FEMARA
Comments
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Oncotype says it is a 50% risk so that if your risk is 12% without hormonal therapy, it is 6% with. Of course that is with tamoxifen and AI's are supposed to be better. I would like to know where your doc got the 3% figure.
My doc is at a major cancer center and was okay with me doing half, and said she allowed that to deal with side effects. This as in response to my question about dosing. I have to ask her if she is okaying that to avoid me getting off entirely or if she has read the study that says it is just as effective.
Again, there may be effects of AI's beyond elimination of estrogen from adrenals and fat, that would be affected with a reduction. So I am going to check further before doing anything.
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I'm confused. So what is the % of cancer coming back if you are on femera vs not? Does anyone know % . If it's something small like 5 or 10 percent of cancer reoccurring I don't want to struggle. Is there a site we can go on? Has any Dr. Said anything to anyone? Thks ladies.
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The 3-4% figure she gave me was the difference between taking AIs v staying on Tamox supposed effectiveness.
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Aga - Check out Table 8 in section 14.2 of the Femara package insert. This is the data to support using letrozol for early stage breast cancer. 7.5% of women who took the placebo had a recurrence vs 4.7% who took femara. So less than 3% difference. In my opinion, if the side effects are severe, the negative effect on your overall wellbeing more than offsets the 3% benefit. It's beyond my comprehension why doctors try to keep early stage MBC patients on this drug when they are experiencing serious side effects.
>Z<
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Ok Ladies , Im confused. What are AL's...........I will be starting Femara { letrozoleo ) on Monday. Is this different then AL or the same thing just a different form. So confused lots to learn in a few short months and trying to wrap my head around everything .
Any help understanding would be much appreciated
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Its not an AL, its an A/I or aromatase inhibitor. This is one of several types of drugs that suppress hormone production. Aromatase faciliates the conversion of androgen (?) into estrogen in fat and other tissues (outside the ovaries). Letrozol inhibits the aromatase enzyme, stopping the production of estrogen in this way. Works as long as estrogen production by the ovaries has stopped for one reason or another, (like menopause).
>Z<
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You mean AI's? Aromatase Inhibitors. These are Femara, Arimidex and Aromasin (and of course their generics). They are recommended for women post menopausal v Tamoxifen as they shut down estrogen production whereas Tamoxifen blocks the receptor sites. There's a great explanation I think it's ChiSandy that gave using a donut shop visual a few pages back if even that far.
What we are trying to say here is the benefits (if any as we don't know if it even works on us individually) may not be worth the horrid side effects some of us experience for this 3% difference between Tamoxifen and whatever AI you are on. I tried Letro and a couple days in I was miserable, but stuck with it until 5 weeks when I saw my MO for the how's it going visit. Terrible se's for me, debilitating. Hair loss is huge for me as is joint issues as I have joint arthritis pre-cancer and the head stuff---- so I'm back on Tamoxifen and tolerating it well except maybe not so much my uterine fibroids. But at least with that the answer would be to just take it out which is fine by me. Tired of the cramps that come and goes whether from Tamox or not.
So of course try it, switch if you like to see if another is better, different manufacturers may be better, but don't fret if you are like some of us that quality of life is bad on these. Tamoxifen is always there that is more tolerable than AIs in general.
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Zarovka,
Thanks for the info that's very interesting. So are you taking Femera? If so what dose?
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So I'd like to try to clarify some of these numbers.....it was stated that on placebo 7.5% had recurrence and on Femara it was 4.7%. I understand that is about a difference of 3% but isn't it actually a difference of about 40%? I mean if 4 women recurred on Femara and 7 on placebo, wouldn't that mean almost twice as many? The reason I ask this is when I was diagnosed my BS wrote out some numbers for me. One of those said endometrial cancer was about 50% greater with Tamoxifen which freaked me out. He then explained that only 1% of women overall get it and Tamoxifen increases that risk to 2%. So basically the risk was very very low but still double the average woman. He then went on to say that with diligent screening/TVUS we could watch for any problems and catch them early. When I did eventually have those problems, I had a hysterectomy. So am I thinking of these numbers the wrong way? I did ask him if I should swap to an AI after my hysterectomy and he said that the percentage improvement over Tamoxifen was only a couple of percentage points for someone with my stats and since I do well on Tamoxifen, he wouldn't rock the boat. I need to pick his brain at my next appointment!
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Claire - You are correct that they present the efficacy of these drugs in a way that emphasizes (overstates?) their efficacy, IMO, for marketing purposes. The number that matters to me is the absolute difference over the alternative which in this case is 3%. But no one is going to line up to get a drug with these side effects for a 3% improvement in their outcome, right?
This is a good article on these statistics and how they are presented from Dr. Lawanda, voice of sanity.
I do think this drug is being over-sold for early stage cancer. For me, at stage IV, it is likely saving my life, so I soldier through it.
>Z<
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I grew a nice beard and my eyebrows got thicker like a middle eastern guy. GL BB. I was thinking generic Aromosin for a try but I got shell shocked out of the monthly cost. Don't understand how the other 2 can be found cheap and this one not.
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Good luck Bosom! I really hope Aromasin is easier on you. I've been on it a few weeks now. The dramatic hair shed I was experiencing after approx 1 year on Femara has stopped. I'm eager to see if I will get some regrowth while on Aromasin. I am having the same side effects I had on Femara, however--hot flashes, aches, forgetfulness. Nothing too severe so farthankfully.
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how weird is it that on Femera, we lose hair on ourhead but gain hair on our chin...ugh....! My mom never told me anything about chinny hairs!!!!!!
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Oh great something else to look forward to.. what next am I going to start looking like my husband (bald, goatee)
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zarovka....very interesting study. It finally explains the difference between absolute and relative risk. We all need to make informed decisions about treatment options and this certainly helps! Thanks for posting....
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I saw my MO this morning. He thinks the pain I am still having in my breast may be inflammation from the radiation or possibly fluid build-up. He told me he would talk to the RO, BS & PCP to give them a heads-up. I see the PCP & BS in two weeks. Don't see RO until late June, unless otherwise advised.
He looked at my nails and could see the brittleness and tearing, but won't acknowledge it could be the letrozole. He told me to take Biotin and we'll see how they look in three months.
We talked about the joint pain in my hands & fingers and he did admit it was likely the AI. He wants me to stay on the acetaminophen extended release tablets that my PCP prescribed, but to also up my D3 by 1000 I.U. and to take Glucosamine Chondroitin. I told him I hope it works because it may be manageable now, but I don't know if I can do four more years of this. He assured me it would not come to that.
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I don't know how an MO can assure us of anything. Hopefully it won't get worse but no one can read into the future. SEs can crop up or get worse at any time while taking the med.
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Perhaps I should not have used the word 'assured'. What I took away from that visit was assurance for me. I think he was telling me that he will take my complaints of pain and discomfort and do whatever he can to help me to feel better.
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Well, I thought the sheer exhaustion I feel is from Ibrance. But after reading a dozen pages I realize the Femara kicks butt too.
QUESTION: Anyone please if you know - does Ibrance work slowly and reduce the cancer size. But THEN just maintain the size even though it is not gone yet?
Today I started radz on a lymph node mass that is crushing my right airway into the lung. The first two months it had reduced significantly. Then the CT showed no change after two more months. Same with the hilar node and nodes in clavicle area.
Thank you.
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Bluebird - The short answer is yes.
The hormonal protocols, including Ibrance and friends, are slow in getting a result relative to standard chemo. You see a slow drop in tumor size over a couple scans, sometimes several scans. There are people who see results on this protocol after 12 months.
In my case i got pretty much all the reduction in the first 6 months and I have been stable since. Once you get the reduction in size, it can keep you stable for a very long time. Often the tumors that show up in scans after these treatments are necrotic (dead) tissue that the body can't get rid of.
Good luck with the rads. Let us know how you do on Ibrance and how you respond to the rads.
>Z<
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Good news at my hairdresser. Last Nov I was getting bad receding of my hairline at the temples and thinning on top. Every haircut it was worse. I sprung for the $3,000 laser cap from Capillus. They do a 75% refund if I think doesn't work which is a 10% chance. It worked!!!! . Hairdresser showed me before and afterward photos she took of my scalp. We are so excite don't as I was her first client for this! She took training last year on hair loss and became a fitter for the
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Thanks Chloe! Hair is so important. I am thrilled your hair is back.
Now you need to start a business renting that thing out to cancer patients. It's awfully expensive, but if it can be shared among 5 or 10 people it starts becoming a reasonable option.
>Z<
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Actually you continue to use it indefinately every other day for 1/2 hour. It helps scalp circulation. Dont know if it would receed again if i stopped using it
They have cheaper models with less lasers per sq inch, but if i was going to do it i wanted the best shot
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Hi -- I was given Letrozole yesterday and am still staring at the bottle. I promosed myself I will start on Monday! I am going to buy Vitamin D drops tht some woman mentioned at a meeting yesterday. I take a multi, 2000 vit C, 500 mg Calcium with Vit D3 and Mag, 750 mgTurmeric.
You mentioned diet --I heard that low carbs (and no sugar since cancer cells love carbs and sugar), fruits veggies and low protein is a plan. What do you follow? Are you working with anyone? I'll take any suggestions -- eat well as it is--swimmer for deaceds, haven't had a drink for 30 years...don't smoke, no cancers in my family and....I get breast cancer. Go figure LOL Don't we all wish we know how the hell this happened? But here it is, and somehow it's hitting me now. Going through radiation treatment in a few weeks--just got bumped up to Stsge III --lumpectomies in both-removal of all lymph nodes on left....I don't see where everyone puts in their ino at the bottom -- oh well
BC
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bc library - go to your profile (top menu) and enter your diagnostic history.
you also have to go to settings (on the left menu) and make it public.
the signature line with diagnosis and treatment information is what makes this site more useful than others. discussing cancer without context is not very useful.
welcome. remember that people who are having problems with letrozol post here. the people who do not have problems are off doing other things. there are many of them. try it and assume everything will be fine. if you have issues, stop back in here and get you through it. it can take months for the symptoms to appear.
at stage III, you really need to be taking this stuff. we'll get you through it.
>Z<
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BC, I've been on letrazole for two months and have no side effects. Not saying that I won't get them in the future, but Zarovka is right. People who don't have side effects are much less likely to post here. I started coming here before it was prescribed because I was looking for information, but wound up getting concerned by all the horror stories. I almost decided not to take it. I'm glad I gave it a chance and glad I kept a positive outlook. I think that helps as much as anything. I am also stage III, so anything I can do to reduce my risk of recurrence is important.
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How do you manage frequent hot flashes, especially at night? They seem to come on every 1.5 hours and it's hard to get a good night's sleep.
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Gail- here's a thread that could be helpful-
https://community.breastcancer.org/forum/6/topics/782172?page=2#idx_310 -
Some people take tumeric-curcumin with black pepper in it capsules, some gabapentin (an rx). I have gabapentin but haven't used it yet. I think the Sports Research tumeric-curcumin w/black pepper capsules I take are helping to where there are days I don't have warm flushes or if I do, it's not bad. It's so individual what works, if anything. The true test will be in the warmer weather.
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Interesting, Artista. My acupuncturist- homeopath gave me the turmeric curcumin combo for joint pain and warned me it could make me warmer. I can't tell the difference yet, as haven't taken much.0
