FEMARA
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Make sure it has black pepper in it.
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I take the Gaia turmeric with the black pepper. My hot flashes aren't that bad and that's even despite surgically induced menopause. Maybe it does help. But I also take Peridin-C which my holistic doctor recommended so not sure which one it is. I do know my joint pain is almost non existent since taking the turmeric.
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All cells (not just cancer cells) need glucose—which the digestive & endocrine system can create from not just sugar & other carbs but from protein & fat as well. The advantage of a low-carb (not carb-free) diet is that you are less likely to have the glucose converted to fat to be stored in the fat cells and more likely to have it stored in your muscles & liver. Glycogen is more easily accessed as fuel to burn than is body fat. The less fat you have, the less androgen you will make for aromatase to convert to estrogen, and the more effectively any AI you take will work to short-circuit that conversion process by aromatase.
The less sugar and refined starch you eat, the lower your LDL cholesterol & triglycerides will be, and dyslipidemia (high bad cholesterol) is a risk factor for ER+ bc (either developing it, recurrence, or the mitotic rate of existing tumor cells). And low-carb diets also tend to be more effective for weight loss and maintenance of that loss. The type of low-carb diet to which I refer omits added sugars (i.e., sugars added to foods rather than naturally present in fruits) and refined starches and potatoes, strictly limits complex grains, allows unlimited green veggies, and limited amounts of fruits (preferably low-sugar ones like berries, stone fruit and non-tropical melons) and full-fat dairy, and reasonable portions of protein (animal & legume) and fats (other than trans-fats, which are prohibited). In other words, mainly “dead animals & leaves.”
(Do as I say, not as I do. Back on the horse and back to the gym mañana, after Passover is over).
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Sandy - Yup. Love that dead animals and leaves diet. Easier said than done.
>Z<
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Update from me -- had my oncology appointment today and she prescribed Effexor for my hot flashes. Hoping that does the trick -- she said it works about 70% of the time -- might not totally get rid of them but makes them less frequent and intense.
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Does Femara cause severe brain fog... I have been on it for 4days. I have been having a terrible time coming up with names of people/things. I had trouble remembering what exit to take to the rad oncologist... etc I know I can be spacey but this is extreme!
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Letrozole (generic Femara) made my brain fuzzy. Had a harder time to function over all. Much MUCH better back on Tamox as it gave me worse joint pain and just a general miserable sickly feeling for the 5 weeks I was on it.
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hi sixcats maybe try taking drug at a different time. For me i have take it about 930 in evening and have no brain fog.
side effect can slow alertness reaction time so if affected
driving perhaps should be avoided till SE lessen
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I am new on this site so forgive me if this is a repeat, I started Letrozole in July. By the end of October I developed trigger thumb. I've had this before, so I didn't associate it with the letrozole. Since October it has progressively gotten worse. I now have pain in both thumbs, and trigger finger in both ring fingers. My joints are so painful I can't even make a fist. It is worse in the mornings. I mentioned this to my MO and she said there was no way this was from the letrozole and told me to go see an orthopedic doctor. Obviously, I need to switch MO's because mine does not care about or listen to me. I'm curious what others who have had hand pain have done to alleviate the pain. I am currently going to PT but it doesn't seem to be helping. My integrated specialist put me on Rhus toxicodendron (poison ivy pills), but I've only been on them for a week, so no results yet. It is supposed to alleviate joint pain. I am also on Fish Oil and vitamin D.
Ann
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Hi Annie,
I have been on Letrozole for a few weeks and I too have pain in my hands especially in the morning. At the advice of many of the folks on this board I take Loratadine and it really helps. It doesn't completely take away the pain but it helps and in the morning I recover quicker...
I hope you are feeling better soon.
Ronnie
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Annie, this is rather general, but could offer a suggestion or two: Bone and joint pain
Antidepressant Duloxetine Eases Joint Pain Caused by Aromatase Inhibitors
Side Effects That Interfere With Your Treatment Plan
We're thinking of you, and glad you found our community.
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Back when i went to my MO with my first trigger thumb she offered to take me off letrozole. Went to a gathering of about 30 BC survivors 1/2 of us had trigger thumb and or fingers. I had it in 3 at once. The AI dries out the fascia. The clotheslines get stuck in the pulleys. I opted to stay on tge stuff. Mets would hurt worse
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Your MO is wrong, Annie. (Many, unless they've been through it themselves, refuse to admit that various symptoms are SEs of the drugs they prescribe, even in the face of package inserts that list them)! Trigger finger and joint pain—not just in weightbearing joints—are SEs of AIs. Next to hot flashes, joint pain is the second most common SE—at least half the women on AIs have it.
The problem is that it is hard to distinguish symptoms of aging from SEs of AIs. As we age, we make less estrogen, especially after our ovaries stop working. This happens gradually, so our bodies adapt more gradually. But AIs relatively abruptly & drastically reduce the amount of estrogen still circulating in the bloodstream. So their SEs are essentially like menopause all over again, but on an accelerated schedule. Joint pain is usually the first sign of age-related osteoarthritis, so it’s logical that AIs would either cause it or accelerate or aggravate a pre-existing case of it.
Trigger digits are caused by nodules on the tendons getting caught on the tendon sheath pulleys, and are often caused by aging. I had my first trigger thumb in 2005, when I entered menopause; a cortisone shot cured it within days, but it flared in 2010 and so I had the tendon release surgery. 5 months after starting letrozole, I developed intermittent trigger thumb on my other hand. Eventually it hurt, so I went to a hand surgeon. (A different one, this time in the same system as my cancer team). He administered a cortisone shot but it didn't work by 6 weeks out, so we scheduled release surgery. The night before the surgery (8 weeks post-shot), my thumb not only stopped hurting but started moving smoothly again. We canceled the surgery…in the pre-op room! Since then, once or twice on arising, I got triggering in my middle finger, but it wasn't painful. And it stopped when I stood up and got blood flowing to my hands again.
My hands and other joints are stiff in the morning but within a few steps (or fist-clenches) it resolves. Same thing if I've been sitting too long. It's bearable, because I take my letrozole at bedtime, along with a couple of arthritis-formula acetaminophen, and 200 mg. of celecoxib (Celebrex) on arising. (Aleve is cheaper, but rough on my GERD). So any brain fog happens while I'm asleep. (Who needs to dream clearly)? Occasionally I get insomnia, but an extra 3mg melatonin and a half-tab of .5mg Xanax works for that. I don't get real hot flashes, but occasionally I warm up & sweat. So I use my ceiling fan. With joint pain, as much as it hurts initially, getting moving is the best way to ease it. With joint range of motion, it’s “use it or lose it."
If you still have problem SEs, try different generic versions of letrozole (even Femara, if your insurance covers it or you can afford it). If that doesn't help, ask your MO if you can try anastrazole or exemestane. I'm with Chloesmom on this. Heck, not only would mets hurt worse but some of the drugs I'd need would break the bank even with Medicare Part D.
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You are so right, Sandy. These doctors don't want to admit there are any serious side effects to the drugs they prescribe.
I talked with my MO about having trouble remembering and focusing - just being fuzzy. He doesn't think it's the letrozole. He put it down to the stress I have been under since my mother died, but he did suggest I take it at another time ( I take it in the morning). I think I'll try your time.
I have also been arguing with him about my nails. They are so fragile, they tear at the slightest touch. He told me to try Biotin.
He did take my hand pain seriously and admitted it was probably the letrozole. I have had stiffness in my fingers for several years, but it always went away when I started to use my hands. But it suddenly flared in January. I couldn't make a fist or even use my hands very well. My PCP put me on extended release acetaminophen and it helped a little. The MO told me to stay with the acetaminophen and he added more D3 and glucosamine chondroitin. There is still some discomfort, but it is manageable for me. Exercising helps a lot. I walk at least 1.5 miles every morning and usually log at least 2.8-3.5 miles by the end of the day just around the house and yard.
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Chloesmom, I'm so pleased with your success at the hairdressers. I imagine that this gives you a boost.
To all with increasing hair loss on Letrozole/Femara, I have lost considerable hair too and it's not coming back. I've been on Letrozole for two years. Anyway today I was fitted for a wig at Johns Hopkins Image Center. I had been looking at Rachel Welch synthetic wigs from the TLC Catalogue at the Breast Cancer Center. Those that I liked were in the $200 range. However, at the Image Center the wig was $600! It is a Rachel Welch brand and I wonder if there are different grades. Is this reasonable? Does anyone know?
So far I count myself incredibly fortunate in terms of side effects. Some muscle and bone discomfort but not often.
I do so enjoy reading all the comments but don't participate very often.
That's all for now.
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I’ve been taking Biotin for several years now, and it’s keeping my hair-thinning to post-menopausal pre-letrozole levels. But my nails have always been thin & weak, and continue to be.
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Hi all. It infuriates me when MOs don't validate the SEs of these powerful drugs. Maybe if they were willing to admit it they could then have an honest conversation about how to handle the SEs or even switch to another anti hormone. This might actually increase compliance! Good luck to all navigating this complicated disease...
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Ronnie, Thank you for the advice to take Loratadine. Who knew!! I've got some here at home and will start taking it this morning.
Ann
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Thank you for the links! They are very helpful!
Ann
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ChiSandy: Thanks for all the info. It was very disheartening to have your MO dismiss your concerns without even listening. I have found that the more I use my hands, the better they feel. I am an avid knitter, so my joints certainly get a lot of exercise!! I took some advise and started Alieve yesterday. It helped a lot, but it did take hours to kick in. I just took a Claritin, so hopefully, that will help too.
I'm very happy I found this community. Everyone has been so helpful.
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~Sandy~
My nails were always strong and grew quickly. I am hoping the Biotin will give that back. We'll see.
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My oncologist takes side effects seriously, and is concerned that people stay on the meds. She is allowing me to take 1/2 pill to ease pain but I haven't done it yet.
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Dont know about wigs but i saw my foobs in a catalogfor 40% of the price a fitter charged
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So Ladies, does Femara radically impact your pleasure during sex? I have been on it for one week... Last night the pain was extreme, even with lubrication. This morning, I still am tinged pink when I pee. What lubes work? What can I do (short of never having sex again in the next five years!)
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Lynn, Yes, I had this problem too. I am seeing an Integrated Specialist for supplements and she put me on Mucolox/vanicream light base vaginal cream. It really didn't work for me, but she has had patients that it did work for, so it's worth a try. I have decided to do the Mona Lisa Touch (you can look it up on the internet to research it) which is a C02 laser treatment. It's a series of 3 treatments 8 weeks apart. I have only had 1 treatment so far. It's supposed to be 80-85%% effective. Unfortunately, insurance doesn't cover it, but I found a doctor who gives 50% off to cancer patients, so my cost was about $1,000.
Ann
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6cats - your vaginal and urinary tract linings become thin and less pliable on this treatment. UTI's are common for this reason. I haven't had it so bad I had to do something about it, but you will get other suggestions I am sure.
>Z<
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tried them all! This is the only one that helped.
Slippery Stuff Gel Personal Lubricant, got on Amazon, but you can google stores
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6cats, I've had success with hyaluronic acid. It's not a lubricant but has helped me with vaginal dryness.
Here's the product I use: http://www.hyalogyn.com/ , which I find an irritating waste of plastic with its 10-mono-use applicators - the only thing I've been disappointed with, so hopefully someone else will point us to a similar product.
It's also not cheap, but I've found it's worth it.In case you're interested in research, here's one study: Comparison of the Hyaluronic Acid Vaginal Cream and Conjugated Estrogen Used in Treatment of Vaginal Atrophy of Menopause Women: A Randomized Controlled Clinical Trial
and my MO gave me the go-ahead on this. I hope that helps, and hugs,
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Oh man, such great info here. I wasn't getting notifications that posts were made and wow, I was behind! Whoops! OK, now I'm on track. Anyway...
On Femara (one month); I have been experiencing joint pain (I have taken joint meds for years and now they hurt), fogginess, irritability, and not my usual energy. I like the tip of taking Femara at night, I'll try that. I also have been taking one every other day.
Going to try the Turmeric/Curcumin/BlackPep that someone recommended. I'm going with the one on Amazon that's a best seller. I've been taking a concoction of Tumeric Power/Honey/ACV/Black Pepper & Lemon, but the taste is disgusting me.
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Ten years of Femara is in my treatment plan but I'm pretty scared of all the side effects I'm reading about. I have a question for those of you already on it. If you run or walk a lot, do some kind of weightbearing exercise, have you had bone weakening, osteoporosis?
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