FEMARA
Comments
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habB, it sounds like you are feeling completely miserable and I’m so sorry. Even though your MO is out, is there a nurse or nurse practicioner on duty who you can talk to today? It sounds like you shouldn’t try to drive back home in this state of mind and body, without some kind of resolution, or at least acknowledgement from the medical people in charge.
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Hapb - my heart aches for you. I hope you find some relief soon. It's a mystery why this drug affects some and not others.Sending ((hugs)).
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HapB- I'm so sorry that my post caused you some distress. It was not my intention to put you down or to make anyone feel that they might have some control over which SEs they will experience.
I just felt like we needed someone like PontiacPeg on this thread (she's from the arimidex thread) - to remind people that not everyone gets SEs.
To put things in context: I was diagnosed in early Nov. 2015 and had to wait 9 weeks for surgery because of holidays/surgery scheduling delays, etc. During that time I read thousands of posts about surgery and treatments just so I could be better prepared. I was also searching for some nugget of hope in these threads. My anxiety level was through the roof while waiting for surgery and I was sure I was going to die of a heart attack from the stress. In the meantime, trying to keep a positive face for my family. Anyway, the only time I broke down and cried in front of my daughter was after reading a post by a suicidal woman on this thread. I'm sorry I can't remember her name, but she said that death was preferable than living with the SEs of these drugs. So my post the other day was for those newbies who are reading these posts as I did - looking for something that might ease their anxiety. I just wanted to provide some counterbalance to the misery and let them know that it's not a given that everyone suffers while on this drug. For me, I did not get rads or chemo, so the AI is the only weapon I have against this beast. Femara is my friend and allie in this battle. If there comes a day when the SEs become too much to bear, I will at least know that I did everything I could to prevent recurrence, and hope that by then, we would have other choices.
I will continue to post my positive experiences on this thread and others, but I will try to put a warning up front that my post is meant for newbies and in no way meant to deny or minimize the significant level of pain that others feel while taking this drug.
I hope this helps. I truly feel sympathy for what you are going through and hope the SEs subside or that you find relief in other ways. I have heard that accupuncture can help, as well as upping your VitD levels, and taking Claritin once a day. Perhaps lowering your dosage? Reports from the first clinical trials on Femara suggest that taking as little as 0.5 mg can be as effective as the full dose. This might be something to discuss with your MO.
Have a great Thurs. everyone! I had an oopharectomy and fat grafting done yesterday, so lying a bit low today. Pain is not bad, just a bit sore, (LOL- here I go again, trying to put a positive face on things 😄).
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Ok. I'm now dropping this from favorites. Really don't need the insults.0
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I am one month on Femara(letrozole ) right now with Lupron every three months as I was not in menopause. I have neuropathy in my feet from chemo but now I have aches in the bones there which is manageable, just annoying. Hot flashes but I am going hot, cold, hot, cold. Is that normal? And today I have horrible pain in my right arm(surgery side) It's muscle with some joint aches. I put on Topricin cream that CTCA gave me but it's not helping. Neither is Advil. Is this normal?
Also are side effects cumulative? I think overall I am handling this well but am I just starting feeling the side effects? Do they get worse over time?
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Hapb - Everybody has their own issues and their own experiences on these drugs. As somebody just starting on out this drug I VERY MUCH want to hear all sides. I want to know the bad, the good and everything in between. If people are doing well I WANT TO KNOW. That tells me that it's not a guarantee that I will suffer or that it will be long term. These drugs can be scary and only hearing the bad makes it worse.
I'll remind you that we were on the radiation board together. You had a VERY easy time with radiation and told people a few that if they did not want to have skin issues they should do as you did and not use any creams. I had HORRIBLE issues. I was very badly burned, blistered, had skin literally falling off, was weeping, couldn't work, wear a bra etc and I am still recovering from radiation nearly 2 months later. I didn't get insulted at your comments. You were offering up your own experience. Grandma3x is offering up hers.
We all are dealing with cancer. It sucks for all of us no matter how we are reacting to treatment. Call your onconogist immediately and discuss your issues. There are other options and there's no need to suffer to the point where you cannot even function. Also have to looked into accupuncture? I have a consult next week to see if she thinks she can help with my neuropathy.
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HapB and all,
We are jumping in here to remind you all that this thread is for a polite discussion of ALL experiences from everyone taking Femara -- as stated above, the good, the bad, and the ugly. Each experience is highly subjective, and everyone will have a different experience. We invite all members to share their story; if others' stories don't exactly match your experience, that's okay -- it doesn't mean it's wrong or shouldn't be shared.
Please try to remain respectful of all perspectives here as we continue to strive to be an inclusive, welcoming, and constructive support community.
Thank you.
--The Mods
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I second Mquara and the Mods here. I am waiting my BCI results to see if I will be swapping to an AI. I want to hear everyone's opinions....good, bad, indifferent. I'm afraid of going on it but want to be prepared if I need to. I know I've seen lots of posts from grandma3x and they've always been helpful. I don't think anyone here means any disrespect and, for me, I don't want to see anyone drop from this thread. I want everyone's advice!
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Thank you mods.
This thread is titled Femera", not "horrible effects from Femera". It is a place where we can vent frustrations, ask questions, post positive things, and share experiences. We're all doing all we can to navigate through these murky waters. Everyone's body reacts differently to all of the treatments.
Grandma, please do not leave the thread.
I work as a paramedic and often see people because they are having a bad reaction to a medication (or combination of medications... sometimes it is the combination that's bad). These medications are ones that thousands of people take successfully with few problems. It does not mean it is a bad medication. It means it is a bad medication for that person.
It is important for those bad reactions to be shared. Others can learn from them and some people may have tips for dealing with them. It is equally important to hear of people who are doing well.
I was lucky to do well through chemo both times, and have done pretty well on hormonals. During radiation, I burned horribly. I did everything I was supposed to do, but it did not matter. I had huge areas of moist desquamation which was worse than childbirth as far as pain. It was not because I did anything wrong. It was because I am a person who also has very strong reactions to the sun. It also is because I had multiple tumors, including one under my pec muscle, and it was a recurrence, so some of the radiation tangents likely overlapped. It was the most horrible thing I have ever been through. I was very thankful to have this place to vent during treatment. That being said, I was very very happy to read that most people in my rads group did well on radiation. I have never discouraged anyone from having radiation. It was horrible, but so far, it has kept my cancer from coming back. For that I am grateful. Thankfully, it was a treatment that only lasted 6 1/2 weeks. A treatment that last 5 to 10 years is a whole different ballgame. If your body does not tolerate it, it is not your fault. You have to discuss it with your oncologist and find a more suitable option. That option may include a different anti hormonal, or it may include taking nothing and just being monitored.
We're all trying to do our best in our situations. Let's be supportive
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Thank you Mods, and please stay on GrandmaB; you gave me the eye drop recommendation that really helped my dry eye. I was also thinking of departing this thread after someone made a churlish comment about one of my comments. One of the great things about this community board has been the knowledge I've picked up and also shared - this is such a complex disease that we're all dealing with on top of the stress it brings into our lives and to be able to share information, questions, complaints, has been very helpful for me. In addition to GrandmaB's eye drop recommendation, I also started taking the 5k mcg Biotin 6 months ago and have noticed an improvement in my nails. Also started using Nailtique, which I read somewhere here. These are the kinds of things I'd never hear from my MO but I do from you all, and I'm grateful you all show up and share.
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Mquara,
I'm also on a similar treatment plan as you, though I didn't have chemo so I can't speak to your neuropathy. I do, however, know what you mean about the body temp irregularities. I have an article about that I'll send if I can find it. Lupron really does/ did weird things to me. In some ways I think I've adjusted, in others I'm still whacked out. For example, tinnitus comes and goes, lately it's been come, as I type right now I have a loud buzzing in my head. And, yes! The arm pain is totally normal. I read somewhere on this board that the aches caused by AIs can be exacerbated in any damaged area of the body, like a surgical site or places where arthritis resides, for example. I went to PT, acupuncture, and now see a chiropractor specializing in active release technique. Jury is out on that. So far all that really works to be fully pain free are several margaritas consumed on a sunny afternoon, but I've quit drinking since I heard that also reduces risk of recurrence, so... good luck to you, my friend. I too am a Jersey girl, living in upstate NY.0 -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30123...
Mquara,
Here's the link to the article-
Feeling too hot or cold after breast cancer: Is it just a nuisance or a potentially important prognostic factor?
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I just passed my 5th year on an AI and am very willing to continue for another 5 years. I was originally put on Arimidex. I tried to deal with the side effects for a few months, but they became unbearable. I was achy in most joints and my knees were really bad. I had trouble walking and stairs had to be climbed very slowly. Driving was particularly difficult. I also developed some skin issues that appeared right after starting Arimidex. My MO gave me 'AI holiday' to see if these issues cleared up and they did! I was next put on Letrozole and found that I tolerate it very well. My hair thinned a little (I now take Biotin) and I have occasional aches and pains, but nothing that compares to the Arimidex. I also need to watch bone density. But if Letrozole is going to keep me NED then, in my opinion, it is a small price to pay.
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hi all what we need to remember is to be kind to each other
that this BC disease and MBC comes in many shapes and forms ..the resulting treatment does have life long repurcussions.
Minimal SE for me i believe are in part due to not having received prior chemo rads before starting AI Femara.
I was on low dose blood pressure and statins ..l have not had elevated readings and have been on letrozole for 15 months.
Important to check calcium have had bone density test and no bone thinning yet...just hair.
Important to take calcium and vit D
Walking swimming and yoga are best for joint SE whichfor me mostly occur in winter
Hot flushes and prickly heat worse in hot humid weather so stay cool.
PERHAPS moderate to extreme side effects of AI therapy are related to whether a patient has had chemo radiation and presents with other health issues.
All the best Bright
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Hi Ladies. I am new to this thread. Thank you for sharing your journey and insights. I was premenopausal when I began my journey. Went through a lumpectomy, chemo, another lumpectomy and then radiation. My ONC recommended that I do the Lupron/Letrozole combo for my hormonal treatment because the studies showed a slightly better outcome vs. taking Tamoxifen. I have had a challenging time at every stage of treatment - headaches, backaches, severe neuropathy (pins and needs, burning sensations in hands and feet and body) during chemo, development of axillary web syndrome/cording after second lumpectomy, neck pain and body aches during radiation plus excessive peeling after radiation. Made it through all those stages and am thankful that I was able to complete them. But now I am feeling possibly the worst that I have felt since I began and I think it is due to the Lupron and Letrozole. I have muscle aches and pains that are almost constant, my neck and shoulders are in permanent squeeze mode which leads to frequent throbbing headaches. I have only had 5 shots of Lupron (doing monthly) and just started Letrozole 11 days ago. I am also doing acupuncture, physical therapy, supplements, walking tons, eating right and doing all that I can to help my body get back to some normal I am hoping that this is simply a matter of my body adjusting to the medicines so I hold out hope each day that things will improve but it's been pretty rough. Planning to talk to my ONC this week to see how much longer I should continue with Lupron/Femara before saying it's time to make changes to the meds to see if a better response. Good luck to all of you ladies. We are stronger and wiser together.
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HapB, I agree that it is odd how differently all of us respond to different medications. I have pondered asking my MO to order this test:
It evaluates pharmacogenetics. It is by Mayo Clinic. It lets you know based on your genetics which drugs may work better for you, and which you may be more sensitive too. If I did not need a doctor to order it, I would for sure do it. I think it costs about $250 and is not covered by insurance. I want to know if that's the reason Tamoxifen failed me, but I suspect that my curiosity and worry may not be a medically necessary reason to order a test. Perhaps your doc could look into something like that for you since you have had such severe reactions. I hope you can find something that your body can tolerate.
On an unrelated note, has anyone taken Wellbutrin? I am about to be enrolled in a clinical trial investigating its use in dealing with the sexual side effects of breast cancer treatments. I have never taken it before, so I am a bit nervous, but I am willing to try something new if it'll help in that area of my life.
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KBee, I'm taking wellbutrin... been on it for several years. It is a great med for my depression and I've had minimal or no side effects... for whether it helps with the sexual side effects, I don't know. I do know out hasn't damaged my libido. Other things have... but now the wellbutrin.
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Hi there!
Does anybody using letrozole expereience dry cough? It is nearly 2 months that I'm coughing ( 9 months after starting letrozle) and I doubt if it can be the cause or not.
thank you!
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Fari, I have not heard of it causing a dry cough, but that's not to say they are not related. A cough that lasts that long should be investigated.
HapB, Glad you are feeling better! Some people are sensitive to various fillers, but it seems to be pretty individual. Teva seems to be a brand that has worked for many. Good lick
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KBee, I have no experience with Wellbutrin, but I'm hoping someone will weigh in. I hope it's helpful to you. When do you start?0
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I meet with the study coordinator next Monday and start then. I will not know if I got the drug or placebo until the 12 weeks is up
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Kbee - I have taken Wellbutrin for many, many years. I had also taken fluoxetine for a long time, and eventually weaned myself off it. I had side effects with the fluoxetine, but none at all with the Wellbutrin. It has really helped me.
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Thank you all for the comments. Very reassuring. Not sure if I'll get the drug or placebo, but always willing to do clinical trials to contribute to the knowledge base
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HAPB - I have several side effects, mostly not pleasant ones! I am following up with my onco today - the worst is the crontic constipation and muscle and bone aches.
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So, a new SE hit me this month after taking letrozole for 8 weeks- extreme thirst and ew! Chapped lips. I did a search and saw that Tarheel Michelle used a Biotene mouthwash. Any other recommendations? Tonight I woke w a hot flash and reached for my water; a stink bug had fallen in and I hadn't realized it until after I took a sip. Bleh!! I drink plenty of fluids during the day. But honestly the thirst is crushing me every night.0
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Diagnosed with a stress fracture in my foot with no injury to it. Have to wear a boot for six weeks! Yuck! I have been on Femara since May, am due for my second Prolia shot this month. I don't want to jump to the conclusion that it is the letrozole, but wonder. Hurting and grumpy!
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Falconer, get a water bottle to put on your nightstand instead of a glass. No bugs can crawl into the bottle. Also try drinking water as well as urinating before you go to bed. I usually wake up a lot anyway during the night; it's been like that since starting aromatase inhibitors (doesn't matter which one). I've had very dry mouth, particularly in mornings (I take Letrozole at night because of dizziness and nausea); my dentist recommended Biotene or any of the non alcoholic mouthwashes. Right now I'm using the Colgate version, it tastes better to me than Biotene. Also chew gum if you can, that not only helps with digestion if that was disturbed by chemo, but also generates saliva.
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6cats, similar thing happened to my left foot in late June; I was walking back to the house after taking out the garbage, in my running shoes, suddenly felt a sharp pain on the top of the foot. It lasted a couple months; was worse when I had to wear shoes during the day at work, it would be swollen at night when I came home. I started icing it twice a day, putting a small ice pack on top and wrapping a cotton bandanna around it to keep the ice tight on it while elevated. Eventually it healed. But around the same time I injured my right knee during normal exercise and I'm still dealing with that. Starting physical therapy next week. I read a few research articles that linked aromatase inhibitors to tendon and ligament problems which makes sense when joint pain is one of the leading SE's.
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I see my MO on Thursday and will tAlk about it. The foot doctor wants me to see an endocrinologist to see if I'm not absorbing vitamin D correctly.
Yes I do have osteoporosis, but I am taking calcium and vitamin d and along with the Prolia I hoped it would be enough
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I'm sorry to read about what everyone is experiencing on Femara! I was on it for two years - just stopped after mtg with my MO. I experienced hot flashes, major joint/muscle pain, anxiety, constipation, weight gain and the coup de grace - vision impairment. I took an anti-anxiety to deal with the hot flashes and the anxiety, I took Tylenol to deal with the joint/muscle paint and my dad's bran muffins to manage the constipation (he needs to market those, btw) but when my eyesight issues started, that was it. I started getting blurry vision in my right eye - like I had a gauze veil over my eye. The floaters in my eyes increased as well. I have been off Femara for 4 weeks now and all of the symptoms are lessening or gone - including my eyesight. (still the floaters but no gauzy look) My MO said I was weakly positive ER and to just quit.
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