If anyone knows anythng about this drug and is willing to share, I'd appreciate it. There's a chance my sister may be going on it after her surgery and radiation. Thank you...

Been there, done that. Had the recommended 5 years and am now on Femara (Letrozole.) Being active in the survivor community, I know at least 40 other people who took or are currently taking Tamoxifen. Tamoxifen has been studied for at least 20 years, with a lot of research and clinical trials. I have tons of info, but will start with some basics.

Indications: ER (estrogen receptive) positive tumors only. Tamoxifen is mostly ineffective on ER negative tumors. ER + or - is determined by testing a tissue sample taken during the biopsy or other surgery.

How it works (in fuzzy lay terms): Tamoxifen creates fake receptors so existing estrogen will bond to the fake ones as opposed to the real. Estrogen-based cancer can't thrive on the fake ones.

The standard # is, Tamoxifen will reduce the chance of recurrence by 50%. I was given 40% chance of recurrence; with Tamoxifen, this was reduced to 20%.

Risks: 1. slight increase in uterine cancer. Uterine cancer is always slow growing and can be contained by a hysterectomy. Twice a year, I saw a gynecologist who specialized in cancer patients.
2. blood clots, which are potentially fatal. Risk goes up with overweight and smoking. Blood clots linked to Tamoxifen have not been recorded in average weight women under 50 years old. I personally don't know anyone who got blood clots or uterine cancer on Tamoxifen.

Side effects, at least 75% probability by my unscientific observations: 1. weight gain. I know women who put on 50 lbs. in 6 months. I gained 9 lbs. in 2 months, and I was eating less. To put this in perspective, I had only gained 5 lbs. since high school graduation prior to that. The way I look at it, my food thermostat broke. 2. hot flashes and night sweats. The more overweight and inactive a woman is, the more likely these are. Lucky me never got a one.

What your sister needs to know is what her projected recurrence risk % is. That will help her assess her risk vs. benefit in taking this. If she's ER -, I'd say don't.

Meredith, this is so helpful. I'm going to print it and give it to her once her surgery is behind her.

I'm grateful that you've met with success from your procedures and medicines. You're an inspiration.

Is there a reason they switched drugs for you?

Thanks so much. I think it's best to hear information from people who have been there, done that!

I appreciate your willingness to share this information so much! Bless you!

[ May 16, 2004, 03:43 PM: Message edited by: Dotsie ]

Dotsie,
My mom used tamoxifin after her mastectomy a few years ago. Of course, she's older, so that's a factor. But she suffered from mini strokes (blood clots) and hasn't been quite up to snuff. She also developed eye problems, another of the "side effects." My sister convinced her to quit taking it. There's tons of info on the internet about it, and some of the latest studies aren't all that good. I'm sending you a link.

Here's a website by a woman from near where I grew up. It seems to contain a lot of up to date information about this medication.

The site also includes a lot of other information that might be of interest to a lot of us.

http://www.innerself.com/Health/tamoxifen.htm

smile

How funny -- that's the exact same link that I emailed to Dots! scary stuff.

DJ and Smile, thanks o much for thinking of my sister. I will print this information and share it with her.

The doctor shared 3 new drugs that were possibilities. We shall see.

DJ, I hope you have regular mammograms. The doctor who sent my sister to have her cyst biopsied only did it because of her family history. It got by the radiologist, but her GP knows the family and chose to send her just in case. My mom had cancer and her mom had a mastectomy. Always make sure you share your families health history with your doctors.

Actually, funny you should ask. No, I don't. I'm really ambivalent about mammograms and my gynos never urge me. My mom -- who also took estrogen replacement for maybe 35 years -- had them regularly for years but found the lump herself. That's a story I hear over and over again. Do they really detect cancer, or is it a PR hype?

Here's a website about a Toronto study that questions the effectiveness of mammography in identifying early breast when compared to regular breast exams.

http://www.newsandevents.utoronto.ca/bin1/000919a.asp

Lots of women don't do BSE, so mammograms are necessary, and apparently there are few side effects, so....
smile

smile

I switched drugs because after 5 years Tamoxifen is less effective and the risks go up. Femara completely stops estrogen production and is for 3 years if no contraindications.

Thanks for all the insight for my sister. Lots to consider.

Speaker, you're right about the drug reps. My husband is an eye doctor and he has reps dropping off every kind of new drop you can imagine. All anyone knows is what they've been told by reps, who have been told by the drug companies, who are trying to make the big bucks. That's why we need to do our own research.

I've found that we can educate ourselves better than some doctors if we are willing to research.

My youngest sister was famous for this when my mom was diagnosed with lung cancer. She was on every kind of site you could imagine corresponding with people who knew more than she did. At one point she recommended a drug to Mom's doctor for Mom. He reviewed it and thought it wasn't the best drug to try, but thanked her and said he bookmarked the site she recommended because it was one of the best he'd been on and he didn't know about it.

As we've said in here before...we are our best advocates!

I know women whose cancer was found on their mammogram, and women who detected it themself. I found my lump via BSE 1 month after a mammogram which said I was totally fine. If I hadn't done BSE I probably would've been dead by now, as I wasn't due for a mammogram for another 2 years.

I say play it safe and do both.

Meredith, I have sat through most of my sister's appointments for her cancer and everything you said about the tamoxifen was right on!

Do you mind sharing why you continue to take a prescription drug? Her dctors are talking about 5 years.

Dots,
I tripped over this site but on Thursday I saw a promo at Hopkins on Tamoxifen and another drug. They were having an educational seminar for the public but I did nto note when. It was in the Sydney Kimmel Cancer Foundation Center. If that helps and you are interested.

I was shocked to hear about your sister. I ahve been in and out of the forums because life has drug me away. I am so sorry and will put her on my prayer list. What hospital is she working with?

Lynn

Lynn, thanks for the info. It looks like they are going to choose a drug other than tamoxifen.

She is doing very well. Her doctors are at St. Joe's. By the grace of God this was caught in the very earliest stage. The radiologist tolld her things were fine and to come back in a year. Her gyn didn't cathc it. Her GP saw a change in her mammogram and called her to tell her he thought she should have a biopsy. Sure enough!

She had her lunpectomy and begins chemo next week. The silver lining in this cloud is that she doesn't have to do chemo! 33 radiation treatments and 5 years on a drug.

I am so proud of the way she's managing this. She's a trooper and such a blessing...as always. I love my big sis. Makes me tear up just writing about her!

Thanks for your concern. I appreciate it.

[ June 07, 2004, 12:41 PM: Message edited by: Dotsie ]

Dotsie, to reiterate: I took Tamoxifen for 5 years (the recommended duration) because it lowered a 40% chance of recurrence to 20%. Now I take Femara (Letrozole) because clinical tests show that women who took Tamoxifen for 5 years, then Femara for 3, have a (50%?) lower recurrence and death rate than women who didn't do the Femara. Because of my initial high chance of recurrence, I feel it's worth the risks.

I am 37 year old and was diagnosed with breast cancer 2 months ago. Everyone was shocked because I am incredibly healthy, active and very small chested. My cancer was found on a mammogram. It was so small I could not feel it. Even my primary doctor (after seeing the placement on the mammogram) could not feel it. I opted to have a bilateral mastectomy and am currently going through reconstruction. The mammogram likely saved my life or at least saved me from going through chemo. I would recommend anyone over 30 to get them yearly.

Susan Stewart
http://www.perfectlyplaced.org

Susan, I'm so sorry to hear of your battle with breast cancer. My Mom went through that, as did several other female relatives, so I have to get a mammogram every year now. Your experience and reinforcement of the need for mammograms could very well save a life here. Thank you for sharing.

Brucejoy, welcome to the forum and thanks for sharing your knowledge on this subject. I will add you to the prayer circle....

Brucejoy,
I echo everyone's welcome to you and want to share that my Mom had breast cancer and her left breast was removed. That was almost five years ago and she is fine!

But I'm very upset with YOU. I just visited your web page and you don't possess ONE SINGLE WRINKLE. How old are you? 10?

Have you girls noticed that it seems like everybody that joins here is beautiful? And that's inside and out.

Welcome friend. You have a home here but only if you go out and get some wrinkles, k? What? Hey, I got um...she should have to have um too!
(Queen hiking up robes and leaving room in a huff)

If you haven't dropped in on her web page, you need to. It all about getting organized. Wuhooo! Boy, could I use that or what? Make sure you look at the pic's so you get a feel for her expertise!

JJ

She looks like the typical Arizona woman. "We" are just hotties by nature.

I lived in Scottsdale/Prescott area for years. My three oldest children still live in AZ. So, how are you enjoying that heat?

I was looking at your before and after pictures and thinking I needed to hire you!

Glad you found us and you are in my prayers.