again and very afraid to gain weight. I'm watching myself right now and will definitely put myself on either Weight Watchers or Jenny Craig once the treatment is over. Part of my problem this time is that I stopped going to the gym 4 months ago just before the surgery.

They do say walking is a good exercise if you do it regularly. Basically I think our problem is the same as any overweight person trying to lose weight. Have you thought about working with a dietician or nutritionist? They also say that doing a little weight is helpful too (if you have never done weight you may want to be careful not to injure yourself).

Lani

Marinza,

Very interesting, indeed!

Sometimes it seems like there hasn't been much progress with bc treatment and research in the 17 years I've been involved with it. But articles like this one make me realize there are a lot of scientists working very hard to find better treatments and, hopefully, a cure or prevention. And I also remind myself how well the taxanes, Herceptin, and other new chemo drugs work.

Thanks again for posting another encouraging link!

I am amazed about the courage of most of you to have endeavored these brutal regimens of AC and Taxol!! Especially when you had no nodes involved. I was so happy when my oncologist told me that CMF was fine for me (ER/PR-, her2-, 0/11 nodes negative, grade3).

Take care all! Keep up your spirits. M.

LaniT...you said you certainly don't want to take adriamycian again. You won't. I asked my Onc. if I could ever have chemo again, and he said yes, but not the same drug.

keep well all of you on this thread...it's so informative, and nice to know I'm not alone in this unusual hormone negative type cancer.

Hi there...I have been on an amazing adventure called life...and I want to share it with you...please read my story in Just Diagnosed...this is happening right now...true life and this minute....you decide...

KEEP GOD IN YOUR POCKET AND HE WILL PUT YOU IN HIS...

Lady JerBear

Maureen HeidiCat:
You are right, my oncologist told me she wouldn't use AC again, but she also eluded to the fact that if we are facing a met or something, AC is not totally absolutely ruled out. But basically she told be to just think about treating the current problem and don't think about metastasis when it hasn't happened yet and probably will not happen.

Marinza:
Geez, you keep coming up with good articles. It seems like you're actively out there gobbling up these news. Good for us getting the benefit of your labor. The articles or links that I have are obsolete because they're from a long time ago. Thanks a bunch for sharing those.

And a bit more on the same:

http://www.fhcrc.org/pubs/center_news/2001/jul5/sart1.html

Good news for ER- tumors!

Androgen receptor blockade a potential therapy for ER-negative breast cancer

http://www.oncolink.upenn.edu/resources/article.cfm?c=3&s=8&ss=23&id=10446&month=01&year=2004

Some of these links come up when I search for something else, this was a good one!
m.

Hello everyone!
I was 33 in July 03 when diagnosed. I opted for a double mastectomy and reconstruction which is currently going on. I have a sister who was diagnosed about 4 years earlier with bc and whose cancer has metas. Mine too is ER- and I am under 35 which is frustrating when reading studies. I did get tested and have the BRAC1 gene. BRAC1 is linked to prostrate and ovarian cancer. BRAC2 is linked to colon cancer. I appreciate the postings and information.

Just saw my doc for my post chemo check. He said due to my ER- status he wants to watch me closely - every 3 months. While it is comforting that I will be watched closely, it is not comforting to have the seriousness of being ER- being flashed before me. I am doing my darndest to be positive that this beast will never visit me again!

Brac1:
You made the right decision with bilateral mastectomy. You may want to be aggressive with your health care provider and ask for other screenings transvaginal ultrasound for ovarian & colonoscopy for colon.

JENG:
Yes, please be vigilant about checking your breasts. I suggest breast self exam. I caught all three of my breast tumors by breast self exam (mammogram didn't see them, but I was small-breasted). But either way, I think especially people on this board should do their breast self exam.

I am glad to have found this thread also. I am also er/pr -, but am her2neu+. Mine was .9mm, no nodes, grade 3. I have had 4 A/C and 3 Taxotere. My last taxotere is on Wednesday and then I'll be getting 34 rads. I am nervous about the fact that there is nothing to follow this, especially with all I've read about her2neu+. I'll find out on 3/17 when I meet with my onc what his follow-up plan is. He has said he will be following me closely and that he is in the 30% of oncs who feel that continued testing in order to catch any recurrences early is the way to go rather than waiting until symptoms appear to test.

Chris

Marinza -

I was way off on my estimate for genetic testing. I contacted the Virginia Piper Cancer Center in Scottsdale AZ (www.shc.org/cancer) to verify the private pay cost and for the 1st person it is $2900, second person tested would be over $350. It doesn't hurt to have your doctor do a referral and find out if insurance will cover it. Usually they will cover a consultation which at the least is very informative.