FEMARA
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Thanks ladies!
Ms Pharoah, I'll check into the YouTube workouts you recommend.
Moline, I agree, I shouldn't have to take Percocet. The pain on Femera was that bad and now that I'm no longer on it and feeling much better, I tried to stop it and started having withdraw symptoms so I'm weaning myself off of it.
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Bonski, ok, i get it. I thought you still had the pain in your leg.
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Thanks Ladies! about your input on your experiences of riding the waves with Femara. Hugs to all!
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I am back and catching up. Thanks for all the info. I haven't had SE until recently and wonder if the pharmacy changed the distributor for my letrozole. I take my pill at night with Omegas and that has worked for the past 7 months. I am now having issues with my lower back and legs.
I am going to call the pharmacy and inquire about my previous RX and current.
Again, thanks for the info.
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Good evening friends,
Just got home from a day in Lincoln. Had an appointment with my MO this morning.
For the past several months, I have had a terrible time in both hands with trigger finger/thumbs, he suggested I not take the Letrozole for 2 weeks and see if there is any improvement or not. If it is a big improvement he said we could try a different supplier (He said there are 3 sources for it) so that is what I am going to do. I told him I can handle the thinning hair, facial hair (enough on upper lip and chin to make a 13-14 year old boy jealous)LOL. the achy elbow and knees but the hands have been terrible. Unable to use thumbs for clutching even a glass of water, and sometimes they will lock the first joint, quite painful. This has developed just the past 3-4 months. I have had surgery for trigger finger on my right ring finger a couple of years ago, but it had taken about 5 years to get bad enough for that.
I have been on the Letrozole since November 2011. Other SEs have been few and temporary.
Vickie
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Hi, All,
I don't check in much, but so wonderful to know you're all out there for support and in case I have questions.
First, for those nervous about starting. I've been on Femara for 1.5 years now (tamoxifen prior.) lots of waves, as you've said, but nothing unmanageable. So happy we have this good drug in our arsenal. My attitude is that Femara and I are a team for the next 4-9 years so the trick is to figure out how to ride the waves:) ( manage the SEs.)
Re hair thinning, I had it a lot in the beginning! But it stopped and now my hair is back to normal.
Questions:
Hot flashes have reentered my life w a vengeance after stopping for a while. These are different, harsher. They begin with a feeling of anxiety, almost panic (comes out of nowhere, regardless of what I'm doing at the time, can even be in the middle of the night,) then there's a tingly feeling in my arms and legs, then that rush of heat and finally sweat. Lately this can happen as often as every ten minutes. I am trying to figure out if there are triggers to this such as what I'm eating, daily stress, etc, but it really seems to be random. Any ideas? Anyone else w something similar?
I've never been more than about 15 lbs overweight, off and on. Not great but nothing terrible. Size 12 at worst and I'm not short. I am suddenly gaining weight rapidly, in my belly area, another new thing. DH (who is a dr) says its testosterone and that I'm now gaining weight more similarly to how men gain weight. GREAT! So now I am a one breasted woman w a beer belly! Trying to laugh a bit, but whoa! I exercise and my eating habits haven't changed...I guess I need to quit work and take up triathlons and subsist on lettuce. Yay.
Oy! Thanks for listening
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Just a few thoughts...
If you are taking a short break from Femara (or any AI, for that matter) remember that it takes at least 6 - 7 days for the chemical to completely leave your body. (According to two different pharmacists I spoke to.) It may take much longer for side effects to reduce or go away completely.
And oh, the weight gain.....
Pre-AI, I lost 60 pounds, then gained 20 back once I started Arimidex. I completely blamed first Arimidex, then Femara. But I have just learned that it's been my thyroid all along.
Even though my routine thyroid results have always been "within normal limits" since I started taking Synthroid over ten years ago, my new PCP decided that my inability to lose weight even while maintaining a 1200 calorie a day diet and exercising five days a week, sleeping 12 hours a day, and being freezing cold all the time warranted further investigation. (SO glad I fired the old PCP!!!)
She ran a test on "Free T4" as well as TSH (Thyroid Stimulating Hormone).
The Free T4 came in at the bottom end of normal. The TSH came in at the very top end of normal. I started at "1" a year ago and now it's a "5". Basically, my brain is begging for more thyroid hormone!
Add that to the fact that I have been on the same 25mcg dose of Synthroid for more than ten years (which is the same dosage they start children on) she has now doubled my dosage, and says I should begin to feel better soon.
I guess my point is that there are so many conditions we may endure that have nothing to do with the AIs.... it's important to keep track of SEs, and always check to rule out other causes.
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I have learned that it doesn't have to be a beer belly. My 4 year old granddaughter described a man who has a belly as "the one with the Santa tummy". Feels better already!
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Ah, weight gain! I had done a lot of reading about aromatase inhibitors and weight gain so I was prepared for that. I have had to double my activity level to maintain the same weight. I refuse to lower my calories. How much more can they ask of me?? The extra exercise helps with the joint and muscle aches/pains.
I also had a TSH and Free T3/4 test and I am borderline hypothyroid, but still in the normal range. My PCP treats normal range patients when they present symptoms, but I don't have the symptoms so we both decidied to just watch and wait for now. Interesting how many breast cancer patients have hypothyroidism....or do we get both of these due to advancing age?
MsP
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Good question MsPharoah - I was recently dx with hypothyroid this past Feb after showing symptoms and very elevated TSH for the past 2 years. Finally PCP started me on Armour Thyroid medication. I was so exhausted and cold all the time plus the weight gain still is a struggle. Like you, I don't understand why so many of us have these thyroid issues. They say very unlikely due to iodine deficiency in this country. So why so common?
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I was diagnosed with hypothyroid back in about 1963 and have taken 1.5 grains ever since then. It maintains in the lower half of the normal range.
Vickie
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Thanks for your answers.
Another question. Are there any routine blood tests required while on Femara? I check my newly high cholesterol every 3 months, but do any of you know of anything else that needs monitoring due to the drug? Thanks
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MsP - Thyroid issues are commonly detected during menopause, so maybe that's just the crowd we hang out with! Congratulations on upping your exercise - you rock!
cp418 - I just read one report linking thyroid disorders (hypo- or hyper-) to autoimmune issues. Like you, I read that lack of iodine is rarely a cause.
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I was dx'd hypothyroid at least 10 - 15 years ago. Got my Rx for Synthroid, my semi-annual "thyroid" tests, and as long as they were "within normal limits" the old PCP did absolutely nothing else for years.
My background is in Medical Counseling, so I'm probably a bit more obsessive about health conditions than most, but I'll tell ya, after BC I have become an absolute Dick Tracy when it comes to different diagnoses.
I want to know what, when, why, how, AND how it can be cured without more drugs. I knew something wasn't right for a long time, and I just blamed the AIs. (Uh, wrong!) I should have been more assertive to rule out other causes.
I had a lumbar spine MRI on Wednesday, which showed 1) I have an old lady's lumbar spine (no surprise); 2) in addition to the anterolisthesis (a disk tilting into and pressing on my spinal cord) I have a cyst on my sacrum, filled with cerebrospinal fluid, and 3) there is a tear in the fibrous lining of one of my disks. This is fairly rare, but can cause intense pain, with no means of relief through traditional methods.
I blamed it all on the AIs. Wrong! (At least THAT specific pain....)
I'm supposed to see the pain specialist tomorrow for an epidural injection, but he and I are going to talk instead. He was my Pain Management doc in 2006, when I went through a ten-week Pain Management program at Kaiser. Best thing I ever did. So when the pains of the AIs hit, I really did try my best to deal with them, using all the good lessons I had learned.
Anyway, I want to know how I can regain the strength and energy I had right after my Exchange, when I'd lost a bunch of weight, gone off all Rx drugs, and had not started the AIs yet. I know I'll have to be careful, but I want to know what I can do to not hurt myself further.
Going off the Femara, I feel a huge responsibility to do as much as I can to be as healthy as I can. I know recurrence is a crap shoot, but this is just my way of dedicating myself to the cause! And aside from BC recurrence, I will be reaping the benefits of overall health. That's a good thing, I think!
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Greenarch, they should check your liver numbers and your blood glucose as a routine thing, in addition to the cholesterol. My cholesterol also tried to creep up on femara, but I managed to smack it down with diet, for now anyway.
Blessings, it makes total sense to me that thyroid problems could be autoimmune in origin. Yikes on the back. I think you have me beat in the bad back department, and that is saying something. I hope you find some relief. It is also a very good point that we should check severe pain and not just assume it is the AI.
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I have had a bone density test while on Femara because of the potential it has for, well, bone issues - but not til a few years in.0 -
I too have thyroid issues, it began when I was 30. MsP created a wonderful thyroid thread: https://community.breastcancer.org/forum/7/topic/819059
I have more I'd like to share regarding thyroid but don't want to high jack Femara thread. Hope to see you on the other thread
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Wow! I thought I was the only person with a scaly forehead...nothing on the rest of my face, just the forehead. I started using my Clarisonic every day with the Neutrogena facial soap (the liquid amber color). That has taken care of it for now. If I could just find easy solutions to all of the other SE's!
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Well, SHOOT! If I'd known about the Thyroid thread I woulda posted there, MsP!!! Will go over there after this.
I saw my awesome Pain Management doc today. He spent an hour with me, listening, doing a physical, and showing me my Xrays and my MRI images.
So much of what I have is just normal "wear and tear"... and I am actually doing VERY well, considering where I've been in the past, and what SEs I had on the anastrozole.
Of course, I was a bit sore today after taking a big fall in the garden last night. I took out a few irises as I went down, and landed on a flagstone paver, but at least I had my back brace on.
Mainly, I wanted to know how much control I had over my pain, given the new diagnoses. Would I have to stop exercising? He gave me some modified exercises, and told me to KEEP MOVING!
He was very impressed that I had started the exercises I did to keep the Femara SEs at bay. He said he wished every post-menopausal woman would focus on that and not worry so much about degenerative changes. He told me it was entirely possible to have multiple degenerative/arthritic changes in the spine, without terrible pain. Minor and transient aches and pains, yes... but not necessarily debilitating ones.
That made me feel a whole lot better. Like I said, I feel committed to getting as much exercise as I can now that I'm off the Femara. And I really do feel better the more I can move.
SO - good news today!
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Blessings, that sounds excellent all in all.
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HI:
A UTI IS AN UPPER URINARY TRACT INFECTION.
HOPE THIS HELPED A LITTLE
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Sgreenarch - for the hot flashes my CNP says stay away from alcohol, caffeine, spicy foods and that should help. I can abstain from the spicy & alchol, but NOT the caffeine. Love my cup a jo too much.
Has anyone experienced higher cholesterol level on Femara? Just curious to know as I may be starting femara in the fall and another lovely SE is that cholesterol may go higher.
Shelly
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My cholesterol went down since finishing chemo and having been on Femara for a few years.0 -
Lassie11 - so nice to hear that !! I read the list of SE's over the weekend from femara and it is pretty nasty. Not to say that everybody experiences the same SE's but from the volume of info from you ladies it sounds like the most common are weight gain, bone pain, chemo brain (again), terrible hot flashes, etc.
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Shelly, I have had joint pain and it comes and goes. The hot flashes were pretty bad, but have calmed down quite a bit (on femara 2+ years). My cholesterol did rise a little, but went back down. I have not had weight gain, but I do exercise and stick with a fairly healthy diet (lots of fibre, veggies, fish, nuts - minimal meat, dairy, white carbs). I am definitely more forgetful and dotty than before cancer, but whether that is chemo, femara, sudden menopause or just my true nature coming out
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Shelly, the largest se for me thus far is stiff joints - particularly in my fingers - upon waking most days. Once I get moving, stretch and/or exercise, the stiffness reduces or goes away...at least until the next day. I believe my diet and supplements help to.
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Hi Ladies,This thread was just recommended to me by another stage IV member (the metster sisters). I was on Tamoxifen for 2 years and could no long tolerate it's extreme s/e of being "HOT" all the time and the constant extreme hot flashes. After stopping it with the ok from my onco (as my 2 spots on my lungs seemed stable for 2 years) the spots took off and took over my lungs. Now I am looking to start a new drug trial and part of the trial is Letrozole (Femara) and a new drug in trial known as Palbociclib for 66% of us vs Letrozole and a placebo for 33% of us. We will not know which we are receiving nor will our oncologists. Only the Pfizer drug company will (even they will only know us as a case #).
So I will want to follow the s/e's to figure out what to expect and what may be the plabociclib (hopefully I'm one of the lucky 66% that actually get it).
Dreading the hot flashes again. I still get some mild ones but would not complain about those after what Tamoxifen did to me. However it was doing its job and held the two small spots stable for 2 years! Looking for your input and hoping for the best!
Cathy
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so sorry to hear of your progression. Hopefully the new drug(s) will conquer all. Femara/letrozole has strong se's for some but many people don't really have any. Hopefully you will be in the latter group.
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Tryn, so glad you hopped over to this thread. Welcome, and thank you for participating in the Palbociclib/Letrozole vs Letrozole trial. I have read great things about it and we are all rooting for our sisters in the trial. I hope you get the drug and achieve NED.
I am not experiencing any hot flashes on Letrozole and even those people with hot flashes report that they come and go. In the beginning, I would get a known side effect and say....Oh, Oh! I think someone said it best when they said it is like riding a wave. Many side effects come and go. I have noticed that when I get a side effect, it disappears within a month or so, especially if I manage it...like take proper pain medication, get more sleep, exercise, etc.
Like others, my cholesterol has gone down, but I attribute that to having a more healthy diet and exercise routine. I am feeling really good...on Femara about 10 months and just pray it lasts.
I wanted to make a recommendation to any ladies who are having joint and muscle pain or residual skin and tissue discomfort from radiation. I am using Original Blue Emu - super Strength. It has Emu Oil, Aloe, MSM and Glucosamine so it may not suit you, but I love this stuff. You can buy it online but also at Walgreens and CVS...about $18/jar. This stuff is great for minor aches and pains, rashes, burns, etc..... is cooling, doesn't smell and does what the label says.
MsP
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Thank you gardengumby - hoping I am in the latter group!
MsPharah - thanks for the welcome and well wishes. However I will never be NED now. My onco said they can not stop it but can slow it down. I'd be quite happy with that rather than the alternative! I am told again and again that this trial looks promising so here's hoping. I think I'm a bit paranoid with expectations of hot flashes after my experience with Tamoxifen. Hopefully at the very least that they do come and go if I have to have them back. Also my onco told me that there are drugs to help me with that too. I wish I had tried that when was on Tamoxifen I may not have been here today had I stayed on the Tamoxifen.Cathy
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a new SE .. Has anyone had a fullness in the ear? (Similar to when you fly in a plane) Will get it checked out but just curious if Femara has anything to do with it?
Thank you!
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