FEMARA
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Well, popped the first pill yesterday. Last night I felt fuzzy and weird---but I popped the pill in the am. We'll see I guess. Tamox was good to me. MO is insisting I'm high risk and the 3-4% is big for me.
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Arista- I am about to start the Letrozole also.My onc said the same thing. We have a similar profile.
All the best to you.
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Oh wow gardengypsy, we have close profiles. Good luck to you too and let me know how it's going.
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Artista, I have bad OA in both knees also also and found letrozole to be tolerable: no worse than Arimidex which I was on previously, plus I was feeling depressed and tired on Arimidex. (never had Tamox, as was post- menopausal before dx). What I have isn't so much increased knee pain as much as stiffness. It is worse after I sit a long time or first thing in am. Paradoxically, walking helps a lot (also helps with weight issues). Consider keeping a cane by your bed to help when you first get up, but you may not find the SEs to be that bad...if they are, you can switch to another AI. And as Sandy notes, use a rail on those stairs, ESPECIALLY going down (I broke a foot several years ago being careless and then falling going downstairs). It is ok to go up and down slowly.
I am probably heading to a knee replacement in the next two years. Would have happened without the letrozole but it probably will hasten it.
Octogirl
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Thanks Octogirl. I already go up and down one step at a time with rails. As for knee replacement, may I recommend http://www.dearbornsah.com. I worked for these docs for 10 years as their surgery coordinator. Top notch where you have your own room in the center for joint replacement building with personnel who only deal with hips and knee replacements they do. It's as close to a 5 star hotel you can get in a hospital setting. Between the 2, Dr. Sah is more bed side manner and Dr. Dearborn more instructional. Different personalities but excellent. It's so busy there. When I was doing it I was slammed doing both their schedules. Now they each have their own scheduler.
If you decide to come down this way, give me a ring so we can meet up!
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I am new to this, so please forgive any faux pas on my part. I have been on letrozole since late July 2016. No side effects at first, but since October I have had pain in my right arm. My MO says it's bicep tinitis from repetitive movements. Funny because it never bothered me before and I was doing the same 'repetitive movements' for more than 13 years while I worked. I have also developed muscle pain in my thighs [ I have been walking for the last five months (nothing strenuous) and should be past the exercise aches], and arthritic-type pain in the joints of my hands, especially my fingers. Walking doesn't cause me any pain, but lowering myself into a seated position or trying to stand after being seated is painful.
I gained a lot of weight during radiation and lost half of it between ending radiation and starting the letrozole. I can't seem to lose any more weight and am actually gaining a bit.
I am wondering if the pain, weight gain, and inability to lose weight are related to the letrozole. I know muscle & joint pain are side effects, but should it be so painful that I can't function at times?
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I have been on letrazole since October. Most significant side effect has been the joint pain especially after sitting. Last Monday ALL my joints ached and was told it could possibly be due to barometric pressure. Has been better since unless I sit for too long. Started a fitness program including aquatic exercises and that seems to help.
Taking calcium, vitamin D3, B complex and fish oil recommended by a dietitian. Anything else I should ask about?
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Lipososomally encapsulated curcumin is Da Bomb as far as joint pain is concerned.
>Z<
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Would that be comparable to turmeric with pepper? My fitness instructor recommended that.
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Turmeric with pepper is not the same, but that is another way to increase absorption. I have most confidence in the absorption of the longvida curcumin. I take 2000mg per day. But some people just mix it up with oil, other mix it with some pepper. Those should work as well.
>Z<
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Have some head fuzzies, sleepy (even though napped), lower energy (than on Tamox), can feel joints in hands though not pain yet.. and this is after the 3rd pill. Tamox I just had occasional cramps like pms.
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Well, estrogen deprivation can cause all the symptoms of aging—since our bodies make less estrogen after our ovaries give up the ghost. Unfortunately for those of us with ER+ tumors, that’s still too much estrogen so we need to inhibit the aromatase our livers produce that convert the androgens made by our fat cells & adrenal glands into estrogen. (Losing weight in the form of fat—especially belly fat—helps reduce estrogen, but we can’t live without adrenal glands). So taking AIs can bring on menopausal symptoms we might or might not have had when time took us through menopause. (I had a ridiculously easy menopause, so I feel any SEs I get from letrozole are a form of karma).
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Has anyone had success with any of the diet programs that ship food to you like Nutrisystem? I know it's a lifestyle thing but I need a big jump start. Food has to not be icky. Dad will pay for it so I'd love to take him up on it. I posted in the recipes forum and got nada.
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Novmoon---turmeric is absolutely awesome for joint pain. I take Gaia turmeric which is made in NC and has the black pepper already in it. You HAVE to take the turmeric with black pepper to get the benefit. I'd also suggest magnesium glycinate ( I take KAL). That seems to help alot of folks with joint pain as well.
velvetpoppy--muscle and joint pain are par for the course as far as any hormonal therapy goes whether Tamoxifen or an AI. For some, AIs make it worse which is one of the reasons I'm sticking with Tamoxifen for now with my docs blessings. Supplements and exercise (walking and swimming work well) are the most helpful for getting through it.
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I just joined a weight loss group at the Cancer Wellness Center in the Northern suburbs of Chicago last month. The class is meeting for 20 weeks. I still have about 25 pounds I would like to lose, but there are people in the group that have over 100 pounds to lose. There are several people in the group that previously attended weight watchers, and sang the praises of it. One person lost 40 pounds on weight watchers. I don't know anyone who has tried Nutrisweet, but I do know someone that tried Seattle Sutton which is a food delivery service. They have various diet plans you can choose from such as weight loss, and they also have a plan for diabetics. It is not cheap, and I believe it is around $100 a week for the food, which they deliver I think twice a week. But if you strictly do that, you do not have the kind of support you would get at weight watchers. I personally love to cook, but if you do not, you can buy healthy frozen dinners that have the ww points on the box, and personally I think Lean Cuisine and Healthy Choice are okay. I buy them occasionally. It would also help if you did some sort of exercise. I do a fair amount of walking, and I use a walking exercise tape. You might also look into Curves, which is a fitness studio for people that are overweight. I started taking letrozole two months ago, and that was one of the reasons I signed up for the weight loss class. I was afraid that I was going to gain weight on the drug, and so far I have lost 4 pounds.
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I am taking calcium, D3 and fish oil. The first two are from my MO, the fish oil is from my primary. I also walk. I either walk 15-20 minutes in my neighborhood every day, or I do laps at a local pavilion. I usually do 15 laps around this arena. Either way, I get in 3/4 - 1 mile everyday. I try to walk six days a week.
I wish I could afford the weight loss groups, special diet foods and the fitness centers , but I can't. I have to do this on my own.
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Picked up the turmeric with pepper today at Costco. Will see how it works. Seems joints getting little worse each day. Thanks for the suggestions.
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Velvet...you don't need any of that expensive stuff. You are doing just fine. Walking is excellent weight-bearing exercise that is good for bone health.
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I tried Seattle Sutton—and it reminded me of the old joke:
Two elderly women are sitting around at a Catskills resort, playing mah jongg. One complains to the other, “The food here is terrible.” Says the other, “yeah, and such small portions.”
I did lose 60 lbs. once on Jenny Craig, but in retrospect I was an obsessive PITA—bringing frozen meals to restaurants and paying to have them nuked while everyone else at the table ate real food. Any vacation had to include cooking facilities so I could nuke the nonperishables and a Jenny Craig center so I could buy the perishables. And once I hit maintenance, keeping that stupid food diary got really old. Nowhere under “emotion” was there a choice for “it was normal mealtime and I was hungry.” (The latter ticked me off about the various incarnations of WW as well—I’d done every version since the original; and the last time I lost weight on it I got gallstones).
Seattle Sutton’s women’s program is roughly 1200 cal/day when you add in the prescribed two glasses of skim milk. The food is especially bland—the only seasoning they use is black pepper. The breakfast smoothie looks, smells & tastes like Pepto-Bismol. Each week’s meal allotment includes an unripe piece of fruit they suggest you nuke to make it palatable. It might be okay if you live alone, hate to cook, don’t care about taste or texture and never leave your house at mealtime or overnight. But their stuff took up half my freezer—and that’s not a good thing if you have two other adults living with you. And every time I had to go out and perform out in the ‘burbs or exurbs, a meal either got tossed, piled up in the freezer, or someone in my household had to smother it with sauce or butter in order to chalk it down) since I was starving and had to eat at whatever restaurant nearby was open at the time.
Haven’t tried Nutri-System, but I hear it’s less palatable than Jenny Craig.
Look, I’d do that Cancer Wellness Center program, but I can’t commit to being available to attend every single meeting, which they made clear to me was required.
Meanwhile, my BCBS “Well On Target” unlimited in-network-gym-visits program has ended; instead they’re offering a discount on L.A. Fitness memberships. Sadly, you can only attend the branch at which you sign up—the one around the corner has no pool, and the closest one with a pool is four miles away. We’ll probably join our neighborhood one anyway, as drying my hair after a swim is a labor-intensive process. BTW, Rosehill Cemetery (w/in walking distance from me itself) gives historical walking tours (lots of dead 19th century local celebs) every Sat. morning at 10 am. Might try one when it gets warmer.
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If you have AARP, check out this website for FREE club memberships at select facilities like 24 hour fitness! https://www.silversneakers.com
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Sandy- When I told them that I would have to miss one session while jazzfest was on, the person said that she understood. I just decided to go to jazz fest the second weekend, and we are not having class that Tuesday, and so it will work out okay. The last time, we met at Northbrook Court to go walking, one of the leaders of the class said that every time we have a class that has an exercise component, we have lower attendance. We only had 8 people that showed up. We started with 18 people the first week, but several of them dropped out, and we maybe have a total of 12 people that are still in the class You might be able to sign up for the weight loss class that is going to take place in Evanston at Kellogg in a few months. It would be closer for you too. The only thing about the weight loss class at Cancer Wellness class, is that they don't give you a specific diet to follow, and so for people that need more direction it might not work out. They encourage you to sign up for myfitnesspal, and enter in what you eat every day, and how much exercise you do. If somebody is looking for more direction, they should go to weight watchers.
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Z - I just read about the lipososomally encapsulated curcumin but have no clue what it is.
Tell me more if you can.
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Prohealth longvida curcumin is what I use. 2000 mg/day. There are other brands that distribute longvida. You can shop around.
This is an article that compares the various ways of delivering curcumin so it is absorbed.
Pepper works as well, but I dont think quite as well. That just means you have to take more.
>Z<
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Artista, Silver sneakers isn't a perk of AARP membership: Silver Sneakers, at least in IL is only offered to those in Medicare Advantage plans (AARP's included). Since those are managed-care plans (the definition being “we don't care, but you'll manage") with closed networks and few participating pharmacies, that was a deal-breaker for me. My husband & I have BCBS Medicare supplement F and separate Part D for drugs—neither of us have paid a cent for medical or surgical treatment since we signed up, except for the final refractions by our ophthalmologist a month after our respective cataract surgeries (and my husband's office reimburses us for those). Our insurance agent sent me a letter today gushing about how much cheaper Mutual of Omaha's Plan F would be, and that it includes vision care, but my husband (a cardiologist) says that all his hospitals' social workers agree BCBS is the best out there at approving things that other companies say are “covered" but drag their feet on or deem unnecessary. Besides, MOO doesn't offer even the gym discount plan our BCBS Plan F does (never mind Silver Sneakers); and its “vision coverage" is a joke—$50 for optometrist eye exams, and paltry discounts on frames (and only those cheaper than $145) and lenses, and limited only to the bigger eyewear vendors (Lenscrafters, Pearle, Sears Optical, etc.) that are part of the Luxottica monopoly. I get my glasses at Warby Parker ($95 including single-vision lenses, $200 upcharge for progressives, $100 for photogray) for half of the “discounted" LensCrafters price for glasses with the same lenses and less-fashionable frames; and recently found Zenni Optical online which has frames as cheap as $6.95 with single-vision lenses—even with my progressives and slightly pricier frames, 1/4-1/3 the price of Warby Parker. (Peaches, remember the woman in our support group who can squeeze a dollar bill till George Washington breaks down & confesses to chopping down an entire cherry orchard? She has a whole wardrobe of Zenni glasses).
BTW, MOO will not accept you for a Plan F (or any other Medigap plan) if you’ve had, been treated for, or advised to be treated for “internal cancer” (as opposed to basal or squamous cell skin cancers) in the past two years. So I couldn’t even switch until two years after stopping AIs assuming I’m NED.
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Thank you Sandy. Shopping for insurance is one of the most challenging decisions because the devil is very much in the details. I have Aetna and I have been astonished at how easy they have been to deal with given what I hear from others, and the cost of my medical care. There are big differences between the companies.
>Z<
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Hi all:
I'm newly diagnosed (well diagnosed one or two days before Xmas 2016). Of course, there's more to the story but since this is the Femara thread...I am just finishing up my second month of Ibrance/Letrozole and I just want to say:
I am fat. Fat. FAT!!!!
Does this happen to anyone else?
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I've been on Femara (was not available in generic form letrozole when I started it) and then letrozole for 7 yrs and have not gained weight. Am 70 y/o, 5'6" and stay between 120 - 125 lbs and am a very active 'outdoor woman'.
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Kicks, Wow 7 years!!! I think that is the longest I've ever seen. I am so happy for you. Do you think the brand name Femara works better than the generic Letrozole?
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Kicks, I have been on letrozole 1 year, 4 to go. I am 66. Currently hiking every week has kept my weight stable. As soon as I retire I am going to increase my hiking. I truly believe physical activity is the key to conquering the weight challenge. Hugs to everyone
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This is so good to know. I just finished my second month and I've put on 10 pounds. UGH! Of course a lot of my problem is that: 1. I live in northern Minnesota where low key outdoor activities are difficult to say the least
and more importantly: 2. What got my mets dx was severe pain in my leg running from my ass to the heel of my foot. I thought it was related to Psoriatic Arthritis....thank heaven it is not due to my bone mets...it turns out I have a herniated disc at L5. After two epidural injections of cortisone, I am better, but still in pain. Seriously putting my socks and shoes on is a struggle. Sorry to complain. Somehow I need to get myself active again...the chronic pain and weight gain is seriously bringing me down.0
