FEMARA
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ONJ is Osteo Necrosis of the Jaw, or death of the jaw bone. I was not told about it when I was taking Actonel for 5 - 10 years before i was diagnosed with IDC. My oncologist mentioned it, but said such a low percentage of people that took bisphosphonates ever developed ONJ, I really shouldn't worry about it. After being treated by this oncologist for more than 7 years, I switched to MD Anderson. The doctor there was very concerned and told me to never take it again. She also said that after a point it begins to do more harm than good. Please discuss this with your doctors.
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Brutersmom, that's it. I have a tooth that broke off below the gum line. The dentist plans to do a root canal and seal it - no crown.
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I didn't mean to kill this discussion. I'm sorry.
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Beer girl - no need to be sorry. The discussion will continue! I have been reading the posts and funding them so helpful. I have been on Letrozole for approx 3 weeks. Happy to say no problems. On advice from this thread, I asked for and received my meds from Teva manufacturer. Not sure if it is making a difference but so far all is good. Thought I'd pass on some good news! I do have some osteopenia and my doc put me on Vit D and calcium. She said nothing about magnesium. Should I have my mag level checked?
Stay strong warriors!
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When I am eating as I am supposed to (and I have been backsliding of late), my diet is largely “dead animals & leaves" (yup, I recorded a song about it). I don't practice much in the way of portion control when it comes to protein (other than legumes, which I need to limit) or fat--but as to protein I can't get through a large portion (remember the old version of WW when a dinner “portion" was 6 oz.? Yikes!) of meat or fish; and though I don't limit myself consciously I don't go nuts when it comes to fats--I never feel like eating more than a slice or two of bacon a couple of times a week, just tiny cubes of good cheeses and enough butter or oil to keep my eggs, fish or veggies from sticking to the pan. My absent gallbladder acts as my “fat cop" if I overindulge--and it's rather uncomfortable. I do allow myself full-fat organic dairy: small amounts of Greek yogurt (w/o fillers) and lactose-free low-carb (FairLife) milk, cream--just enough of the latter two to froth for a cappuccino. I'll have pasta once a month or less, and the only bread I try to eat is one of a couple of brands of very low-carb high-fiber 100% whole grain (here in Chicago, Today's Temptations or ZBest, or Sami's from Tampa, no more than 2 gm. net per slice. Once a week I'll have a Sami's bagel--4 gm. net--with lox and a schmear (loaded up with tomato, onion and fresh dill). For veggies, anything green except shelled peas; and anything red, orange or yellow except carrots--believe it or not, they're pretty high-glycemic, more so than even sweet potatoes! No “white stuff" (as my MO puts it) other than fish, chicken breast, cauliflower or organic dairy. Ergo, potatoes, rice (except occasionally wild rice), white flour, and white sugar are off the table. Very rarely, I will have a little raw honey, real maple syrup (I have a friend in OH with his own grove) or pomegranate molasses (which I haven't tried yet). I sweeten mostly with xylitol or a little “Skinny Girl Agave" liquid (mostly stevia cut with just enough agave nectar essence to cut stevia's bitterness. For fruits, all berries are okay, as are small amounts of melons other than watermelon. No grapes. Occasionally, stone fruit such as cherries or apricots; and as a treat, pineapple, mango or papaya. No apples or pears, and no bananas (which I can't stand except as bananas Foster). No juices other than lemon or lime. Whole citrus only occasionally in small doses (one tangerine or half an orange per week). I used to eat grapefruit until I went on letrozole--grapefruit blocks its action.
Essentially, the diet is reasonable amts. of fat & protein, plus “eating the rainbow." I wish I could be a vegan, but I've found that impossible to follow without grain products or potatoes. Interestingly, lowering my dietary fat (even saturated) didn't affect my cholesterol, but drastically cutting sugar & starch cut not just my LDL but also triglycerides. (Insulin, bradykinin, and renin--pancreas, kidneys, liver--are all interrelated in not just glucose metabolism but also blood pressure and blood lipids. Interestingly, more and more research is showing that high LDL is implicated in heart attack and stroke only when it forms “friable plaques" that can break off as a result of inflammation and suddenly and completely occlude an artery. As long as the “lumen" (the inside space) of the artery remains open and the plaque buildup is stable, in the absence of arrhythmias such as A-fib or of an increased tendency towards clotting, cardiovascular “events" aren't as likely as once thought. Diet and statins can reduce LDL and increase HDL, but lowering LDL doesn't always affect whether a cardiovascular event will occur. (The smaller the LDL particles, the greater the danger). And high HDL is cardioprotective (especially if it's large-particle). My HDL is 92. My heart is unlikely to stop prematurely absent a violent incident. (As in the classic line from Jimmy Breslin's The Gang that Couldn't Shoot Straight: “The Don died when one night his heart suddenly stopped beating. His heart stopped when six thugs crept through his window and stuck knives into it.”).
Heredity can be a factor, but both diet and avoidance of inflammation (the latter achievable via stress reduction and exercise) can mitigate it. Exercise-averse wags liked to joke that jogging can kill you--they cited running evangelist Jim Fixx’ heart attack death at 55 as an example. What they failed to mention is that his father & brothers died of heart attacks in their late 30s. Exercise gave him an extra 15-20 years.
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Yikes!!!!!no one told me about not eating grapefruit! I've been eating it almost daily and am on letrozole.
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Cholesmom, I think that the jury is still out on grapefruit. I ate some around Christmas when they are really good. I was on Arimidex then. My side effects really increased and when I stopped grapefruit they went away. There are some articles that say you should avoid grapfruit but not a lot of serious documentation. I don't think a lot of time has be spent studying anti hormone drugs and grapefruit.
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I just picked up my prescription for Letrozole yesterday. It's a generic from Sun Pharmaceuticals (90 day supply). I read through some of the posts on this thread about SEs with this manufacturer. Is there anyone taking this generic that have not experienced bad SEs? Should I go back to the pharmacist now and see if I can get another generic, or wait the 90 days to see if I have any problems? Thanks!
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Are there differences in the generic forms of Fermara???
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I think the differences are in the fillers, not the active ingredients. I searched "Sun pharmaceuticals" and read that some women experienced less SEs with other manufacturers like Teva, or if they changed to name brand Femara.
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My prescription is made by accord. I have joint pain shoulder pain trigger finger my hair is either thinning or not growing. It doesn't make me unable to do things nor do I need to take anything for pain I just worry it will continue to get worse.
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I was more worried that the letrozole wouldn't work as well with grapefruit. The SE I can live with. Just don't want to deal with BC again!h
Do you have a reference ChiSandy? My MO hasn't said anything about it and I see her soon
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from https://www.cancercare.on.ca brochure on letrazole:
Avoid grapefruit, starfruit, Seville oranges or their juices/products while on this treatment, since this may increase side effects.
***
Excellent resource for other foods to eat & avoid when using Femara or other AIs:
Breast cancer diet during aromatase inhibitor treatment
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My MO said an occasional grapefruit was ok, but to not make it part of my daily diet
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grapefruit interferes with a lot of meds
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Grapefruit interferes with some meds but potentiates (i.e., dangerously increases the effects of) others. I would check interaction lists for everything you’re taking. Ditto if you are using herbal supplements. My husband contends that echinacea interferes with aromatase inhibitors. Not sure about that (didn’t see anything on Novartis’ Femara page), but I discontinued all my herbals because not only can some have estrogenic effects but that they are unregulated by the FDA and you really have no idea what you’re getting. Besides, the weight loss herbals didn’t work. (And some can increase bleeding if you’re taking low-dose cardio aspirin, and others such as St. John’s Wort can, if taken with antidepressants, increase the latter’s blood levels dangerously or even cause manic episodes or serotonin syndrome which can be fatal). It also interferes with the effectiveness of some antivirals, chemo, and biologics, including for autoimmune diseases and some targeted therapies.
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Exercise really helps with the joint pain with these drugs. The first 20 minutes I hurt more but if I keep going, I feel better. I walk and do Tai Chi. I also think cold temperatures make things worse, so keep warm!
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MO said 2% of women on this stuff get cataracts. Cataract surgery scheduled for 4/6. Oh well!Still beats BC!
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Interesting Chloesmom! ......had my eye exam this month and was advised that I have started growing a cataract. Cr@p!! Also had my MO follow up today and chatted with my MO about 10 years AI. He said he is waiting for the science around extending this therapy, however he has a couple of patients who are doing well on AI and want to extend for their own peace of mind and he has no problem supporting that approach. I was glad to hear that he was willing to support extended therapy, understanding that peace of mind is important too.
MsP
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Steroids are known for causing Cataracts. I understand the they give you some pretty high dosages on Chemo. My guess that would be the trigger more than the Hormone therapy. I had cataract surgery about 10 years ago and I only missed three days of work total. 1 and 1/2 days for each surgery. No pain. If it wouldn't have been for the anesthesia I could have gone back to work the same day. My eyes barely showed I had surgery.
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I too have the beginnings of cataracts in one eye,
Brutersmom I was told it was the steroids that had caused this.
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I’ve had a couple of cataracts growing for at least 10 years and last year my ophthalmologist said they were ripening to the point where it’d be my call whether to have the surgery. For the last 4-5 yrs, they’ve been only mildly annoying--I’d feel the need to clean my glasses and then after doing so, realize I really needed to clean my eyeballs instead. But in the past few weeks I’ve found it much harder to drive at night--oncoming headlights, as well as those in my side mirrors (which aren’t dimmable) are increasingly glaring; and on unlit roads I need to use my brights unless there’s enough traffic for me to guide on the taillights ahead. I first noticed it in late January, when I was driving home after midnight from a showcase in Madison, WI. I needed to use my brights just to find the exit off the Beltline to I-39S/90E towards Chicago; and except for a few large interchanges the entire WI stretch of the road (freeway) was completely unlit. There were points along the way where the oncoming lanes were close enough to mine that I couldn’t in good conscience use my brights, and it was hairy as hell. As soon as we reached Beloit and crossed into IL, the road became lit all the way into & through Chicago. Not coincidentally, the IL portion was tollway till just before O’Hare.
I’m pretty sure that even though I’ve had these cataracts brewing for a long time, letrozole turned up the flame beneath the pot. Tamoxifen can often actually cause cataracts, rather than just accelerate ripening of existing ones. It’s not a tough surgery--Bob was driving, back at work two days later. But I’m worried, because within a year, his night-driving problem got even worse and he had to get his eye lasered. He still has trouble driving at night--one of the reasons he gets home so late is that he drives extremely slowly because of oncoming glare, even on familiar arterials close to home, and the fear he won’t see pedestrians at the periphery. Maybe he needs to get the other one done. My mom had hers done three years apart (by different surgeons in different states), and was delighted by the results. But she never had to drive, much less at night.
But push is coming to shove for me pretty soon. I have to drive to & from Iowa City for a May 14 show, as well as leaving for NC a couple of days later. No way am I going to be able to avoid driving at night. So I have a very short window to get it done: between my return from Texas Apr. 10 and the May trip. I think I’ll get the first one done pretty soon and hope that’s enough to make a difference (and pray I get better results than Bob did).
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Chisandy, cataract surgery two years ago was one of the best things that could have happened to me. I'm 20/20 one eye, 20/25 in the other. But I like my Walmart reading glasses for the itsy bitsy small print. Just do it!
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Think I’m gonna, Marijen. Push really came to shove last night when Bob & I went out to dinner at trendy seafood joint/oyster bar a mile south in the Andersonville neighborhood. We were obviously the oldest customers this place had seen in awhile. Lighting was low-ish but not dark. They brought the menus & wine lists---smallish fonts printed in brown ink on tan paper, with descriptions & accompaniments printed in even tinier type. (GAAAAHHH!!!) Bob couldn’t read it at all. I brought 2.50 readers with me, and could read the menu only by putting them on OVER my progressives or whipping out the Flashlight app on my iPhone. My reading prescription in my progressives is 2.25. I was attracting weird stares at CVS when I went to find something with the tiniest “mice type” font label (a bottle of nail-hardener), trying all the glasses in the place, approximating the same distance from bottle to face as closely as I could for each pair relative to my own glasses. 3.25 gave me a headache. 2.75 didn’t seem any better than 2.50. (I have a pair of 3.0 from Whole Foods, but they do make my eyes hurt a bit). I used to have a pair of lighted Foster Grants that were 2.50, but the frames are thick and the case is too bulky for my purse.
I know some restaurants want to discourage older patrons, since we eat more slowly, drink less, reputedly spend & tip too little and wreck their hip and trendy vibe, turning off desirable millennials they think would increase their bottom line. A lot of places play loud thumping electronic dance music (with the emphasis on EVERY one of the four beats) because it makes the atmosphere less relaxing and encourages people to eat and drink faster and leave sooner, so that the place can turn over more tables per hour (and repel us oldsters). Well, we tip 20-25% and even if I’m having only a glass of wine or none at all, Bob more than makes up for it. We don’t gravitate to the cheapest things on the menu--we don’t mind pricier entrees with larger portions because we’re taking half of it home anyway. This place had great food, good choices, excellent wines and very reasonable prices--especially for the neighborhood. But I’m not sure we’ll be back.
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It'll be a whole new world when you don't feel you have to clean your eyeballs, as you said I do believe my eyes are healthier as well, I don't need my allergy drops so much anymore. Surgery for each eye is 20 min, then go easy for a week. You can see out of the good eye immediately but have to keep it covered with a plastic patch. It is a bit hard seeing your makeup, but a 5x led mirror works for me.
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Marijen, my Mom said the same thing you did when she had hers done. She wore glasses her entire life (well since 4th grade) and after the surgery, she was reading the newspaper without them! That impressed me. I am overdue for an eye exam and am thinking that the AI's have definitely made my eyes a bit worse than they used to be in the last couple of years (I am waaaay overdue - just checked and my last exam was Dec 2013!!) so I am going to consider surgery if it is something I need. Thanks for the glowing review that confirms what my Mom said.
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Going for my pre op tomorrow and the cataract gets fixed 4/6. Can't wait. Am so nearsighted now from the cataract I'm hardly able to see out of that side. It's like wax paper is over my glasses.
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I'll be starting letrozole as soon as it arrives in the mail. I had a hyster/bilateral oosterectomy at age 37, 9 years ago. I'm wondering how much worse my menopausal symptoms will be on the letrozole and what I can do to be proactive. The worst side effects of early menopause, for me, have been vaginal atrophy and thinning, leading to painful intercourse. The weight gain was terrible, as well. I was not very active because I was living in a very harsh climate, very rural area and one thing after another got in the way of me getting exercise.
December 5 I fractured my pelvis in 5 places in and also found my breast lump right around that time. Since my accident and BMX I have started walking 4 miles per day. I'm really hoping that will help to decrease the side effects, especially the weight gain. I've also started using castor oil intervaginally, as I've heard it increases circulation to whatever areas it's applied to. Since my husband is in MI now and I'm in KS for treatment, I havent' been able to find out if the castor oil is working....
suersis I see you've lost 30# in the past year. How long have you been on the letrozole? It is so reassuring to hear it's possible to lose weight on it.
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Thankyou, suersis. It's reassuring to know it will be possible to continue weight loss once I start taking it!
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Suersis - thank you! Weight gain has been a struggle for me since starting Femara. It is reassuring to know that we can lose weight while on this medicine. I will keep trying!
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