Tami

Thank you so much for responding to my question. I appreciate you candor and suggestions. I hope we can continue to converse.

Your posting on my wall did not mention taking Zometa. I am reading a book named "The End of Illness" by David Agus M.D. It is not strictly a cancer book, but Dr. Agus is an oncologist so he mentions a lot of examples that are about cancer. He quotes a study published in the NEJM in Feb 2009 about Zometa. Let me quote: "Those who received the bone-builder experienced a reduction in their recurrence of the cancer by 36 percent. Here's the stunning part: this particular drug doesn't even touch the cancer. This case demonstrates that if you change the soil (breast cancer classically metastiasizes to bone), the seed (the breast cancer cell) doesn't grow as well. The drug changed these women's systems, thereby having a marked effect on their cancer."
Tami, you definitely need to be on Zometa or its equivalent Reclast. It will make it hard for the cancer to make any headway in your bones. I have been on it since my diagnosis and it is only recently it has begun to give me unpleasant side effects. I plan to talk to the doctor about the frequency of infusions, but I will continue taking it because I want to survive. I will learn to mitigate the side effects as much as I can because the Zometa is so important.
I know you won't agree with me, but I consider you lucky as the disease hasn't metastized to soft tissue. All the oncologists I consulted said the disease progresses faster in the soft tissue. At my diagnosis, the cancer was not only in my bones, but also my stomach and colon, and later it went into my liver. The doctors who would give me a timeframe said I had 3-4 years. I just passed 3 years in August. The chemo got rid of the cancer in my liver. My stomach and colon seem to be working okay, no cancer activity. My pet scan showed only a little activity in my bones. Thanks to a combo of hormone therapy, chemo, and Zometa and a doctor that stays on top of my case, I have hope that I'll outlive the odds.
Hang in there, Tami. Talk to your doctor about Zometa.

Tami, I really appreciated your post on my wall. You talked about having side effects from your treatment. I hope you will share more info about that with me via email. I must say, it had to be quite a shock for you to be diagnosed at age 49. Way too young to have a disease threaten your life! I was 62 at my diagnosis, one person working in the field said I'd probably had the disease for 5 to 8 years prior to my diagnosis. Luckily, I guess, I was taking Evista for my bones which is chemically very similar to Tamoxifin, so I was in effect treating a disease I didn't know I had. I keep my perspective by realizing that kids get cancer too. My heart bleeds for them and their parents. It has too be hell on earth for them!

I learned recently that if you have a first degree with two different cancers, you have a 1 in 4 chance of getting cancer. My dad had (and beat I might add) both colon and prostate cancers. My odds were good that I'd get cancer too. I don't regret that I didn't know those odds, because I did everything I was supposed to. I got my mammograms regularly etc.

To answer your question about bones. Yes, I take Zometa every other month now. For quite awhile I took it every month. I luckily have also had little to no side effects until recently. Now about a week after treatment, I feel like I have the flu. My temperature varies, up and down. I break out in sweat and my temp drops way below normal, but I quickly recover to normal temp. The temp. changes make getting good sleep almost impossible for about a week. I also have terrible bone pain during these episodes. I guess the Zometa and the bone lesions are duking it out! It is good pain, but still pain. I am going to talk about this with my doctor next month. If I have to have the Zometa so often, I need to figure out how to manage the side effects so my days are a bit less hellish!!

It is encouraging to me that you have made it 4 years. I think you are beating the odds! You just keep on keepin' on, girl!!