FEMARA

grandma, I think I can say with some certainty that you are the exception. Most of us find we GAIN weight on the AI's and Femara/letrozole is no exception, at least not for me. If the doctor says you are ok, then I guess that you just need to up your calories and fat. Honestly, in my life, I have never had that problem so I am no help. Best to you as you figure it out! Have a hot fudge sundae for me, ok? xoxo

Hi Lala1,

A question. What is oncotype testing. Can it be purchased?

Tamoxifen after 4.5 yrs has created an abnormal lining so I must stop. I now have to be tested for endometrial cancer from tamox. Think I will simply retest in 3 weeks with TVUS and if womb lining back down to < less than 5mm I will not do testing. (Apparently it really hurts.)

BUT! My oncologist wants me to take Femara but I have osteopenia and she said I would need to take a steroid to counter the effects on my bone. I don't want to but I just looked at my stats as explained by my oncologist using adjuvantonline.com. Using my stats, Stage 3A, Lobular, 2/3 nodes positive, 100% ER positive, all else negative.

(OVER 10 YRS) 50% chance of reoccurrence with surgery only and 30% reduction (to 33.6%) with 3rd gen chemo and 5yrs tamoxifen. 26% chance of death with 15% risk reduction with same, so 22% chance of death, that is more than 1 in 5. Reocurrence score is 33.6% over ten years with existing treatments.

What to do? I need more reference material. Oncotype sounds like the answer. Help.

amazon

Yes. Oncotype determines whether you need chemo or not. Usually your doctor orders the test and insurance pays for it.

As to the endometrial lining, a TVUS can help your doctor keep an eye on any changes. That procedure doesn't hurt...or at least it didn't hurt me. If they need to do a biopsy, there is some discomfort involved but I didn't think it was bad at all, especially compared to all the mastectomy stuff. Your doctor can give you something to take the edge off before they biopsy. Maybe ask your doctor about the BCI (Breast Cancer Index) test. I don't know anything about it other than it can give more info on whether to keep taking your endocrine therapy (Tamoxifen or AI). There are some threads here on BC.Org that talk more about it.

Grandma, no, same here. I think my hormones have always been a bit messed up. I developed late and didn't really fill out until my mid-20s. Until that happened I was skinny and infertile, probably from lack of estrogen. Now that I am estrogen-deprived, I am back to being skinny.

Momine - thank you for your input. I was always thin until a few years ago and then started packing on the extra pounds. Not a lot, but maybe 6-7 pounds in 2 years. During this time, my cancer grew to 5 cm - I could feel it but it never showed up on mammo or ultrasound. Now that it's gone I wonder if there was some connection, like my cancer was directing my body to make fat to feed it estrogen. My weight loss started before I went on Femara, so I can't blame it on that, but I did expect the weight loss to slow down once I started on the drug.

Grandma, I too gained weight in the years leading to my dx, and it was unusual for me. I normally ahd a stable weight. I also had ILC, by the way. I too wonder if there was a connection. I went to the doc about the weight gain, but because it was not extreme by medical standards and because I was still well within normal BMI, I couldn't get any doc to take me seriously

Grandma, I am willing to be a fat donor, free of charge!

I never noticed that I smell like medicine but I do "sweat" more due to hot flashes. I smell like deodorant, body wash and sweat if that makes sense. I HATE it! I don't feel I smell like a woman anymore either - at least not the woman I was. I definitely credit the letrozole with this lovely side effect. Ugh!

I recently started Femara (Sun brand) and the fatigue is overwhelming. I'm not able to function, am so exhausted. Have others had this side affect?

GG27.....I've been on Letrozole for awhile now. But I do remember being dizzy in the beginning. It only lasted a few weeks. Maybe it was my body adjusting.

OceanSky....how long ago did you finish treatment? I was fatigued for awhile after finishing radiation but slowly go my mojo back. I think I was exhausted from the dx and then all the treatment. I've been on Letrozole for awhile and am back to normal.

I am having hair thinning. I guess you could say loss. Also cholesterol upas well. Trying to get it down so I don't have to go any other meds.

no fatigue. Taking accord brand.

BosumBlues- I have also noticed that I smell different, as has my husband.I have been on femara for about 6 or 8 weeks now. I'm hoping that this is one of those effects that goes away with a little time!

Otherwise, I seem to be tolerating femara pretty well. I'm not tired and joint pain is minimal.

April485, are you on a statin? I had terrible muscle and joint pain when I was taking a statin and letrozole at the same time. I would wake up at night hurting all over and it was painful to bend my fingers. I also felt like I was slogging through mud all the time. When I separated the dosing of the two meds - letrozole in the AM and statin in the PM - most of that pain went away. It was like a miracle!

I have to correct what I said earlier about no warning labels on the letrozole. I haven't paid attention to them, dumb me. Both brands Teva and the newest one Apotex have the red warning label for dizziness.

Sorry if I misled anyone

Faith (in the future