FEMARA
Comments
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I have trigger finger on my left hand (BC side) thumb. What do you do for this. Currently on letrozole. Does this ever go away? Should I be seeing someone for this?
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I developed tendinitis in my left wrist and trigger thumb on my right hand. I had both of those injected and they are fine now.
I just stopped taking letrozole because of fractures. My left patella cracked with no precipitating fall or injury. My left wrist had a small non-displaced fracture after I dropped a pot in my kitchen and fell. My PCP says a fall from a standing height should never cause a fracture and he dx osteoporosis despite my normal Dexa scan. I have found that the term "fragility fracture" describes this situation. I feel like I have tolerated the annoying side effects and have found ways to minimize most of the quality-of-life side effects and have now experienced the dangerous ones. For me, the cost of this drug is too high for the potential benefit.
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I have trigger finger in my left middle finger. Fortunately I have many weak areas but flipping the bird is not my forte so things worked out that way.
I do not have the urinary leak deal but had three awful UTIs with bleeding and there are some issues with things being a bit more, um, delicate there? Sigh. God is good and I am here and that is all that matters in life but seems like a perfectly mean thing to have happen... 
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What a great story about the phone number Hygeia! Love it. 485 is my birthday (sort of) as I was born April 8, 1955. So, I tend to use it in screen names for that reason. My real name is Joyce..LOL. I still answer to April though since I always liked the name and my best friend's DD is named April.
As to "trigger thumb/finger" I know my hands are heading that way and I don't know what will transpire if hands get much worse as I need them for my job for when I type case notes, do intakes etc. ugh!
Enjoy your day my partners in the land of estrogen deprivation. We just all do the best we can and that is all we can ask of ourselves in this life.
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You are right, adjusting to the new normal is the best approach!
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I had trigger fingers but that phase passed after about 6-9 months.
Enjoyeverymoment, I use Vagifem for dryness issues with my Onc's blessing. It has been wonderful ☺️
(((Hugs))) ladies, you are very resilient 😀
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Tammy M43. What did you do for the trigger finger. I worry that mine will continue to get worse.
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Does anyone have trouble with their feet while on Femara? When I first started taking it almost a year ago, I didn't notice many side effects until about 6 weeks in. I still say my side effects are manageable and I'm not ready to switch. The trouble with my feet started when I would get up from sitting. It just felt like the muscles at my ankles had shrunk and the bottoms of my feet also hurt. Everything would even out within a few steps or so. About a month or so back, I noticed that I have pain on the top of my foot below my toes and to the outside. If I press on the area, I don't have any pain, it is more internal. It doesn't hurt all the time, but I do feel it daily especially at night. Any ideas?
My other side effects are joint pain (knees, ankles, elbows and hips), weight gain, and not much appetite at the same time.
Thanks ladies!
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"You are right, adjusting to the new normal is the best approach!"
No it isn't. We all have choices.
I choose not to pee in my pants 3-4 times a day.
I choose to brush my teeth or write a note without pain.
I choose to be active instead of sedentary.
I choose to walk, run, bike, hike, ski instead of "gentle yoga" or a brisk walk to the mailbox.
I choose to sleep well at night.
I choose activity over fatigue.
I choose "50 is the new 30" over 80.
I choose to have and enjoy sex.
I choose to remember where I left my keys.
I choose the old normal.
I choose not to take hormonal therapy.
The mantra so often repeated on these boards, that one must suffer through hormonal therapy or get cancer is a false choice.
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No Texjerseygirl, some of it is our reality whether or not we want it to be. I disagree that I have a choice not to have joint pain because if wishes were pennies as they say...
I was very optimistic when I began these drugs. I was going to be one of the people without all of the serious side effects. I went into this with nothing but positivity and every day I swallowed that pill, I talked to it and said "Thank you little pill. Thanks for helping me stay healthy" and I tried to embrace the medicine.
I refuse to make this about me not "choosing" to not have pain. I did not choose BC and I certainly did not choose to be in constant pain from this little pill. That is for darn sure.
If you think that "choosing" works for you, I sincerely hope that it does. May you blessed by not having a moment of how many of us feel every single day we take this medication because that would be one person that did not suffer. May that be you.
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I think you misunderstood me. I edited my previous post to make my point more clear.
You sound just like me except I choose not to take AIs because the quality of my new normal sucked. Like you, I also started AIs positively not knowing of any of the side effects. I just took it like it was multi-vitamin or something. But it was a horrible and debilitating experience that I choose not to do any longer. I was commenting to the lady who was so cavalier that we should just accept life post AI as the new normal. I don't fear the small chance of recurrence as much as I hated every day that I had to wake up while on AIs.
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Ahhh, I stand corrected my friend. I applaud you for your bravery. We do have a choice indeed, one that I am inching toward myself. I just wish that they could find a way to give us meds that don't have these side effects but offer protection but alas, that is not yet going to be the case. Enjoy your choice!
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I also wish there were drug choices without allof these side effects. I have already had a recurrence, so I really have little choice. I eat healthy, exercise, am thin, and active. But I still had a recurrence. I wish I had more options, but with 3 kids, I choose to take it and put up with it.
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I really feel for those of you with young children! I cannot even imagine the pain we experience with these drugs and having to care for little ones when feeling so lousy some days. Also, Kbeee, I totally get it that your family has to be front and center when making the decision to continue this sometimes evil pill.
I get through my work day and then am grateful for respite (after making dinner cause hubby can't cook worth anything and we would eat PB&J for all meals..LOL) and then the bliss of just resting. I never used to be like this! I would go for a nice walk, ride my bike, go out to the stores and browse etc. Now, hubby does much of the housework and grocery shopping (except cooking as noted above and laundry don't want pink/grey whites..LOL) so that is about it for me. I am hopeful that this spring, I can slowly work back up to walking more than a few hundred yards without having to stop due to knee and leg pain. Also, the new wrinkle with my hands and the light but very real urinary incontinence (I sneeze, I pee, I wait too long, I pee etc.) that is vexing me and making me wear one of those large gel pads. ugh!
I miss my life!!!!!!
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suersis, I agree with you. There seems no rhyme or reason as to who develops mets and who doesn't. My close friend was on Femara for five years and stayed clear, she stayed clear for three more years and then developed bone and lung mets last October. You didn't take AIs and stayed clear longer than her. My friend was put back on to Femara immediately but it had little to no effect and her meds have now been changed. Good luck to you.
To those of you suffering difficult side effects on Femara, I wish you all well. I am fortunate that I haven't had any side effects that cause pain or discomfort. My cholesterol is elevated though and I am having an almost impossible time losing weight. I have trigger 'thumb' but I had that pre-Femara. I also have various aches and pains in my hips and knees, but again arthritis was diagnosed in my lower back and knees long before my cancer journey began so that's nothing new either.
Be well all and have a great weekend.
S.
ps/ I take Letrozole (generic Femara) and have used two different brands, both have been fine (the brand got switched when I changed my pharmacy)
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Tex/Jersey- (I am from NJ
I don't know that you meant to be mean spirited but what I truly meant was that I guess there are some things I am willing to tolerate with Femara, one of those weighing the good and the bad. I have a great oncologist and he is considering switching me to Tamoxifen if I just say I want to. I am exploring all I can do to make the best decisions. A new normal does not mean that no one has the right to choose whether or not to take their AI. Everyone is different in what degree of symptoms they find tolerable vs not worth taking the medication. A new normal for me has been no sensation in my breasts. A new normal for me has been stress when I developed symptoms of another cancer that was fortunately only "pre cancer". A new normal for me is to try to open my mind and understand where everyone is coming from and respect the choices of all who make decisions using the best information they have. I do applaud you for your choice, I am sorry if it did not sound like I did. 0 -
I also have the foot pain ml describes. It feels like it's a deep black and blue inside. But I also have a post chemo neuropathy and get sharp steak knife like electric shock pains in my foot
Just got diagnosed with cataracts and have to have surgery. Was ok a year ago and now 3 x as nearsighted. Also had a retinal bleed in October 6 months after starting the AI. Is it age or the meds? Seems to be strange I got both when they are possible side effects. Hanging in there. It all beats mets
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What do you take for the joint pain.....does your MO give pain medication?
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Please know that I did not intend to imply that anyone does not have freedom to choose whether the side effects of femara are sustainable or not. To me the new normal means the things that I do NOT have control over---as TexJerseyGirl reminded us all if the quality of life a medication gives you is not sustainable then sometimes it might not be worth it! Sometimes the written word is not really as clear as I would like, my side effects at this time are not bad enough to stop it but I certainly am considering a switch if anything gets worse.
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I've been taking Femara for 2.5 years now, after Tamoxifen did a number on my uterus and I had to have a hysterectomy. I tried all the other AI's and couldn't tolerate the side effects. Side effects of Femara are just as bad, but it is either take it and suffer, go back to Tamoxifen and stay on it for another 5 years and suffer with it's side effects, or take nothing. I haven't been brave enough to go without, and do not want to suffer with Tamoxifen for 5 more years. I have joint and muscle pain all over - it is easier to say that only my neck doesn't hurt than to list all the things that DO hurt! Hot flashes are horrible, I have frequent low-level nausea, and I don't sleep worth a damn. My bone density is still in the normal range, but both forearms lost 15% in the 2 years between DEXA tests.
I feel like I've been wishing my life away, looking forward to the time when I can stop taking this medicine. Well, oncologist is going to "turn me loose" this year. May will be my 5 year anniversary of surgery. My oncotype score was 8, I think! I just remember that both oncologist/surgeon and RO said they'd rarely seen a score that low. No need for me to continue taking an AI. Now that the time is near, I find myself scared spitless at the thought of a) not taking any medication and b )no longer getting 3 professional breast exams a year! I feel like an idiot - this is what I've been looking forward to, I should be happy instead of so afraid.
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suersis, yes I have started taking a statin.... maybe I should quit and see if that helps. thanks.
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I've been reading this thread for three months and contemplating whether my experience would be helpful or harmful to participants. I think it's an important story to share, because my perspective is unusual.
As someone living with advanced breast cancer, my reasoning for taking and avoiding Femara is very different than that of someone taking it to avoid a recurrence.
AIs weren't even around when I was first diagnosed with cancer or recurrence. It took me a long time to even try Tamoxifen for the recurrence and when it wasn't effective, I tried Megace. When that wasn't effective, there was radiation to a big section of my affected chest wall. The tumors never all went away, but they changed from ER+/PR+ to ER-/PR-. When the aromatase inhibitors came along, they didn't make sense for me. Plus, I was premenopausal.
I was diagnosed with some lung involvement, and many years later pleural mets and effusion turned up. A biopsied tumor turned out to be ER+/PR+ again. By then I was post-menopausal (long story), so I began taking Femara. Though I suffered many unpleasant, unwanted effects it was preferable to pleural mets & effusion. A partial remission for 3 years was encouraging. But when the cancer resurged and Aromasin & Faslodex failed to control it, I actually switched to taking estrogen (estradiol).
Estrogen gave me some stability (well, really slowing of progression) for 2 years.
When that failed, I retried Femara for a short period, but the side effects were crippling the second time around. So I stopped.
About a year later I had lots of progression and tried Femara for a third time (Accord formulation with lots of additives) and have had no unwanted effects. It didn't melt away the cancer, but is part of slowing its progress and relieving some uncomfortable symptoms.
The predicaments of members with earlier stage breast cancer has made me rethink my choices and I honestly don't think I'd go back in time and take Tamoxifen or an AI to prevent recurrence, because of low chance of benefit and unpleasant, unwanted effects. But, I'm someone with underlying disease conditions who tries to avoid unnecessary medical interventions. I'm willing to take and live with the risk of doing too little, because doing too much has its own risks.
Knowing then what I know now, I'd counsel myself to keep making decisions that are wise for my unique me, not what's right for others.
Just some noodling from someone with a different perspective.
And, I'm very grateful that Femara is being good to me now. This seems like a wise use of a powerful drug.
warmest healing wishes for all, Stephanie
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Thinking positive, sorry it has taken me so long to get back to you re the trigger fingers. I didn't do anything and it resolved itself!
As lots of the posts have said, everyone us different. For me I had joint pain and stiffness early on but I concentrated on exercising and eating well and I'm now coping well. Perhaps I'm just lucky but like SissyK, in part it feels like a security blanket!
SissyK, happy days for you.....may you stay healthy (((hugs)))
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Tammy_M43....mine seems to get worse sometimes. I can't bend my thumb most of the time and when I do it hurts like crazy. I think o need to let my MO know time I go. Need to make my spoof for my Mammo and ultrasound and MRI next month. Really nervous about that right now.
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Two months in now, and the only SEs I’m experiencing with generic (Roxane, subsidiary of Boehringer Ingleheim) letrozole are slower metabolism, morning stiffness and some occasional twinges in my ankles--but I’ve had those for ages. Have yet to test my blood lipids, but I know there’s no way I’m adding a statin to the morning and evening shot glasses of pills I have to take. (Perhaps I’d be willing to add Metformin--Bob & I are looking to join the TAME study if it’s still open, which is for cancer and heart patients as well as those at risk for both. But my MO and PCP are big believers in lifestyle changes rather than more meds--except the MO wants me to start Zometa and my PCP says just exercise). I have three more pills, and then I will crack open the first of three 30-dose boxes of brand name Femara from NovartisUK. If I start getting increased SEs, it’s back to the Roxane--and I will consider the Femara an expensive but necessary object lesson.
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Thinking Positive, I've just had my 3 year check up and it is a nervous time! I have good thoughts for you (((hugs)))....
ChiSandy, I'm also against adding a statin. My cholesterol is up but not enough for that yet. What are your thoughts around statins
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Can anyone tell me if hair comes back to full thickness following finishing Letrozole? My crown is getting increasingly thin and it's really depressing me....
Has anyone switched to another say, Arimidex and the hair has improved? In other words can switching improve things?
I have been on Letrozole since Sept 2012.
Thanks all.
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I just noticed just recently that my hsir seems thinner but don't see any hair coming out. I have been on letrazole for a year now.
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ThinkingPos,
I don't think it is falling out as such. just not actually growing. I did hear this drug makes the follicles close down. I just want to know if it reverses really...
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winter socks. Thanks for responding. last time I went to get my haircut I had to cancel because it didn't seem to have grown and then when I finally did go I asked her If it's Seems thinner. So that would explain why I don't see really anything fallingcoming out. I just thought it my imagination.
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