FEMARA
Comments
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Here's the problem with keeping a journal of side effects when you're just starting out on an AI - how do you know how to rate the severity?
And how do you know that what you're experiencing are actually AI SEs and not some other, more common, innocuous pain or symptom you would have gotten anyway had you NOT been on an AI?
I tolerated Arimidex very well for the first six months. Then the joint pain snuck in... followed by a series of other SEs: trigger finger/thumb; lady parts pain, irritation, and bleeding; bladder pain and incontinence; high blood pressure; weight gain; and finally crushing depression.
I waited a full year before I went to my MO complaining of the SEs. She was very upset that I hadn't contacted her earlier.
But before I did that, I wanted to make sure that what I was going through was not due to some other organic process. I had blood work to rule out inflammation, UTIs, a pelvic exam to rule out infection, and everything else I could think of so that I could present a list to the MO of what was going on.
I really didn't need all that documentation for her... she assured me that she believed all of them came from the AI, and that I definitely needed a two-month break.
I created a log of SEs, and kept a weekly update to see how I fared without being on the drug at all.
But in the beginning, when I was first prescribe my AI, I would have listed my joint pain as a 9 or 10... when in reality it was more like a 2 or a 3, just because it was new. After a year, it was definitely a 10. I walked with a cane or a walker.
So yes, it's always good to keep track of new symptoms that you can discuss with your doc. Just keep in mind that we are all susceptible to different ailments that have nothing to do with AIs.
And when you do keep a log, try to use an objective scale rather than a subjective one. For pain, I used the old "scale of 1 - 10" .... I assigned those same values to the other symptoms I was having, and for the depression, I used a common depression quiz I found online.
I just logged in my actual blood pressure.
I used an Excel form, and by the end of 8 weeks, it was very obvious that in the first few weeks there wasn't much change, but the changes were dramatic the closer I got to 8 weeks off the drug. All the SEs disappeared.
These are the kinds of things the doctor wants to see.
SO, after this long, rambling post, I would encourage anyone starting out to keep track of new symptoms, but be cautious as to how you rate them. Try to be objective, and add notes if something is really out of the ordinary.
And don't forget to keep your PCP in the loop - there could be other causes for your SEs!
p.s. Switched to Femara after a year on Arimidex - so far, so good!!!
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To piggyback on Blessings post above - those of you who own or use a fitbit pedometer, I created a special log on line to record side effects, including a pain scale. This allowed me to see a correlation between activity amounts, daily activity, sleep logs, etc. Was a big help in sorting out all of my side effects.
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Blessings and BayouBabe, great advice! Thanks..
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Thank you for your replies Chrissyb and Lassie11! I have about a year more of Femara and am not loving what it is doing to my hair - the actual strands are becoming thin.. and possibly thinning out? argh.
Thanks again! : )
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Meshell, you will find that the lack of estrogen is also a lot to blame for the thinning hair and the fact that it looses structure so feels finer.
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dventi,
On Anastrozole I developed pretty severe tinnitus, hearing my pulse loudly in one ear. And seeing my pulse like a shadowy windshield wiper in my vision. Scans were done. Nothing found. I stopped Anastrozole after the four day migraine and after a month of none of this AI, the tinnitus AND the slight vertigo (impression of slight room wiggling) are almost imperceptible.
However, one month of Letrozole and my blood sugars doubled despite increasing insulin to compensate. Stopped that med and blood sugars have dropped almost back to my past norm after two weeks.
Next up? Aromasin. Geesh.
HollyBoo
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I started Femara about six weeks ago and feel like crap
Shortly after starting it, my joints and muscles started hurting. My hip, shoulders, neck and back constantly 'pop' when I'm moving and my back is constantly aching. I was used to having back pain but kept it under control with exercise. My oncologist took a closer look at my CT scan that I had for rads planning and told me that I have arthritis in my spine. The hot flashes have been most bothersome....I thought I'd get used to them by now (have had them on and off for a few years now but since I was diagnosed they have been constant (I used to take low dose estrogen as HRT before dx). I sweat all night and my body is either too cold or too hot. I saw my oncologist a couple weeks ago and he said that in a few years I'll feel better....really...in a few years? I was feeling so good this time last year and am really mourning my 'old' life
My family doctor gave me Vicodin and Percocet for the pain and Lunesta for sleep but I'm afraid of becoming addicted to these meds. A few days ago I started becoming nauseated late morning that will last until evening but I'm not sure if that's another SEReally need some encouraging words at this time to keep me going....i feel like such a wimp reading that a lot of you ladies have dealt with SEs for years.
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Bonski68 - I hear you! I have so many of the same side effects as you except for nausea. I sleep with a fan w/remote blowing right on me so it doesn't bother my DH however my not sleeping plus the fan has him sleeping in the guest room often. I am trying very hard not to let the SE's get the better of me especially because of all the "brave hearts" on this site. My BS said if SE's are too bad she will try something else but to stay on it for at least 6 mos then we will re-evaluate. Some of the ladies suggested changing the time you take your femara and that might help. Hope it does - Hugs, M
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Bonski, do you get any exercise? I would also be leery of taking percocet and vicodin for this. That seems a bit like overkill.
Another thing that can help is to cut back on refined starch and increase your veggies and fish. It is the dietary way of beating back inflammation.
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....wait...is this the same femara that women use, who are getting ready to do... intra uterine insemination/?? i just googled femara to read the insert, and noticed all the iui results.. anybody seen that! news to me.
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OMG! You are absolutely right, kathec - apparently letrozole blocks estradiol better than the traditional infertility drug Clomiphene. This sends the pituitary gland into overdrive, producing FSH (follicle stimulating hormone) which means that the ovaries will produce more eggs more quickly.
WHO KNEW?
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hollyboo - Wow, you ARE sensitive. "Migrainoid" symptoms are crazy and varied. I get both the pulsatile tinnitus AND the high-pitched EEEEEEEEE tinnitus, but I've had it for so long (pre-AIs), my brain tunes it out unless I think about it. Love the description of seeing your pulse "like a shadowy windshield wiper in your vision" - I've had that, too, long before Femara. But the blood sugar increase? ARGHH! Hope you find that your SEs are much less on Aromasin!
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Bonski68 - You are not a wimp!!! Dealing with any new SE can make us nuts. I, too, keep the overhead fan on at night, as well as my electric blanket (dual controls). In addition to spinal arthritis, spinal stenosis, and scoliosis, I now have something called anterolisthesis. Basically, a disk is tilted forward and pressing into my spine. I got a huge back brace last week that is helping me keep good posture. I just have to keep moving and exercising to make sure my muscles develop and are able to keep me in that position on my own.
My favorite exercise is the water aerobics in the therapy pool at the rehab hospital. The water is 94 degrees.... AHHHHHH!. As for the narcotics, I have everything I want, but I take them sparingly. If I find I am sleeping o.k. at night, I don't take them. But a few nights of insomnia due to pain, then you'd better believe I'll take those pills until I get the rest I need.
You also might look at your diet as Momine mentioned (I'm gluten-free), and the time you take your letrozole as Canuck mentioned. (I take mine at night to avoid fatigue.)
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Canuck46 - I have to say, it was at about the six-month mark that the anastrozole SEs hit me hard, and another six months before I was brave enough to ask to go off it. Now I've been on Femara for six months, and I'm starting to see more SEs, but I've also noticed that the weekly acupuncture is helping - not only the joint pain, but my overall feeling of well-being. I am determined to stick this out for at least another six months, then we'll re-negotiate if needed.
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Momine - I agree! In fact, both DH and I are now researching "anti-inflammatory diets" so that we can get any inflammation under control. We've made a lot of healthy changes in the past few years (gluten-free, low sugar, low fat, no red meat, etc.) but we could do more.
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Blessings, it surprised me with the anti-inflammatory foods. At first I thought it was BS, but it seemed to be legit, and I figured I had little to lose. Especially during taxotere chemo, I had horrible inflammation. My standard anti-inflammatory during those days was an open-face sandwich consisting of coarse whole wheat bread (I am not gluten free) with sardines, raw garlic and fresh chili. It worked better than ibuprofen.
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Momine - that sandwich sounds wonderful! I think it might keep the vampires away as well as the side effects.
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Lassie, lol, yeah, that too. Can't hurt
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Does anyone have flaky, itchy eyebrows on letrozole? I never did before and it's grossing me out. Been moisturizing them, but it doesn't seem to help. Anybody have a good remedy?
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Hi, LKSHER!
Suggestions.....get a facial scrub with exfoliating beads in it and use a small bath puff and give your forehead and eyebrows a good scrubbing. (If you need something non-drying or for sensitive skin, they have that.) Then follow up with a rich cream. I like Nivea "Soft". You can get it in the travel size at Walgreens if you don't want to use it elsewhere. About $1.00 for a travel size jar.
If that doesn't help, you should see a dermatologist just to make sure that you don't have something germy.
Good luck, MsP
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Thanks, Ms. P.
Exfoliating is a good idea. I can tell it's not germy. It's just little pieces of skin and it's mild. It's just annoying.
I do think it's the letrozole.
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LKSHER, yes I have itchy flaky eyebrows and forehead as well.........I use an exfoliant once a week and make sure I moisturize well......this seems to help a great deal and over time it has lessened. Hope you get the same response.
Love n hugs. Chrissy
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Bonski68.......I have been on L for just over two years now and the first year I suffered from nausea
very badly to the point that I lost a lot of weight. I would have to take a Gravol suppository in order to eat. The second year has been much better and I rarely have it anymore. Talked to my MO who said to just keep taking the Gravol when required.
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Thanks, Chrissy!!!
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Good morning and Happy Mother's Day!
I have not posted in a bit-but have been reading and dealing with SEs. Could have searched the thread-but too lazy. Am on femara for the 3rd try and about to give up on all of them. Weight gain, hellish bone and joint pain, depression (am on Effexor ER for the hot flashes), and the horrific waking up in a puddle calling for help nightmares. Have been trying the AIs with a Tamox in the middle try for a bit over a year. Quit taking anything for the pain-it doesn't work anyway. Hardly takes the edge off. Have lorazapam for the unexpected jags of emotion/crying.
The nightmares, though, have become progressivly worse. To the point of an almost fear of sleep. A friend found, and I I also did some research on the use of Minipress for nightmares. Use began for PTSD. I took the first tab last night. Still had a nightmare-but did not wake myself calling fo help in a pool of sweat. My question. Anyone else tried this? Or just tough out the SE and eventually the nightmares "vivid" dreams go away?
Thanks ladies.
~susan
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Susan,
I have nightmares all the time, ones when I call out/scream. I dread to think what the neighbours must be thinking! I think it is the anti-depressants in my case and my GP agreed. Some of the dreams are so vivid that it takes me a while to realise they are not true. This is especially horrid when they are frightening (but those are usually about my ex!) I am on Venlafaxine and Mirtapazine. Oh and Femara..
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i just passed my 1/2 way (2.5 year) mark. I had some relief from side effects at the 2 year mark when I retired and could sleep more. However, they've come roaring back recently. I'm restarting acupuncture next week in hopes that it will help. I eat gluten free, but I need to do more of the anti-inflammatory diet. On occasion I think of how good I felt and how much energy I had right before I was diagnosed and just get PO'd. The cancer didn't take my energy and give me pain. The ef'n CURE did. How messed up is that?
Then, of course reality raises it's head and I realize I'd be well on the way to being dead if it wasn't for all the stuff that was done and the medicine we all hate. I realize the side effects are well worth being able to spend More time with my husband and hopefully see my grandchildren grow up. Its important to keep that stuff in perspective.
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Thanks ladies. WSocks. I have been on Effexor ER much longer than the nightmares. Started it almost as soon as chemo as my MO said would help with night sweats of the AIs and he wanted it well on board and he titrated the dose slowly. Have had only one about the @$## ex-husband from hell. And he was in one of the true hellish ones-that included smells and feels.
GG. True. The meds caused all the crap not the cancer. I felt great prior to DX. Really good. Lots and lots of energy. Maybe that is why the mass was able to grow from nothing to 6x6 in 15 days.
My first grandchild was born in April. My youngest starts law school in August. I need and want to continue my professional life. But I feel like crap and worse each and every single day. My MO, PCP, RO, all say I should not feel this way. Am almost @ my 2 year mark and should feel better. Should being the defining word. As if I am making this up. I still have times I see black and drop to my knees due to low BP because of the cardiac drugs am on because of the low EF from Herceptin. The cardiologist keeps lowering the doses but my BP stays low as does EF. Go figure. I was used as a standardized patient in the health science center as a pale woman with low BP, high pulse, low ox saturation levels, and a chronic productive cough with clear lungs BECAUSE that is who I am! There was no need to add any information to the simulation.
There. I have vented. My MO and I plugged my numbers into the magic number producer with an AI or Tamox and without. Going to do it again the end of May @ my next appointment and discuss quality of life issues.
Thanks for the therapy session.
Love to each.
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susanhg123, scuse the punctuation, or lack thereof! i always enjoy your rants, and am always glad to see your posts. I have been having truly extraordinary nightmares and dreams since starting the femara too. and i dont take antidepressants, but i am on painkillers and neurontin. the extra pains of femara i am trying to wait and get through, but just the regular ones i have had since surgury are. still. there. i am sure they all think i am crazy, and cant figure out why i am hurting, or so they say... but i am so tired of it, and tired of pills, too. i can see on stage four threads, that some women are being treated with ai's, and it is almost like i am willing to stop them, and use them when and if i progress to stage 4. i have been trying to organize all tx papers, and i see that on my very first pet/ct scan before tx, that i had lung nodules and right renal uptake. and from what i could see, lying there, till i couldnt see anymore, was my ankles and pelvic floor lit up like downtown at night. but, unlike lots of othere here on bco, i dindt get any scans after treatment.... and i am just wondering if those are gone, but no-one seems interested in finding out. i am concerned right now, cause i think my lungs are filled with crap, and i keep having these weird rashes on my legs. i never had anything before, and never saw drs. and i was full of energy, and also felt great. its like, i want to want to do things, but just go...meh.... but, i was on a two month break, before femara, and i had just been wonderfully energetic again, and was just starting to get enthusiasm and joy back again, and accomplishing things and projects, and now, i have also been having niggling thoughts like, its better to be dead, or, i could just take all my pills and get it over with. this is from outside of me, i know, and possibly a side effect from the femara, but i really dont want yet another pill. i just want to be taken seriously, and take a look inside.now, tears are rolling down my face, and i get angry with my docs, and i really don't want to "talk" to one of their therapists, cause i really feel like they dont know me, and really just don't care, after all, and wish i would just go away, and make room for more pliable ca patients. i am angry. and, i just had mri of breast, and there is architectural distortion, which my last mammo never mentioned, about 4 months ago. and when i lie on my back, i can see a bump just under the lower edge of my lump scar that stands out further than the scar. this was there before the mri, but seems bigger in the last three weeks, but is squishy. grrrrrrreffingrrrreat. but, breast surgeon did not seem concerned,when i saw her after mri.
you and i were dxed at same time. and i wanted to keep my breasts, for him. he always loved them, but, we hardly ever get naked together, and i am just starting to wonder, if i shoulld just go ahed and cut off the lumpy bastards.
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Hi Ladies, I take my first pill tomorrow (Letrazole). I'm really scared of the side effects but after much struggling with the decision I've decided to just do it. I'll be visiting here often to get your advice.
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Wynne50 , welcome. We're here for you. Just take it step by step.
MsP
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Hi Kathc. Want to come over for coffee? Sounds as if we have a bit in common! LA proper? I finished HS @ Rolling Hills HS. The name has been changed-but cannot remember to what. Chemo brain I guess.
Ask your PCP or someone for a Rx for Minipress 1mg for bedtime. The dose can be increased to 13 mg if needed. I have taken the past 3 nights. The dreams nights 1 & 2 were not horrific waking myself up crying for help in a puddle-but not butterflys and flowers. Last night-I do NOT even remember a dream. Yup! Night 3 was clear as a bell! I am pumped-and not as tired today.
But, that does not address the pain in my joints and muscles that continues and worsens. Some days it is an 8 but never below a 4. Odd places-the muscles in the forearm of my left arm is newest. Headache that started left side is now across the top additionally. Had a MRI of my brain after about 3 months. Nothing. I decided it was dehydration from nausea and increased fluids. Did not decrease.
Go see your MO. Or if you do not feel you are getting the answers you or the care you deserve request a 2nd opinion. Request scans/MRIs/labs. Talk about BMX. I had both but @ separate times and no reconstruction as BS and PS would not approve.
Go see a therapist. Really. Interview several and find one you like and can work with. And go back.
PM me.
Sending virtual hugs. And a bit of scotch
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Welcome, Wynne50! Glad you made it over here!
Well, I've been on letrozole (Femara) for seven months now! After a year on anastrozole (Arimidex), I got a two month break, and then started up letrozole last October 2013. I do seem to remember I did o.k. on the anastrozole the first six months.
So I'm still cautiously optimistic. Most of the nasty SEs I had with anastrozole are still gone, but I am a bit stiffer and have more joint pain, especially in my back. Having anterolisthesis does not help - I have a disk that is pressing into my spine at L3-L4. Hard to blame that on a drug. (Now I have a big honkin' back brace to wear...)
So I still go to water aerobics in the therapy pool, ride my adult trike with DH, and go for regular acupuncture treatments. If I find that the few SEs I have now get worse by the one-year mark, I may ask for another two-month drug holiday, then go right back on letrozole. It really has been so much better for me than anastrozole.
Hang in there, ladies! And if you really are miserable, then PLEASE contact your MO for alternatives!
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Hi all,
Haven't been on this thread for a while. I was really glad to read about the flakey skin thing. Mine is between my eyebrows. I get dermatitis from time to time, but it usually goes away. This is staying and I'm thinking it may be the Femera.
After 15 months on Femera, the hot flashes are greatly reduced. It seemed to happen suddenly; was having several a day and then suddenly realised one day that I hadn't had any for about 2 days!
I have some bone pain (mostly my back) but just got switched to Nuproxen from ibupropen and it's helped a lot.
And, it's kept my cancer inactive, so the hot flashes and bone pain are worth it.
Terre
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