FEMARA

wintersocks

I wonder what my surgeon will say when I see her next in May? We may have a different protocol here in Britain, so far there are only whispers about the 10 year possibility.

Thinkingpos - I wish it were our imagination...

marijen

There is no way I'm going to feel stiff like this for 10 years. Only one year so far. There should be a better option down the road.

Tammy_M43

When I saw my surgeon in February he asked me whether the onc had mentioned 10 years. I told him we were yet to have the discussion. I really undecided but I still have a couple of years before needing to make a decision

KBeee

I know I am on the 10 year plan since this is a recurrence. If I make it 10 years without another recurrence, I'll be super grateful!!!!! I do wish they'd come up with some alternatives though. This joint pain is for the birds.

Vicks1960

I have been on the Letrozole since November 2011. Have lots of aches in my hands, that I believe are side effects. I have had neuropathy for years in my feet, caused by nerve damage from 4 back surgeries. When I last saw my MO in Nov.2015 he told me that he thinks 5 years will be enough for me. Looking forward to not needing to take it. Hope the general feeling of the blahs and pains in my hands will improve after that.

Also hope the thinning of my hair will stop (and whiskers on chin/upper lip get less).

Vickie

gingerstx

I've been on Femara (generic Letrozole) since the beginning of May, 2011. Since that time I've had some minor SE's such as insomnia and pain in my hands, but they've always disappeared or lessened to the point of not being a problem. I saw my MO in early February, had my mammo and bone dex, and discussed whether I should remain on Letrozole for another 5 years after May. Although my bone dex didn't indicate that the drug has been affecting me adversely he said he wanted to wait for a factually based report about the long-term effectiveness of the drug that is supposed to be released at a big conference this summer before making his determination for me.

Optimist52

That sounds interesting. I would like to know results of the report.

savgigi

Thinkingpositive, I got a steroid injection for my trigger thumb and it resolved. The ortho said about 50% of his patients need a second injection and about 50% of those require surgery to resolve it. So far, mine is doing much better 3 months after the injection.

ThinkingPositive

Savgigi...did your ortho say if it's related to the letrazole? I am thinking it is definitely a side effect. My fear is my other hand is starting to bother me. Can't deal with it on both hands! Did the shot hurt?

Aoibheann

I stopped taking statins (crestor) shortly after I began to take femara a few months ago as I understood that statins interacted with femara. However my cholesterol is rising and is now at 7.5 so I'm thinking of going back on crestor. Has anyone continued to take statins and what, if any, SEs have you had? As for SEs I'm having severe hot flushes and literally drip with perspiration. Also having tender pain and darting and twinges of pain in my left mid back, under my ribs. I mentioned it to the nurse today and she thought it was muscular, wondering if anyone else has experienced this? Usual paranoia about unexplained pain...

bgrabowski

I just put a call into my oncologist, I have been taking it for a year and a half and the side effects are very strong now as opposed to when I first started taking it. My knees are like an old woman when I get out of a car. I hope he can change the meds for me.

KBeee

I had 2 steroid injections for trigger thumb (prior to Letrozole...started after Taxotere) and then required surgery. Injections hurt initially and it's sore for a day, but then eases. Surgery was in office under a local and it was easy. I was chatting with the doc the whole time (but watching that stuff does not bother me).

MsPharoah

Aoibheann, I have been on a statin the entire 27 months and have not heard that statins interfere with Femara, only that since statins can cause anthralgia as a SE, the joint and muscle soreness you experience can be heightened when you take both medications. On the advice of a bco sister on this thread, I take my statin and Femara at different times of the day and it helps tremendously. Still have stiffness, but the soreness is dramatically reduced. I definitely know what you mean about unexplained pain. Maybe it would help if you kept a log of the pain so that you have some historical information to share with your doctors. I do that and often I find that the pain goes away...why or how is unknown, but it helps me make things more objective, not so subjective. But ultimately, whenever you are worried about a pain, twinge, etc., it doesn't hurt to ask that it be checked out. Good luck with your cholesterol.
MsP

tangandchris

I'm still wondering how your MO's treat the pain that you are experiencing on Femara....do they give you rx meds or just OTC? I'm just wondering if it is unreasonable to expect something rx?

Also, now I'm noticing a very noticeable increase in appetite. I know that an SE can be weight gain, is that due to being more hungry or just slowing down metabolism?

Thanks ya'll!

Vicks1960

It has been some time since I read the possible side effects of Letrozole/Femara, but I think elevated cholesterol can be one of the SEs.

Vickie

MsPharoah

tangandchris, I have never asked for rx pain relief. When I am particularly sore, I take an OTC and luckily, I don't need it often. If you need something stronger, talk to your MO or PCP. To be honest, if I was having pain that required something other than OTC meds occassionally, I would want to eliminate all other possibilities than SE's from Femara. You could have arthritis, fibromyalgia, etc that would need specific meds/PT etc. for pain relief. Or maybe switch AI's to see if a different one brings less discomfort.

I think the weight gain is a change in metabolism which I attribute to aging and the acceleration of aging that occurs with Femara. I've always had a "healthy" appetite (sadly) so I don't attribute that to Femara. What I have noticed is an increase in the waistline and accumulation of fat around the middle, despite not packing on more pounds. YUCK! Anyone else have their weight under control, but more flab in the middle??

MsP

savgigi

Thinkingpositive, the ortho did not really want to discuss cause. I talked to my MO about it and he said it could be letrozole, although he did not have any other patients complaining of trigger finger. But he also said it was possible he has patients with the problem who just did not report it to him. But whether or not it was caused by letrozole, he said stopping the med would not reverse the trigger finger.

savgigi

Aoibheann, I took my statin and letrozole but was having tremendous muscle cramps, I would wake up in the middle of the night hurting from my shoulder to fingers and hips to toes. I figured out through trial and error that the muscle pain was minimized by taking the statin at night and letrozole in the morning. Taking them at the same time caused me considerable pain.

MaggieB

Hi MsPharoah, I've been on Letrozole for 14 months and my main problem was hot sweats. The oncologist suggested I try Venlofaxine and it really helped. I had little problem with aching joints until the last few months. Now I'm so stiff I can hardly move - my knees, my shoulder, my feet, and particularly my wrists and hands. You're quite right, arthritis and fibromyalgia can also contribute, but I had no complaint with arthritis before and have had fibromyalgia for the past 30 years. Fibromyalgia pain is usually in the muscles and not the joints. I have been told that the pain will be with me as long as I'm on the Letrozole so I hope rumours aren't true about 10 year treatment being necessary instead of 5! Had my last visit with the oncologist in Jan. Everything looked O.K Yay!

Aoibheann

Ms Pharaoh and Savgigi, thank you for the advice re taking statins at a different time to femara. MsP, good idea about pain diary. Sorry to hear that you still have aches and pains with femara. I was hoping the body would get used to it.

ThinkingPositive

i'm trying to lower my cholesterol by diet and exercise I don't want to go on another medication. I have a few months to get my cholesterol down before I am tested again. Any suggestions on how to get it down quickly.

ChiSandy

My husband the cardiologist and my PCP are at odds about statins. Hubby thinks they should put them in the drinking water (he takes Lipitor), PCP tried me on Lipitor 3 yrs ago but took me off it when I developed severe thigh pain (statins can actually cause rhabdomyolisis, which is muscles slowly dissolving!). Lowering carb intake was enough to keep my HDL high and LDL acceptable. There is no correlation between high cholesterol--or even high HDL--and heart attack or stroke in women who’ve never had a heart attack.

Could be one of the reasons I have only mild joint symptoms is that even before starting letrozole I’ve been taking prophylactic arthritis-formula acetaminophen at bedtime and celecoxib in the morning. I get startup pain in my right hip (a recurrence of the bursitis I had last spring from pulled glutes) but it goes away after the first 10 steps or so--whereas last spring it was so bad I had to use a cane all the time. My hair isn’t any thinner than before bc--but it had already been thinning over the past 3-4 yrs. Hasn’t been falling out as much as it used to. You do know that hair grows in cycles, and “fallout” is its resting phase. (That’s why it’s so thick during pregnancy--everything grows--and so much falls out postpartum). When I was a kid I had very thin, baby-fine dark blonde hair till I was about 8 or so. From then till puberty it gradually turned brown; and didn’t get thicker or coarser till my late teens. So I guess I’m having my second childhood.

Aoibheann

ChiSandy, that's very interesting. Fantastic that you were able to reduce your LDL by diet. My friend's hubby reduced his also through diet and supplements but it is hard work. Do you mind my asking what you eat? I think I eat healthily but I love bread. Does your hubby think that high cholesterol is genetic or due to diet? My dad was slim, had high cholesterol and took statins. He had a stroke when he was 72.

What dosage acetaminophen do you take? Any particular reason for taking it at bedtime? My GP is a great believer in paracetamol so I think I'll try taking it, though probably in the morning when I want to be out and about. I don't believe it can do any harm. Unfortunately I can no longer tolerate NSAIDs or I'd add that too. I'm frustrated by being so slow and achey. Still though I'm absolutely delighted that I'm stable so far and I'm scared that I'll hex myself by complaining. I'll take the SEs...just wondering what helps others deal with this. Sorry if I'm asking too many questions

CatsRus

My cholesterol was on the higher side of normal for a few years prior to by BC dx. My diet certainly improved and until I started chemo I was losing weight slowly but steadily. I gained weight on chemo and since being on Femara have been unable to lose it. My cholesterol jumped so my PCP Rx'd statins, I don't think it was my diet, I am pretty sure it was the Femara. Also while I know some people can control their cholesterol with diet, I also know my husband isn't one of them. Some years ago when first dx'd with high cholesterol, he was on a mission to stay off statins. He exercised, he ate nothing that was on the 'bad' list, he practically lived on salad for three months. He lost over 40 lbs but it changed his cholesterol not one little bit!
i would certainly try to control it with diet before taking anything, but just know that diet alone may not work. I wish you well.

513mgv

I have a lot less joint pain and stiffness on letrozole than I did on aromatic. I have found taking glucosamine and turmeric very helpful for the joint discomfort. Have a pain free evening. Marilyn

beergirl

Is there anyone here who has developed ONJ? My new dentist listed me as high risk for ONJ. I took oral bisphosphonates for at least 5 years before IDC diagnosis. After surgery, I had IV bisphosphonates, Aredia, Zometa, Reclast for 6 years, then switched to Prolia injections. I am having a lot of anxiety over the possibility of ONJ.

ThinkingPositive

what is ONJ? I am on actonel end was not told about this. Is there a problem with having dental work?

Brutersmom

Beergirl Check out this article from Rheumatology.org. It sounds like the drugs you mentioned are the cause.

www.rheumatology.org

beergirl

ONJ is Osteo Necrosis of the Jaw, or death of the jaw bone. I was not told about it when I was taking Actonel for 5 - 10 years before i was diagnosed with IDC. My oncologist mentioned it, but said such a low percentage of people that took bisphosphonates ever developed ONJ, I really shouldn't worry about it. After being treated by this oncologist for more than 7 years, I switched to MD Anderson. The doctor there was very concerned and told me to never take it again. She also said that after a point it begins to do more harm than good. Please discuss this with your doctors.

beergirl

Brutersmom, that's it. I have a tooth that broke off below the gum line. The dentist plans to do a root canal and seal it - no crown.