FEMARA
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JerseyGirl, you are so right on target about feeling like the body cannot regulate itself with hot and cold temps. I hate that internal feeling you get seconds before the boiling temps occur. Mostly, its really embarrassing when you are sweating like a pig in a social environment or when meeting clients face to face.
Also, spot on about having a voracious appetite. I eat more than my husband now and he is twice my size. My clothes are too small but I refuse to go buy bigger clothes. Tamo caused weight gain and I was able to loose about 15 lbs but I had starve myself to do it. I had a nutritionist trying to get me to maintain on 500 cal per day. It was very hard, do'able but not for long periods of time. Right now, I think I just no longer care.
I will try the vit supplements as mentioned. I did take Aleave last night and it seemed to help with the joint pains some. However, I don't want to take something like that every night. I have to visit with my oncologist this week, I will see what he suggest.
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Cidneyl---Wow! You had a nutritionist tell you to only eat 500 calories a day! I've always been told to never eat less than 1000 and preferably 1200 a day. How could anyone survive on 500 calories a day?
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Am I the only one on Femara who is having trouble maintaining weight? I thought I might have cachexia for awhile, but no evidence of disease. I eat a lot and often, but try to do mostly fruits and veggies with a bit of protein at every snack and meal. I've lost 25 lbs. from 146 lbs in January when I had my MX. Now adding more fats to my diet.0
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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
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Thank you, April. I also have never had this problem before. I have tried for years to get my weight below 140 with no luck. As soon as I had surgery I started dropping weight like a stone and was down as low as 118. I've since gained a few pounds and holding steady at 121.
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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
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damazon, I think (but I could be wrong) oncotype is only for recommending chemo or not, not the tamoxifen and/or anti hormonals. Those are determined by your positivity for estrogen. I hope someone who knows for sure pipes in soon. Best to you on the lining of your uterus issue!
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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.
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I was 146 lbs after my surgery. Size 10 Looked great 20 months later I'm almost 20 lbs bigger. My husband is 5 inches taller than me and we are almost the same weight. I eat about 1500 cal and gain. Haven't been this size since 7-8 months pregnant. Letrozole did it.
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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.
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Well I started my new poison today. Been off anastozole for 3 weeks and feel almost normal mentally and physically. Hopefully that can continue on the femara. Fingers crossed as I am loving feeling normal.
Karenaus
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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.
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Thanks Lala and CT!
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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
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Interesting. I gained a little weight (unusual for me) in the few years before the first ILC diagnosis. I have assumed it was because I was too tired to exercise enough because I was anemic, vitamin D deficient, and was (unknowingly) trying to fight off cancer. I lost the weight during the diagnosis and treatment (surgery, radiation) months, then gained it back gradually. I'm hoping it doesn't continue to creep up now that I am post-menopausal on letrozole.
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Grandma, I am willing to be a fat donor, free of charge!
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I asked a question here regarding Femera, a page back & 10 days ago & was hoping for some insight as I've just starting taking this drug. Anyone else experience shakiness in their hands & light headedness? I don't get it everyday but often enough to think it may be a side effect for me. The Dr just told me to eat something, but doesn't really seem to help. thank you, dee
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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!
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GG27 - I've been on Femara for a while now and have not noticed that particular side effect. However, I did notice a bright red warning label on my prescription bottle that I just renewed, that warned of possible dizziness. My previous pill container did not carry this label, so I never looked for light headedness as a side effect. I do have some joint pain and loss of hair volume. Overall, compared to Arimidex, Femara has been manageable for me.
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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?
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thank you janetanned. I do not have that warning label on my prescription.
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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.
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Ocean, I am a little more fatigued than normal but I am also getting older so that could be it. I have no hair loss to speak of but the joint and bone pain is tremendous all of a sudden. The first 7 months, it was livable in comparison to the exemestane...now, not so much. It is different pain than I had with that drug. It feels like I have a bad flu. I am achy all over but mostly my legs feel as though they weigh 5 x what I weigh. I don't know...
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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.
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I have a recurrence a year and 7 months after my original mastectomy. So just started Femara. Am going to have chemo, rads, and surgery last. Am leaving this weekend for M.D. Anderson in Houston.
My fatigue is like a bad flu but more exhaustion. Am taking Sun brand and wondering if I should try to find another brand of Femara. I fall asleep a lot and take long naps in the afternoon. Not getting anything done because of the fatigue.
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no fatigue. Taking accord brand.
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I go see my oncologist today. I will tell him about the side effects I have with Letrozole and he will just tell me to suck it up buttercup like he did when I told him how miserable I was when on Tamo. I just don't know what to do anymore other than to work through it the best I can.
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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.
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Grandma, I have lost weight too. I am down about 9 pounds in a year. Most people would love that, but I am definitely on the bottom of normal for weight and can't afford to lose any. I do eat healthy and exercise, but I eat a lot, and have been trying to gain weight.
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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!
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