FEMARA
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thamks for the luvena tip, enjoyeverymoment. I have been having urgency/frequency issues since I April w 2016, 4 months after starting letrozole. I will try it.
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Thanks for the info on Luvena, I haven't heard of that. My Onc has been okay with using vaginal estrogen but sadly, even that has not been enough to prevent some continuing vaginal atrophy because of the overwhelming estrogen deprivation. My gyn says it should get somewhat better when I get off Letrozole next year.
Does anyone on this thread deal with insomnia of any kind, whether it's difficulty falling or staying asleep (mine is usually the latter - I fall asleep but start waking as soon as an hour or two later and sometimes just cat nap through the night. I don't think I've slept through the night without waking in the 5 years I've been taking aromatase inhibitors. It's not as bad with Letrozole as it was with Anastrazole - that was awful, I was waking 6-10 times a night with severe hot flashes. But even with Letrozole I wake at least a few times a night, sometimes with hot flashes, sometimes not. I believe a lot of my memory problems now are from the cumulative effects of sleep deprivation. I use OTC stuff like 1 or 2mg melatonin because I don't tolerate Ambien well - leaves me with a drug hangover and I need to get up early during the week for work. If anyone has any suggestions, I'm all ears. Thanks.
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All I need to take for sleep is a Benadryl, sometimes 2.
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I began Femara (Letrozole) in May 2011 and, after discussing the pros and cons with my MO, chose to remain on it after my 5 years were up. I have had sporadic insomnia issues throughout this time, sometimes not being able to fall asleep when I first go to bed and other times waking after 3-4 hours and not being able to get back to sleep. Both Melatonin and ambien gave me headaches. Benadryl made me hyper. Chamomile tea, physical exercise, drinking a glass of milk before bedtime: none of them worked for me. Finally, my doctor prescribed .5mg dosage of Ativan (Lorazepam). This relaxes me enough so I usually fall asleep within half an hour. If I wake up to use the bathroom, I return to sleep right away. I'm an early riser and I don't experience any negative after effects the next day. Although I limit myself to only taking take one, once a week, because it's addictive, I've found that I seem to have no problem going to sleep the next night or two.
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I've been on Accord femara with minimal side effects. Today the pharmacy gave me the Teva brand. Hoping no problems!
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Hello friends - posting this to both Arimidex and Femara groups as I read about SE's on both.
Information posted by Lisey on another forum - it may help those of us who are having/have had severe SE with AI's:
Genetic testing for medication tolerance. https://www.kailosgenetics.com/pgxcomplete
Cutting edge testing. Lisey is a big proponent. I plan on checking it out since I experienced debilitating SE's from AI's - Arimidex and Letrozole - poison to me - name brand and generics.
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Kailos’ site doesn’t mention any AIs, just chemo drugs and the SERM Tamoxifen. Also doesn’t mention Bupropion (an SNRI antidepressant), PPIs, or valsartan (though it does mention other ARB antihypertensives)
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Yes, I was disappointed with their options. I take several medications, and only one was listed. However, it may be a lifesaver for some folks!
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I've learned this type of testing is called "Pharmacogenetic Testing."
I've been doing some additional research and found an interesting article on the gene sequence CYP1A2:
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2284-3
Also, I found a genetic testing company that screens for this genetic pathway - not sure I am describing this correctly, but there are results offered for CYP1A2 - which also pertains to other cancer drugs:
http://genelex.com/patients/conditions/cancer/
Additionally, I found a genetic testing company that examines metabolic pathways for anti-depressants and includes Welbutrin (Bupropion):
https://genesight.com/product/
These companies appear to conduct tests for several genetic metabolic pathways:
http://www.iversongenetics.com/DME.patient.final.pdf
Do a Google search for "pharmacogenetic testing labs" and all kinds of labs will come up.
I am very encouraged by these medical developments and will keep looking into options. I have a doctor's appointment next week and hope to get her to prescribe one of these tests to help me with answers to the ongoing SE's. I hope this information is helpful to others.
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Just found this list of biomarkers and drugs that have no clinical guidelines - this may be of interest to you as well - you'll note that both anastrozole and letrozole are on this list:
http://rxpgx.com/resources/pharmacist-resources-2/fda-pgx-drug-labels
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Hi all. I have been on Femara & Lupron for 3-4 months now. (tamoxifen & Lupron before that for 2 months) My doctor prescribed Cymbalta to deal with the bone pain and it has been very helpful. My pain is gone but I now have insomnia and constipation. It was a pretty fair trade I thought. So for insomnia I try different things on different nights. I just recently switched to taking all my meds at night. That has helped a bit. I also drink some magnesium to relax muscles - Calm brand. I have some valerian root extract, lavender oil, 500 mg sublingual melatonin. I also listen to the Calm app and try to stay off electronics or exciting books before bed. That is a good night if I can fall asleep. If I have pain then I take one nighttime advil and if no pain half of an ambien. (hot baths help too, all the same things we do to get our babies to sleep - minus the drugs!!)
One other thing to note with my pain - my diet and exercise contribute to minimizing the pain. I eat mostly plant based foods with small portions of protein (fish/chicken/nuts). When I add dairy or gluten I can feel it later and it isn't worth it to me. I also try to get exercise every day and often if I get up and take a short walk I can relieve a lot of my pain. It is counter intuitive. I am also 45 and was very fit at my diagnosis so exercise has been pretty easy for me to keep up with although my intensity if much less than before. I just try to move and I feel better.
Other side effects - ridged & peeling nails (I take biotin and keep them cut short), loss of hair, and dry eyes (lubricating drops before my contacts).
Lastly - I am very PR/ER receptive so my doctor is doing neo adjuvant therapy on me before surgery. My ILC ump was 4 cm when we started and is now 1.5 cm. This shows me that the AI therapy is very powerful and is working well - for me. Everyone is different.
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I'm counting down the days until my new insurance kicks in and I can see my doctors. I pretty much took myself off of Femera for a few months because the pain was unmanageable. I started back this week and the pain is back with a vengeance.
I am at the mercy of things beyond my control.
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tanganschris - sorry you are having pain. Did you consider switching to a different AI? I was on Femara for one year with typical SEs. Had a significant hair shed so doc took me off for 2 weeks then I started Aromasin. Hair is bleh and SE are similar but a bit reduced in severity. Definately fewer hot flashes. Worth a try
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Double-blind, Randomized Trial of Alternative Letrozole Dosing Regimens in Postmenopausal Women with Increased Breast Cancer Risk
http://cancerpreventionresearch.aacrjournals.org/content/9/2/142.long
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Marijen, that study would be so much more exciting if the study arms had a lower side effect profile.
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I assumed less letrozole less side effects, but you're probably right.
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Yeah, the way I read it, the effectiveness at blocking estrogen was the same at the lower dosing than the standard, but the SEs remained the same. Ugh!
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On another note,I don't think my MO believes that different fillers affect us differently.
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Margo- I was having same issues on Letrozole. I am 1.5 years in, and it seems to be lightening up. Still wake up wit hot pins and needles, but not every night anymore. Overall, feeling pretty good. Hope it gets better for you too.
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Hi ladies. I haven't been on this site for quite some time. I guess I have been coasting along and tolerating the bad days and s e and enjoying the good days. My reason for posting today is an increasing frequency of feeling lightheaded and heat intolerance. I have been working in my garden for the first time in 2 years because I am finally done with surgery, chemo, and reconstruction. Whew.
I have been on Femara, Aromasin, armidex and back to Femara. I had horrible joint pains when starting these, switched to another, then another and the pain in my thumbs just got worse. So I decided to give up the final one that was costing overm$100.00 a month and went back on generic Femara. I figured if they all had the same side effects I could at least save money.
I had (to me) a miraculous change when I started on a new diet to lose weight for reconstruction. I started a diet similar to KetoDiet/high fat low carb etc. I don't know if I am sensitive to gluten or if it was the elimination of carbs, sugar etc. that goes along with the change but over the course of a couple of weeks my thumbs quit hurting! I still get some joint pains but with mild exercise on a daily basis that seems better also.
So my latest "thing" is dizziness and heat intolerance. Today I decided to take my blood pressure when I was feeling so bad. It was 86/60 then dropped to 76/63. Well that could explain the dizziness. Looked up side effect of Femara and sure enough it was in there along with a lot of other things that I have been through in the last 2 years like UTI's and dental problems.
We are a tough bunch to put up with this!
Hang in there ladies. It is a wild ride!
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If you are experiencing dizziness, you should see your doc. It may or may not be Femara and you need to find out that it's not from anything else.
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Cellolady, I noticed the same thing when I went off gluten. My knee pain went from 8 to 2. Mind you, I had knee pain before letrozole, but it definitely ramped up after starting. Went gluten free and I am back to running up and down stairs.
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i have been on femara for 1.5 years now, and in the last month have noticed not waking up in the night with hot pins and needles. Hoping the trend continues. Just wanted to say that perhaps after body gets used to the interloper, se may diminish. Hugs to all
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I had dizziness that escalated to vertigo over several months. I was sent to an ENT who ruled out sinus or inner ear so I was taken off letrozole for a month & all symptoms subsided. Because I had difficulty with anastrazole I resumed taking Letrozole but at night. Only minor dizziness since switched to night time. See your doctor - you may have something else going on with the low bp.
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Here's a bit of interesting information in regards to knee joint pain
Don't get corticosteroid injections without discussing the side effects first
Corticosteroid injections can relieve inflammation, but they should be limited to three to four times a year at most. Injections can affect multiple organ systems and cause osteonecrosis, the death of bone tissue.
According to the Mayo Clinic (resource no longer available at www.mayoclinic.org), some doctors are also concerned that injections could weaken the protective cartilage around the knee joint. Patients should always talk to their doctor about side effects before receiving these injections.
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Bosumblues, I know it's the Femara because that is the only tx I am getting. No chemo and no radiation. So far I am doing well. Very few SEs, and my activities have not been affected. Hope you are doing well
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Stellamaris what companyis the manufacturer of your letrozole?
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cellolady26… - I am on Femara and have similar dizziness and also heat intolerance. I live in Houston and today is 109 with the heat index so I may be inside most of the day. It is miserable. I also have quit gluten as others have noted and it has helped immeasurably. I also quit dairy and that has helped with join pain as well.
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Have any of you ladies ever double dosed your femar? If so, what side effects didyou experience? Thanks...trying to do a sanity check.
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I have a system, I put the bottle out so I don't forget, then I put it away after I take it. That way I know it's taken once
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I have a little pill minder right next to my coffee pot. Can't start my day without my latte so never miss my pill either. And on the plus side I always know what day of the week it is
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