FEMARA
Comments
-
My cholesterol has changed quite a bit on letrozole. In the two years I've been on it it went from a total of 133 to 190 and triglycerides from 30 to 65. LDL 69 to 103 and even more interesting is the HDL (the good stuff) from 58 to 74. Doc says not to worry but I find it very disconcerting as there has been no change in my diet or lifestyle. I hope it stops here as I'm not sure what to do to get it back to a little healthier level.
0 -
Hipline, your doctor is correct--not to worry!!!! I wouldn't do a thing differently. Your total is still under 200 (some studies have shown that totals<150 could lead to higher mortality!). Your HDL is very high--which in a woman is quite cardioprotective and trumps both your LDL (slightly high) and TG (normal). And your LDL:HDL ratio is still quite low--beautifully so. Keep on doing what you've been doing. (Most people with even such a high HDL would still kill to have a total below 200).
BTW, over a month in to letrozole I still have no idea what a hot flash feels like, knock wood. (Never had anything worse than night sweats during menopause). Only SE I'm finding so far is the dreaded lower metabolism. Of course, Thurs. I see my MO and she'll probably order a lipid panel (or ask my PCP to do so). But don't want a statin even if my LDLs go up--just cut way, way back on refined carbohydrates and sweeter fruits. Besides, my HDL is in freak-of-nature territory....92! (Might ask her about metformin--I know it too raises LDL, but it also makes weight loss easier; and if she insists I take a statin, which raises glucose and a1c, I'm going to demand metformin. Besides, there's preliminary research that says it inhibits tumor growth). Will also ask about Prolia--I'm willing to put up with a couple of weeks of flu-y feeling twice a year if my bones can stay strong without corroding my esophagus.
0 -
Interesting discussion about cholesterol! I've had a call back due to my latest results but I'm yet to see the results as I don't see the Dr until next week. I don't want to take a statin if it can be avoided.
My latest bone density was fine but a big drop. My surgeon said it isn't a problem but I need to speak to the MO.
0 -
Statins cause muscle pain, I couldn't take them and I'm glad I couldn't. My cholesterol is fine now - it's all diet.
0 -
The discussion of UTIs is quite interesting. I've been on letrozole for almost 3 years, and have every side effect in the book! The most difficult side effect has been incontinence (MO blames it on letrozole). Real incontinence....the urine would just start pouring out of me, at home, at the grocery store, pumping gas, etc. It was mortifying. I started using Depends, which at least allowed me to get out of the house without worrying. I ended up with a uro-gyn, all of the testing, etc. Tried Mybetriq, which worked for a couple of months. On New Year's Eve my uro-gyn injected 20 Botox shots into my bladder to control what she thought was spasming. That has helped, but now it's difficult to empty my bladder.
My point in posting this is that it seems letrozole has some impact on bladder function, UTIs, etc. I haven't found any studies discussing this, but if anyone knows of some, please let me know. I'm convinced that no one knows really knows the extent of the side effects from letrozole (also from chemo, but that's another story). I'm grateful to have the option to take letrozole, but I just wish docs and patients had a better understanding of its side effects.
0 -
from drugs.com
Other less frequent (<5%) adverse reactions considered consequential and reported in at least 3 patients treated with Letrozole, included hypercalcemia, fracture, depression, anxiety, pleural effusion, alopecia, increased sweating and vertigo.
First and Second-Line Treatment of Advanced Breast Cancer
In the combined analysis of the first- and second-line metastatic trials and post-marketing experiences other adverse reactions that were reported were cataract, eye irritation, palpitations, cardiac failure, tachycardia, dysesthesia (including hypesthesia/paresthesia), arterial thrombosis, memory impairment, irritability, nervousness, urticaria, increased urinary frequency, leukopenia, stomatitis cancer pain, pyrexia, vaginal discharge, appetite increase, dryness of skin and mucosa (including dry mouth), and disturbances of taste and thirst.
Postmarketing Experience
Cases of blurred vision, increased hepatic enzymes, angioedema, anaphylactic reactions, toxic epidermal necrolysis, erythema multiforme, and hepatitis have been reported. Cases of carpal tunnel syndrome and trigger finger have been identified during post approval use of Letrozole.
0 -
Suersis, I don't need to gain any weight! I've just got it back to a good level! I'm eating well, I'm exercising.....I'm not sure what else I can do....
0 -
Stopping treatment can reverse acquired resistance to Letrozole (Femara)
0 -
I Marijen, I'm now on my third time through with letrazole/femara. In 2008, it was the only anti-hormonal that worked with my pleural mets and I got three good years with it. Then I tried a variety of direct and indirect treatments, including sealing of the pleural linings. When the cancer progressed to my liver two years ago, I tried it again, but the side effects were too intense, so I stopped. Last year, I resumed it again and have been free of unwanted effects. It seems helpful for the pleural mets, though the liver and peritoneal mets continue to progress. I'm on hospice now and they cover it, I think because it's not curative treatment.
Also, I enjoyed a period of estrogen (estradiol) that we believe desensitized the cancer to letrazole/femara.
My femara history here: https://community.breastcancer.org/forum/78/topics/726592?page=248#post_4601829
Many blessings, Stephanie
0 -
That was an interesting array of symptoms. I have hair thinning and trigger finger and the weight gain which doesn't keep coming fortunately since I am like a rabid dog trying to prevent any more. I still keep reminding myself, at least I can actually use Letrozole and it is found to be effective in reducing recurrence risk so at this point the benefit outweighs the side effects. Doesn't mean it is easy for sure
Edit added: Stephanie I see you posted just as I did. Thanks for sharing your story- read it when you posted but just read it again. The more I learn about breast cancer the more I learn I need to know.
0 -
Longtermsurvivor, thank you for your post. I went back and read the one you referenced. Yours is quite a story, the way the cancer can change. You must have had a very good innovative doctor willing to try anything and everything? Especially interesting that you used topical testosterone at one point. You are still young. I'm sorry for what you have endured, but so gracefully.
0 -
HI Marijen,
Yes, I have a wonderful oncologist of 23.5 years duration! Just saw him yesterday for our monthly love fest, er, appointment.
He thinks outside the box and entertains my farfetched ideas too.
btw, while I'm on hospice, he urged me to continue topical testosterone for the muscle wasting/cachexia that comes with advanced cancer.
Healing regards, Stephanie
P.S. I think cancer years are like dog years, so I'm really ancient after 25 solar years with cancer. Not nearly 60, but closer to a redwood tree.
0 -
My system must be odd...I have only been on Femara for about three weeks, but I have had so much energy since I started taking it. I tried taking it in the afternoon/evening at first and did not sleep a wink. I wanted to get up and rearrange the furniture. I moved to taking it in the morning, but after about 8 hours I needed a nap, which was at about 3:00 in the afternoon and that did not work with my work schedule. I now take it at lunch time and I have energy and don't crash until bedtime. I do sleep well though. I have noticed that I have a bit more gas and some occasional abdominal cramping and I am a bit sore when I wake up in the morning. The other side effect is my appetite, I get hungry sooner that when I was not taking it. I hope that these mild SEs are all I experience. I do love having the energy, especially after grueling chemo/radiation fatigue I experienced.
0 -
These drugs can have a mild steroidal effect on certain people. Sleeplessness is a fairly common side effect with the AI drugs, but you are the first person I have heard that had increased energy.
Enjoy it! Hoping that it will last for you. 0 -
I was starving too and didn't realize I was overeating until the seasons changed and I couldn't get into my winter fitted pants after a summer of pill on shorts. Now am limiting carbs and sugar to prevent insulin spikes and have dropped a few of the 14 lbs letrozole helped me put on
0 -
I agree, finally losing weight but it is with more vegetables, less carbs and exercise. Gosh it is not as easy as in the past but then again I am not as young as then. Way to go Chloesmom.
0 -
Hi fellow Femara ladies. I have some comments about my experience and am hoping for some of your thoughts. I am now about 1 1/2 years on Femara post the "works" treatment for Stage 3 breast cancer. I had my ovaries removed and started the AI shortly after that. I have had pretty nasty hot flashes (the soaking kind) and all of the good body aches and pains that seem to go along with the AI. My MO would like to change the AI to see if we can reduce symptoms but I am quite reluctant...I figure it is better the devil you know.
Now I seemed to have developed quite significant wrist issues bilaterally. The pain is waking me at night and my wrist (right) will even lock. My DH is a rheumatologist so we are pretty sure I have developed de quervain tenosynovitis.
This is really limiting my abilities to do activities of daily living and work. I am considering trying to get some disability.
Everything I read indicates AI's are here for as long as I can tolerate them. I hear so many stories of recurrences after finishing AI's or tamoxifen. I am scared to even come off for a day! Just wondering if anyone has similar experiences or advice.
Thank you.
0 -
Annie, I'm so glad you wrote on here. I too have been diagnosed with de quervain tenosynovitis. I have been wearing a wrist sprint since before Christmas. I'm going in 2 weeks to hopefully get a steroid shot. I wondered if there was a link to the Femara or not. I will definatly be watching for answers to your questions.
0 -
De Quervains usually effects the extensor tendon of the thumb ( like hitch hiking). I had it when I lifted my baby years ago. The first step is rest and splint. The second is a cortisone injection. The third is to thin the tendon that is getting jammed as it tries to glide through the pulley by the wrist. After surgery I had no more problem
I have gotten trigger finger in 2 thumbs and a finger. The cancer rehab physiatrist I go to considers these treatable and temporary. 2 months ago I couldn't hold a toothbrush. I went to a hand therapist (OT) who provided gloves and a splinnt. Now recovered from this. The doc wrote a note for temporary disability but I see her next week and anticipate that she will clear me to work with my hands. I have a bad neuropathy in my foot from chemo that limits my balance and hope to continue on disability due to that as I need to balance in my very physical job so it's a safety liability issue
0 -
I too had it but it finally went away believe it or not with frequent icing and later heat. Wasn't sure if it was from overuse of wrist or the medicine but hope it never comes back and hope you do get rid of it soon Annie (and anyone else!
0 -
Anyone have finger tingling and numbness on letrozole? I was on exemestane (aromasin) for 2.5 years and switched to letrozole last month. Now I have numbness in toes sometimes and worse, fingers. The toes happened on occasion with exemestane so that was not new, but the hand stuff, well that is. I am about to give up on this stuff (AI's) because they just wreak havoc with my life too much. I was almost 100% ER+ so MO really wants me to take something since I also had another kind of cancer years ago besides the DCIS. I am really trying here. In June it will be 3 years on these pills and I am about to throw in the towel. Every single joint in my body hurts as well as brain fog, and just generally feeling like shit.
0 -
April, I have not had the tingling but have had quite a few problems with letrozole over the last 6 months. It started with tendinitis in my left wrist in July, a patellar fracture in Sept (no accident or fall - no idea why the fracture), trigger thumb in the other hand in Nov. The tendinitis and trigger thumb caused me to drop a pot of juice from a pork roast and I fell in the kitchen, fracturing my wrist. My PCP said a fall from a standing height should not cause a fracture and was therefore "osteoporosis equivalent" so he put me on Boniva even though my Dexa scan in May was normal. I thought about it for a month and finally decided that the fractures made the risk far outweigh any supposed benefit. I have not discussed it with my MO yet but saw the surgeon's NP recently. When I told her about the fractures she asked if I had stopped the letrozole.
It was not an easy decision but I just felt like side effects had gotten too dangerous.
0 -
I feel pathetic for bringing this up when so many of you have such bigger concerns, but it's bugging me, so I'm bringing it up anyway. Is anyone having acne issues on Letrozole? Have you found anything that works? I've tried OTC products with no luck and am on my second prescription cream from dermatologist. I did not go specifically for this problem; I just go yearly. I've always had someone of an adult acne issue, but it is so much worse now. Dermatologist doe not want to put me on any oral meds on the off chance that they may interfere with the Letrozole, and I agree. Just wondering if anyone has found anything that helps. Thanks.
0 -
Kbee, I find that I get the occasional zit on my chin a bit oftener these days, but benzoyl peroxide seems to dry it right up. Also Bare Minerals makes a flesh-toned powder for spot treatment of pimples (applied with a small brush till it blends in, and before I started on letrozole it worked well for me--haven't tried it yet since my BC diagnosis. You might also ask the derm whether this is acne vulgaris or, rather, rosacea--which often presents with an increase in pimples. You might have to be more vigilant about sun protection, as well as spices, caffeine and sudden changes in temperature. Once your body adjusts to lower estrogen levels your skin might clear up on its own.
0 -
Karen.. I'm not on Femara but Arimidex and
had a big acne problem. I've never had acne issues as an adult but this started with the oophorectomy/Arimidex. My acne is all over my chin with some under my nose. I had it really bad in the beginning (5 months) but it seems in the last month or two it has really slowed down significantly. How long have you been on Femara? I struggle with this still but it's much better than before, hope it stays that way. Maybe in time it will improve?PB
0 -
April, I have finger tingling and numbness in both my fingers and toes. I was on taxol previously so I thought that the neuropathy just never improved when I stopped taxol. If it's a SE of femara, then that explains why it never went away. One of the nurses advised me to take Vit C which I must remember to do.
The soles of my feet especially under my heels feel tender and painful. Has anyone else felt this or could it be a SE of faslodex?
0 -
Aoibheann, that is what I am feeling on letrozole. Lots of pain and numbness/tingling in hands and feet. Nothing new on the feet as I said because I had this with exemestane (Aromasin) but the hand stuff was just pain with that and now I have the numb/tingling stuff. I never had chemo or Faslodex so that could not be it for me at least. I am hanging in but the aches and pains are growing daily and not sure that letrozole is for me. I may go back to exemestane (never thought I would say that) if by the end of this 90 day script, things get any worse. Ugh! Hope you feel better. Hope we ALL feel better!
0 -
Hello all,
I've not posted in a long time. I'ts been interesting to learn of each individual's response to medication. Luckily I have never had the joint pain. Some years ago I had carpal tunnel release and the same for trigger thumb but no further problems.
I've been on letrozole for 10 months and also another medication unrelated to ILC. I do have very dry skin and it seems to come from the inside out. I have an acne-like rash, especially on the temples, no eyebrows, thinning hair and most troublesome, urinary incontinence. I have entered the Depends era. I have great thirst but do not have diabetes and I'm not overweight.
Is anyone else experiencing these issues?
Best,
Hygeia
0 -
Yes, not quite incontinent but absolutely have immense problems making it to the bathroom on time without some leaking so now wear one of those "pads" that are made for this. I did not know the AI's could help to cause this so I thought it was me. Now I get it. It seemed to come out of no where and well...now add that to the growing list of why I really don't like these drugs. Ugh! Damned if you do as the say.
People may wonder why I put myself through this for DCIS but I was greater than 95% ER+ AND have had another cancer years ago so I can't imagine not doing all I can to not recur or get another one. My MO REALLY wants me to take these drugs and every time I want to quit, she lets me take a break so it is what it is.
0 -
Thank you, April485, for your entry. It helps to validate my sleuthing. There is still so much to learn and I wish you strength and comfort.
And I want to tell you an amusing aside. My grandmother's telephone number was 485 at a time when there were only three digits in a phone number and they were delivered verbally to an operator who knew the caller, where they lived and just about as much information about the families as the national census.
Be well, April485, and know that you are among many who are doing the best that can be done to stay in good health. And DO stage your coup.
Best,
Hygeia
0
