FEMARA

twolumps

Well, hi, y'all. I just completed 3 years of anastrazole in January. Due to possible side effects, my MO said we could try a 4 week holiday and see if some of them cleared up. Voila! My memory is BACK! My vocabulary is back, I'm not hot ALL THE TIME and I've lost 5 pounds in 4 weeks with relatively no change in diet or exercise. Unfortunately, my MO wants me to take Femara/letrozole now instead. She said we could do a BCI in a year or so to reevaluate whether further AI treatment would benefit me. Boy, I hope not. This holiday has been wonderful! I've read that the SE's from letrozole are basically the same as anastrazole, but as she said, everybody reacts differently. Here's hoping I get to keep my memory, metabolism and energy level.

Lula73

two lumps- hoping you have better luck with Femara. I just have a few minor SEs that are completely bearable.

MO-Beth

twolumps, I have NO hot flashes from letrozole. Matter of fact, I'm FREEZING to death all. the. time. I've been taking it for about a year. I even told my oncologist I wasn't hot flashing and she did an extra blood test to make sure it was "working"? And it was. (I live in a podunk town, but I travel to our major metro area with a renowned hospital for medical care.)

Weight/metabolism: I'll be 58 years old next week and I've needed to lose about 50 pounds for years now. So when I was diagnosed with breast cancer and they told me that a) being overweight is a risk factor, could cause breast cancer; and that b) the drug they were going to prescribe to make the breast cancer not come back would probably cause weight gain, I immediately hooked up with a doctor and got some FDA-approved diet pills and have (pretty much effortlessly) lost 40 pounds this year...10 more pounds to go. Yay!

RANT: And by the way, I got the 'talk' from day one from my oncologist about the studies I could sign up for, one of them was the obesity study. It consisted of somebody calling me and asking me what I ate once a month...are you serious LOL... I've tried every diet you can name. ANYWAY, I've been to my oncologist four times this year...lost 40 pounds since I've met her. Has she noticed I've lost 40 pounds? I mean, they're charting it, for goodness sake! If so, she's never said a word...END OF RANT.

ANYWAY, don't be afraid of letrozole Give it a chance...

marijen

I find my doctors have short memories and don’t read my chart either. I lost 10 lbs and PCP should have noticed since it was in a few months. She didn’t. I haven’t heard of anyone on diet pills here, would you tell us the name? I am cold all the time due to hypothyroidism. Has your TSH been checked? When I was on letrozole I didn’t gain weight or have hot flashes. I don’t understand why it would cause weight gain. MO beth. You might like to go to Treating Estrogen Sensitive Cancer Naturally in Alternative treatment. We have been discussing the benefits of daily fasting and other things besides weight loss that can lower the possibility of recurrence.

Shelly52

Two lumps- did you notice any change to your hair during or after your 4 week vacation? Best of luck to you on Femara!!!

MO-Beth, good for you on the weight loss !!!! So strange your doc didn’t notice.Would also like to know the name of the FDA approved diet pills and if you had any side effects from them. Thanks!!

Lula73

since everyone is asking about the FDA approved diet meds and thats what I do everyday, I'll give you guys a complete rundown:

Phentermine-stimulant diet pill that increases blood pressure and may suppress appetite. Only approved to be taken for no more than “a few weeks". Most doctors won't prescribe more than 3 months. See section 14 in the link below to read description of efficalcybin clinical trials. Contraindications/warnings include hypertension, afib, other heart/arrhythmia problems or if you're on another stimulant medication. https://www.accessdata.fda.gov/drugsatfda_docs/label/2012/085128s065lbl.pdf

Qsymia-combination pill that contains low dose of phentermine and topiramate (a migraine medication in the triptan class). You get benefits of phentermine above plus additional appetite suppression. Average weight reduction in non-diabetic completer patients in clinical trials was 13% from baseline body weight (based on average starting weight in the trials of 241lbs for a 31lb loss.) Approved for long term use but many docs don't like to keep patients on it long term due to the phentermine. Same contraindications/warnings as phentermine plus contraindication/warning if you're already taking a triptan for migraines. https://www.accessdata.fda.gov/drugsatfda_docs/label/2012/022580s000lbl.pdf

Belviq- reduces appetite by activating a specific serotonin receptor in the brain. Average weight reduction in non-diabetic completer patients in clinical trials was 8% from baseline body weight (based on average starting weight in the trials of 220lbs that is 17.9 lbs weight loss). Approved for long term use. Warnings/contraindications include risk for serotonin syndrome if you're already taking an anti-depressant medication or other class of medication that increases serotonin levels/serotonin activity. Use with caution if you're taking other medications that are metabolized in the CYP450 pathway of 2D6 as the effect of those medications can be increased significantly by Belviq's action in that pathway. https://www.accessdata.fda.gov/drugsatfda_docs/label/2012/022529lbl.pdf

Contrave- combination of naltrexone and Wellbutrin. Naltrexone (aka Narcan) reduces appetite by blocking the receptors in the brains limbic system associated with reward while the Wellbutrin works on the hypothalamus to help regulate appetite. Average weight reduction in completer non-diabetic patients in clinical trials was 8% from baseline body weight (Average baseline weight in the trials was 219.56lbs with average weight loss of 17.5lbs.) Approved for long term use. Warnings/contraindications include hypertension, antidepressant use, opioid/opioid agonist use (pain meds), history of seizures/seizure disorder, MAOI use, hepatic or renal insufficiency, meds that are metabolized in the CYP450 pathways of 2D6 and 2B6, and OCT2 drug transporter (many of the acid reflux medications both prescription and OTC fall in the category). https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/200063s000lbl.pdf

Saxenda- GLP-1 receptor agonist that regulates appetite/satiety in the hypothalamus. It's activity reflects that of the naturally occurring satiety hormone GLP-1 that our bodies make in response to food intake to help increase the feeling of satiety at meals and in between meals. Average weight reduction in non-diabetic completers in clinical trials is 9.2% (average starting weight was 233lbs with average weight loss of 21.4lbs). Approved for chronic weight management (weight loss and maintenance of weight loss). Contraindications/warnings include family or personal history of medullary thyroid carcinoma or MTC (very specific rare type of thyroid cancer), history of medullary endicrine neoplasia syndrome type 2 or MEN2, history of pancreatitis, special instructions for use in conjunction with certainty is eyes medications. https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/206321Orig1s000lbl.pdf

*Note that the descriptions above are basic and do not include all of the data about the medications. I am not making any personal or product claims about these medications. Please see each medication's Full Prescribing Information leaflet in the provided links for a complete view of each medications efficacy and safety profiles.

Hope this helps!

MO-Beth

marijen, yes! I'm going to check out that alternative section tonight! I'll look at my latest blood readings and see if anything about TSH is on there. My oncologist is very good about ordering any tests I'd want. I know thyroid would require more testing, but we'd probably start with blood. Thanks for that info. I don't know or remember why I thought/heard letrozole would cause weight gain, but I just remember at the time thinking, OMG, I am NOT going to end up 100 lbs. overweight. I will NOT.....

Shelly52, I think she noticed, really. She just hasn't 'acknowledged'. She's in doctor mode. She could lose about 100 lbs. herself, actually. She's nagging me about exercising lately. She just joined a gym. I have a great gym in my basement, but do I exercise? Nope! I hate exercising. When I lose these last 10 lbs., I'm dreading it, because I promised myself that I'd start at least walking on the treadmill a few times a week.

The diet pill is (are) low dose of phentermine and topiramate (which is the same thing Luna mentions as the Qsymia-combination pill) but it's just these two prescriptions, not Qsymia. The first couple of days I took them, I was really jittery, but that went away. After that, nothing. I can't feel anything, so much so that I forget to take them sometimes, except I'm not hungry. Some people do have side effects, though, from the topiramate: Slow thinking, inability to concentrate, numbness.

Luna, what do you do every day? Are you a diet doctor?

gkbuser

twolumps, I have been on letrozole for almost a year. It is not that bad. I know it is scary when you scroll through post after post and read horror stories. You may do just fine. 😊 and I am losing weight on it.

Germangirl16

A couple of questions. Has anyone on letrozole been taking melatonin 20mg for estrogen receptor cancer, and how are you doing? Did you keep letrozole at full dose or decrease it?

gkbuser

Germangirl. I take melatonin 30mg every night. I am doing pretty good I take my full dose of letrozole. I still have 4 yrs and one month to go. How are you?

Anonymous

I take a 3 mg melatonin tablet about an hour before bed, and it does help me fall asleep. I only recently started letrozole - was on tamoxifen before, and took a long break in between. I'm cautiously optimistic that I'm going to tolerate letrozole better than tamoxifen. SEs minor so far.

Germangirl16

Sounds like we're in the same time frame, 4 more years for me too. I'm 66, feel 86 which I attribute all my aches and pains to letrozole. Exercise and eat very healthy, but nothing helps. What time do you take your melatonin?

gkbuser

kiki, good luck! I had a friend who took both and preferred the letrozole so hopefully it will be just fine for you too! Germangirl, i was 51 at diagnosis 52 now. I am also on zoladex shos monthly to be sure I am in menopause as it was not clear since I was on birth control at diagnosis so that may be making it worse but I definately feel older than my age. I just tell myself that must mean the medicine is working well. I take my melatonin about 9:30 pm try to go to bed around 10:30 or 11pm. I find higher doses of motrin (my MO said I can take 800mg) yoga (that I just do on a DVD at home) and hot baths are getting me through. I love the Dr. Teals bath salts I buy at Walmart.

gkbuser

kiki just saw we have a similar diagnosis. 😊. Gemangirl we do have a similar time frame.

Anonymous

Thanks, gkbuser! I'm glad to hear letrozole was a good choice for your friend after tamoxifen and hope it will be for me too. Yes, we do have similar diagnoses. I saw your earlier post that you've been on letrozole almost a year and it hasn't been too bad. Thanks for sharing that - it's encouraging.

Shelly52

I was on letrozole for about a year before switching to Aromasin due to hair loss. During that time I noticed a gradual lessening of achey bones and joints. I don’t know if it was due to time or due to the supplements my MO had me try. I take 1calcium chew, 4000 mg Vit D, Vit C, and she recently added Magnesium which immediately eased my leg cramps and restless legs. I also take 2 fish oil and Glucosamine Chondroitan. Oh! And 10,000 Biotin. This regime seems to really work for me. I have aches in the morning and after sitting a while but overall, it is quite manageable.

I’ll be switching back to letrozole soon as I have gained 15 pds on Aromasin. Ugh!I did not have that issue with Letrozole.

Germangirl16

Most of the research indicates 20mg of melatonin for estrogen oncostatic effects. I'm up to 16mg and slept really well last night without any side effects this morning. Hopefully this will be a win-win, good sleep and estrogen suppression!

Anonymous

Shelly, I saw that biotin is in your regimen. Did you start taking it to address the hair loss, or were you taking it all along? I was thinking of asking my MO about it. I had hair thinning on tamoxifen, but haven't been on letrozole long enough to know if I'm going to have the same problem. Luckily my hair is naturally thick and wavy, so it wasn't too noticeable, and I took a long break between the two drugs. Thanks!

Jumpship

If I have all my 'lady parts' removed do I stay on Femara? New OB said with tamoxifen and femara now my ovaries have stopped working- but if that is 100% true why are we on femara

gkbuser

Jumpship, so femera addesses a diiferent form of estrogen production. Once your ovaries are no longer producing from either natural menopause, chemical suppression or removal then your body still produces estrogen by converting androgens to estrogen via aromatase. Femera is inhibiting that process. So of course your doctor will decide but most likely they will have you stay on it for a certain amount of time.

susyque8

Hello group. I am in decision mode this week and would appreciate input, if willing. I began AIs in June after a lumpectomy (technically 2 lumpectomies - 1st did not have clean margins) and 16 radiation treatments. My tumor was only 1.7 cm, stage 1B, grade2, with NO node involvement. I started on Anastrazole then switched to Letrozole in October. My worse side effect with both has been severe joint pain in hands and feet. And also neuropathy in both. I am on a med break right now (18 days to date but supposed to be just 14 days) and as of just yesterday I am walking relatively pain free and the hands are also responding well. The neuropathy decreased dramatically after one week. I feel so much like my old self again.

My questions: For those who do not take AIs, have doctors altered your monitoring plan any to watch for faster potential recurrence? For distant metastases? Has anyone received comparison on % of recurrence with and without?

Thanks

2FUN

good question suzy. I was just talking to my DH about this last night. Everyone's chances of recurrence vary so much, depending on a lot of factors, many of which we don't know about yet.

I hope many people chime in with info!

Julia0804

I have been on Letrozole for 30 days now and I can effin stand this crap! Every joint hurts, I am exhausted all the time and I cry constantly. If this is going to be my life I rather be dead.

Mquara

Julia0804 call your MO tomorrow to discuss!! Do you take any supplements to try and offset the SE’s?

Julia0804

I did send a message to MO. What kind of supplements? I am taking Zoloft to make me happy about taking this crap.

Mquara

Julia0804 speak with your MO about what they recommend first. I take Claritin, I figured it worked with the Neulasta so why not and my MO agreed with it. I also see a Nautropath that works with my MO. She has me on quite a few things to help offset aches, pains and other stuff. I have Lupron on top of Femara and also neuropathy from Chemo so I’m a mess but I really do think the supplements help. I posted earlier in the thread about what I was on. I will find that post and link or copy it in a few minutes.

Julia0804

HapB, what did you do?

Mquara

I’m on my iPad and can’t figure out how to link the post but here’s a screenshot lol. It’s only one page back.

Julia0804

I already take most of these because I have Graves' disease (they are monitored closely). I guess I am lucky because I don't have hot flashes. I could probably deal with the pain but I can not tolerate being tired all the time. I got prescription diet pills and I still am exhausted.

Mquara

Julia0804 exhaustion is a big issue for me too. I have a checkup coming up in three weeks and that’s on my list of things to discuss. Yesterday I slept in, got up around 10am and was in bed by 7:30 that night. I was asleep more than I was awake