FEMARA
Comments
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Under letrozole website:
Rare side effects
This side effects happens in fewer than 1 in 100 people (fewer than 1%). You might have one or more of them. They include:
a drop in white blood cells
anxiety, feeling nervous and irritable
feeling sleepy
not being able to get to sleep
not able to remember
damage to the nerves causing tingling, prickling or numbness
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Lilly. Thank you for the info. To Have these low wbc and rbc from Letrozole than from more dangerous things is better. But what we can expect if it continues to drop? I am trying to think positive but it is hard in particular i am diagnosed with osteoporosis and on a pill to fight it.
I will hope for all of us the blood cell count comes to normal
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Margun - Last April my WBC count was 3.9 and considered low (better than it had been though), the red was 4.12 and considered OK. By August things were much better and the WBC was 4.7 (normal) and RBC 4.24 (normal). That was as good as they had been in a long time, and I have to say, I had been experiencing less fatigue and lightheadedness and continue to do so. Those numbers stayed low ever since chemo, and only recently have they improved at all.
You might also look into the possibility of electrolyte imbalance. Along with the low blood counts, I had been having continual problems with low potassium and sodium (esp potassium). Electrolyte problems can also cause fatigue, weakness, and lightheadedness. Those levels too were improved as of last August. I've been hovering with low normal and high abnormal numbers for all of this stuff, but the potassium has been the biggest problem. I was even slightly anemic at one point which is a "never happened before" for me. To the contrary, I'm usually real good in that dept. with a high HCT number.
I started eating a lot of food that contains potassium (coconut water every day, more bananas, potatoes, and acorn squash), along with adding smoked clams once a week for more iron, and I have been better on all fronts with the blood work. Also, a lot more salmon and sardines with bones, primarily for osteoporosis and the AI, but can't help wondering if the fish too, isn't helping with more than just that, since my numbers have all improved.
All of that aside, the Letrozole side effect list says it can cause lightheadedness. The problem is that they never say why, so you have no way to try and make things better. Does it throw off your electrolytes? Does it lower WBC and RBC counts? Is it something it does to your brain? They list these side effects, but they never say just what causes them and it drives me crazy. I don't want to just hear "see your doctor" for all these things.
My prescription bottle of Letrozole says it can cause lightheadedness or dizziness (can't remember the exact word on the bottle), so it is a problem associated with the drug, but why?
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ThreeTree- thank you for your advise in regards of the food with iron and potassium. I ate meand liver for iron and never heard about smoked clams. I Will definitely try.
I was not that worry about lightheadness because it is mentioned as a side effect on the bottle. The low wbc made me anxious because was lower than before and out of normal range. But as Lilly sent me a list of rare se of Letrozole we are 1 in hundred that has this wbc fluctuation. I will wait until next week to see what my MO says.
You are right, it is crazy that there is no explanation what is causing se,in particular wbc drops which created panic in my head, and we must wait until doc appointment to see what is going on.
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Margun - I think I have just about every side effect on Lilly's list, except for not being able to fall asleep. There are a lot of us in the 1% group, and just because the statistic is low, they tend to dismiss this stuff - never mind there could be thousands of us.
I don't ever see liver in the stores anymore, so I resigned myself to clams, which are also a very good iron source, and I happen to like them.
I don't know why the WBC thing happens - it could be leftover from chemo. I've read on these boards where some have said their white cells never came back up to normal after chemo, but that they felt OK, and their doctors told them not to worry about it. Again though, they just never tell us why this stuff happens (I'm not sure that the dr's even know), so it causes a lot of anxiety and worry. I'd be up at the urgent care 2 or 3 times a week if every time I got one of these symptoms, all I could do was "talk to your doctor". I just let most of it go anymore and just chalk it up to some sort of side effect from the old chemo or the current AI; otherwise I'd be a basket case and visiting the doctor every other day.
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threeTree- I couldn’t find snaked clams instead clams canned in salty water. We’re you referring those in salted water? If yes, you can eat it as is or I have to cook them? The good thing on the can can is written 90percent iron, I guesse 90 percent of daily intake of recommended iron.
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Margun - Glad you found some clams at least. I don't think it matters if they are smoked or in water - whatever your taste preference is will do, as clams just have a pretty good amount of iron in them.
I'm sorry I don't have an answer about whether canned clams are cooked or not already in the can. I have actually wondered the same thing myself and couldn't see on the can where they say they are. I'm talking about the ones in water that you mentioned, the smoked ones have been smoked, so "cooked" in some sense. If anybody else here knows if canned clams in water have been previously cooked please chime in! I would think that just the canning process alone would require that they be cooked, but I'm not sure.
You say you saw 90% of daily value for iron on the can. That's the most I've seen so far in any one container.
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Hi. I have been on Letrozole for about two months ( was on Tamoxifen before). My liver enzymes are trending up on labs, with ALT not too abnormally high but flagged as abnormal ( 39 with lab range cutoff at 32). All other labs normal. I have been having digestive issues (feeling full sooner, loss of appetite but not losing weight yet, upper abdominal discomfort intermittently, and dyspepsia) for a while and thought it was the Letrozole. Now results of US of liver does not show mass or lesions, but shows increase in size ( hepatomegaly). I have stopped Letrozole as I'm not on any of the drugs that are listed to cause this. I have gained 5-6 lbs, but am at normal weight and BMI. No alcohol. Anyone been down this road? Stage 2A triple positive 2 years ago. Six rounds of TCHP with continued HP for a year. DMX. NED, so far
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Hi all. I haven't posted in quite a while. I had a lumpectomy on January 12 2021. It was only 5 cm (God bless my doc that she even found it) er+, pr+ and her2-. The docs decided that I needed a month of radiation, so the whole month of March had me going 5 days a week. I had started on Letrozole the end of January. So by March,with the combination of SE's and the radiation, I was an emotional wreck. My PCP prescribed Xanax and Sertraline aka Zoloft.
I retired in September and, thank God, we moved to South Florida. I love it here but had to go through meeting new doctors and getting new screenings. I've had chronic pain (+fibromyalgia) for close to 40 years and have been taking Tramadol, Flexeril, and Diclofenac (an anti-inflammatory)for at least 15 of those years. The pain in my bones, joints and muscles is getting so much worse that my new Pain Management specialist ordered Mri's of my lumbar and cervical spine. I wanted to start weaning off of the Tramadol as it's an opioid but my spine is a mess!! I've got degenerative discs, "slipped" discs, spinal cord impingement, arthritis, and bone spurring, just to name a few problems.Anyway, I really can't tell if my increased pain is from the Letrozole or the increased deterioration of my spine.
I also have osteopenea for which I get an injection of Prolia once every 6 months. And some Prolia side effects are back pain, muscle pain, constipation,pain in your arms and legs!!
It really sucks that with Letrozole, I get increased pain and bone loss so I need Prolia, which causes more pain so I need medication for that!! It's like I'm on a merry-go-round.
I have to wait 5 more days to get back to water aerobics (I had cataract surgery and I can't let the water get in my eyes for a month). Praise the Lord, I can see without glasses for the first time in 67 years. It's like a miracle!!! Next Thursday will be 4 weeks. Thank you for letting me share my frustration with you guys. I totally appreciate it.
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2012 DCIS Stage 0, ER+/PR+ , HER2-, Aromasin/ mammosite radiation therap
I stayed on Aromasin for almost 3 years, could not stand the joint pain, and stopped.
Nov 2021 IDC/DCIS Stage 1, Bilateral Mastectomy with reconstruction, ER+ (>90%)), PR+ (>80%), HER2-
Letrazole
So, yes, at 10 years cancer free, I have had a recurrence
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prm, sorry to hear that dang (read any swear word u like) came back!
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hi. I am on Letrozole for 2.5 years. Beside joint bone pain I was diagnosed with osteoporosis. Now I am taking risedronate to fight it. I had some periodic constipation from Letrozole and calcium but after resedronate it became chronic. Do you have such se and what you do to solve it without resorting to laxatives every 2-3 days. I am pretty saturated from prune juice and prints and even those sometimes are not effective.
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Well,
I wasn't having many issues on Letrozole other than night sweats and joint pain in the beginning. The joint pain subsided after a couple of weeks.
I went to my PCP for an upset stomach, nausea, weight loss, loss of appetite, abdominal pain, fatigue, decreased vision. He marked me down for Anorexia and abdominal pain and referred me to a GI. I had an ultrasound done to check the gallbladder—all good. The next step from GI is an endoscopy. I sent the lists of symptoms last week to my MO to keep her in the loop.
I decided to look up SEs and studies on Letrozole since it is the only thing that has changed in the last couple of months. I sent the studies and symptoms to a Pharmacist I know. The Pharmacist confirmed all symptoms can be SEs of Letrozole. Well, go figure that the symptoms can be SEs of Letrozole and no doctors on my Louisiana Team have yet to bring it up after confirming I am taking Letrozole. Sheesh…
Patient care, cancer, and being your best advocate go hand in hand down here. Honestly, it should not be this way.
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wondering44, I was on Letrozole but have been changed to Anastrozole. I had right upper quadrant pain in my abdomen while on Letrozole. (besides the joint pain etc.) My vision has been blurry, seeing eye dr this week. The joint pain has been less on the Anastrozole. I was taking Prozac for a couple of months and dr seemed to think that was causing the blurred vision. I'm no longer taking that and I think my vision is a little better. The 1st SE under Anastrozole listed is blurred vision! No one seems interested in listening to me aboutthis. UGH!
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kidi1919,
Sorry for the late response. I hear you. :-) Keep pushing. I'm not too fond of the idea of the doctors adding more meds to combat the SEs. I understand it is the medical route, and those are the options we have in front of us to utilize. I would prefer the right explanation rather than an extra pill. That is my preference. I do not disagree with others' choices.
I have found the best answer for SEs to the AIs from a pharmacist. You may want to approach your pharmacist to get more info. to hand off to your MO. I am no longer on Letrozole since 04/06/2022. My local MO wanted me to switch to Tamoxifen ASAP, but I put a "pause" on any recommendations until I get additional information from a second opinion out of state. Two weeks in the "cancer world" is a short time wait.
I did add collagen to bone broth daily, which may have helped with the joint pain I had at the start of the Letrozole. It did help my fingernails and toenails to stop constantly breaking after I started taking the AI. I still have upper right abdominal pain, but it has been a short time since I stopped taking the Letrozole. I will post again on AIs if I get more information. I think the second opinion will have a wealth of info. to provide to me to help me make the right decisions moving forward.
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wondering44, I have had less joint pain on anastrozole. My vision has cleared up since d/c the Prozac. I haven't had the right upper abd pain since getting off the letrozole. Your suggestion of talking to a pharmacist is a good one. I don't think a 2 week break from an AI is a big deal. I wonder if the dr's think that if you take a break, you won't go back on something. Best of luck.
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I feel like Nanna asking the same question of when the SE effects kick in. I have fought going on these but agreed to give them a try. I just started Letrozole today and will see how this goes. I am a pessamist about being on these toxic drugs with so , so many SE and if I cannot tolerate them I will stop. I already have some major arthritis issues in knees and shoulders and cannot imagine more pain. I am older and early stage breast cancer but HER2+. Did chemo, radiation and herceptin. Now these drugs.
Living alone with dogs and a house and property to maintain is paramount to me. Plus I need a second knee replacement and have to be feeling in shape to head into that. Has anyone had a joint replacement while on these AI drugs? If so, did you stop for the surgery?
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Racheldog, I have had several surgeries since starting on AIs. They did tell me to stop. And I didn’t start again Til Ifelt ready. I have too many side effects and DIEP was major surgery.
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jrnj: Thanks for answering. I plan on stopping prior to knee TKR. That is a major surgery with rehab and if I am not feeling well from AI's there is no way I want to head into PT, etc. I would do the same and not go back on again until I feel ready either.
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Was your knee replacement successful? Do you still have knee pain when taking Femara afterward?
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yes after taking Letrozole for 4 years , I am in pain every day, burning pain in my legs from the knee to the foot. On Mobic and Tylenol and it doesn't help. I have read a couple of posts that said they had knee replacements and still have pain due to Letrozole. I am feeling so hopeless. Would like to hear from those that have had knee replacements during treatment with AI's about your outcome.
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llthomp2 when I stopped letrozole for 6 weeks, my knee pain was gone. Can you ask your MO if you can take a break and see if knee pain improves? What stage are you and what type of BC did you have?
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I have not had the knee replacement yet. I had a right knee replacement before being diagnosed with breast cancer. It was a breeze, great surgeon and rehab. I only wish I had done the other one a year later. Because I waited the breast cancer diagnosis came next. I worry about these aromatase inhibitors causing bone loss and causing any implant to loosen or not be as successful. I do plan on stopping the AI about 3 weeks before surgery this summer.
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stage 1 and Estrogen receptor positive.. I had a lumpectomy and 19 high dose radiation treatments. I had no idea that would be the easy part and the real hell would be the Letrozole for 5-10 years.
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Yes, lumpectomy, stage 1, chemo, herceptin and radiation and Letrozole is the worst so far. I stopped this week for a couple doses while I got my booster and to see if my head fog clears up. There are articles about this and "need more studies" so I assume others are having issues with this. I would like to see real studies on those who elected never to take AI drug and the stats on recurrences in those women by grade, path, etc. But then, that might keep women from taking them and big Pharma would not fund research on this.
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What side effects are you having after years of letrozole? I have been on it daily for 3 months. That said, we all will possible different reactions with some the same. I did have surgery on Feb 9 and a blood clot was diagnosed April 8th. I think that will need to be gone and Eloquis done before i know what is causing what. I appreciate all of you posting. It is something to take to my MO. I have BRCA2, so contact with my MO is only in my first year. I tend to downplay what i am feeling, so your posts give me info that just may help. Thank you
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Katg, what surgery did you have that you had a blood clot after? There is no way, if and when I am scheduled to get this second knee replacement in August, that I will stay on the AI. Tamoxifen is known to have more blood clotting disorders. Knee replacements or any joint replacements are known to be worrisome for clots. I did fine with the protocol prevention for the first knee. Plus I want to be at my best for the knee rehab that will follow.
I skipped two Letrozole doses this week because 1) I was getting the 2nd booster and did not want to risk feeling crappy from both and 2) I have a big family funeral to attend this week and I do not want to have brain fog or hobble into the church. As it turned out I got chills and fever for a day after this Moderna booster. So I am glad I did not take the Letrozole that day.
Amazing that in 72 hours after my missed doses my brain fog and cognition is back to myself and the back and hip pain and tightness I was feeling when walking is gone. I am not making this up for the sake of this site . Proves to me that Letrozole was causative for both. This drug is going to be a hard sell to me. I know I might run the risk of recurrance but what is the flip side of this? Pain, muscle pain, feeling lousy and horrible cognition from Letrozole. For five years???
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I just found this blog because I have been on Letrozole for 2.5 years now and I am feeling terrible. I have trouble sleeping, my joints hurt, hot flushes, and I am exhausted most of the time. Even taking a shower exhausts me. I have to sit and rest after doing most household chores. I went to my doctor finally and told him how exhausted I was all the time. I had chemo, Herceptin, and radiation. Started Letrozole after radiation. After a few weeks is when it kicked in. I thought it was just from the treatments. I saw numerous doctors to figure out why my hands and arms were numb. Each of them had a different diagnosis. The last one I saw was a Neurologist, who diagnosed me with Chemo Induced Peripheral Neuropathy. My doctor prescribed meds, he thought would help the nerve pain, Both drugs SE we're almost if not worst, than the Letrozole, affecting my badder functions. When my onco put me on Letrozole, at no time did she warm me about the side effects. I didn't say to much to my doctor about how I was feeling for one I thought it was just the result of having chemo right, that's what the Neurologist told me and he should know right!!! I live in a small community and although we have a good compliment of doctors at no time has he thought it might be the Letrozole. He was concerned when I told him how weak and breathless I was and now I am waiting for an appointment with Cardiologist, but because I live in Canada and Covid that will be a pretty long wait.
I had a feeling that it might be the Letrozole so I was thinking about going off it for a couple of weeks and see if it might be that. As I was doing my research I came across this community group and I decided I would join. I can't tell you how happy I am to finally have a diagnosis for what I have been going through. I thought, and maybe my doctor did to, that I was crazy. Every single one of you have described everything I have been going through. I am going to try some of your suggestions to help with the pain, but just knowing what is causing all this as been such a relief to me. I am so thankful for that. I think I might have even slept a little better last night
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Glad you found us all, LindaK09. Yep, what you describe sure sounds like it could be from the Letrozole. It is no fun, but none of the alternatives look like they are either.
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Thank you threetree,I am too. Have you triTumeric or know of someone who has and what kind of success did they have?
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