FEMARA

nikola- I've been taking 1/2 a pill a day for the past 18 months. Side effects were too severe when I did a whole pill. Onc said he'd rather me have some in my system every day rather than skip a day. Seems my s/e's started about 2-3 weeks after starting a pill a day. I've never had any hair loss with Femara.

Well, I hate to say it but I am not having a very good experience with the generic anastozole (arimidex) either. I am taking 1/4 tab twice a week and I feel dizzy and the constant need to take a deep breath. Tried going up to 3 doses a week and felt like my head was going to explode. Any one else felt pressure between the ears? I was really hoping Ferma might be better. It's been 5 weeks now and it does not seem to be getting any easier.

Chrissy, last I checked all systems were good but I will for sure check that out again.I am also weaning myself of Lorizopam, and taking some supplements. I know that Lorziapan has withdrawal symptoms and one of my supplements is very powerful as well.  It is hard to tweak out what is causing what. I also have PTSD so everything makes me think OMG its cancer. I have to work hard at overriding those thoughts with positive affirmations. Thanks for responding and letting me know that you have felt this too. It really helps me to hear that others have the same experience, helps with the fear factor.

Yup....got those thoughts as well. Been having headaches lately...which is supposed to be a s/e of the generic Femara, but my thoughts go else where.

Merrilee...I'd love to go off of the Lorazapam, but it helps me sleep. If I forget to take it at night I am awake half the night for sure. I'm between a rock and a hard place.

I've been on the generic from Mylan for about 3 weeks now.  I have increased joint and muscle pain, cramps in my feet and swollen ankles.  Still this is far superior to the SE's I had with tamoxifen, so I'm not going to complain (well, not too much ).  My oncologist said that I might be able to take a month or two "vacation" from it each year, and I hope she doesn't change her mind, as a little mini vacation from drugs sounds good to me.  

I had no rads nor chemo, so don't feel like I've got a choice.  I cannot do tamoxifen, as it caused severe problems for me (blood clots plus other breathing issues).

Someone earlier posted about finding a natural hormone blocker.  I went to a naturopath who is supposed to be an expert at cancer and he said that there really isn't any such thing.  He gave me a couple things to take but neither of them have anything to do with blocking hormones.  If you find something would you please let me know?  I always have better success with "natural" remedies than I do with pharmacology.

So far, the letrozole (femara) hasn't made me terribly tired.  When on tamoxifen I could have easily slept 14 hours a day (and did sleep 12 - and was still exhausted).  So far at least I've had normal energy on this stuff.  For the people who have fatigue from letrozole/femara - how long did you take it before the fatigue kicked in?  Same question in regards to hair loss/gain?

Thanks!!! 

Chrissy, I love hearing that!!

Chrissy, thank You for Your post.

I just decided several days ago to start with Femara. I did everything (double mastectomy, chemo, oophorectomy) without second-guessing but going on AI was a hard decision. I had my prescription for Femara since April, was afraid of all SE and tried my best with diet and exercise to decrease even further my estrogen levels.

Then, last week a good friend of mine told me she felt two lumps and she has had biopsy the same day she had u/s. That showed me I would never forgive myself if I did not try everything.

So far I had three pills in the morning. Do You find them easier to take before bedtime?

I did notice some hair loss after my oophorectomy but that stabilized in month or two.

I can second Chrissy's experience in several ways.  

My first several months on Femara, if I sat down I was nodding off in no time. I had waves of fatigue that were non-negotiable. Like Chrissy, I also found that taking it in the evening (between 6&7 is best for me) really helped. Now, a year later, fatigue is not a regular problem for me... I have my days, but then again I am 50... and at any rate the fatigue I have now is rarely as insistent as it was those first several months.  I like to think that the utter exhaustion I felt in the beginning was healing fatigue!

Also like Chrissy, I started noticing my hair was thinner about six months in.  It's a general thinning all over, but it bothers me most around my temples. I am taking B vitamins and hoping the biotin will keep a lid on it. Meanwhile, I just keeping going shorter and shorter, a couple of inches at a time... it's about ten inches shorter than it was a couple of years ago.

So overall my experience after one year on Femara is that the fatigue and the hot flashes are both definitely improved.  That is a Big Deal.  On the other hand, my joint stiffness has increased a bit, and I feel like I've battled the blues more in the past few months, and my weight seems to climb faster the longer I go without estrogen. (I need to exercise more, but ya know, it's hard to think about the elliptical first thing in the morning when you wake up with Femara feet!  Ouchy!)

BUT... must keep all these aggravations in perspective... at my last biannual scan (in April-- I'm due for the next one later this month), many of my extensive bone lesions had disappeared and all the rest were smaller. My pericardial effusion from six months prior was gone, and some former spots of suspicious glucose avidity in the original tumor bed area had also vanished.  By October, my tumor markers had fallen to within a normal range.  

So I guess if creaky joints, a thick waist, and less glamorous hair are the price I have to pay for progress... ie More Time... I'm good for that trade.  Even though I hate the way the stuff makes me feel, at least I'm still here feeling stuff!

Check out the newer drugs for osteoporosis - there is one my mother uses that is administered with an epipen like diabetics use.  It has fewer side effects, you dose a tiny amount every day so the side effects stay at a minimum.  Also if you do have a reaction, you do not have 6 month to a year of it in your system!  This drug builds bone as well.  Worth your time to check it out.

Hi Anthunter, I havent heard of that drug but will certainly check it out. Hair loss can be caused by the lack of estrogen as well as the side effects of the aromatase inhibitors. It can also be caused by thyroid problems. My hair is thinniing but I will not be stopping the femara that I take due to being stage IV. Hopefully the thinning will slow down or stop before it's all gone. I have heard that after stopping the drugs hair does recover somewhat but I'm not sure if it does fully.

Hope this helps.



Love n hugs. Chrissy

Hi Onward, I'm on Femara but I'm not having any significant se's.  Have you tried either Arimidex or Aromasin?  They are both Aromatase Inhibitors.  Arimidex is very similar in make up to Femara but the Aromasin is put together differently and has a steroid base.  If you haven't ried either of these and because of your reaction with Femara, perhaps your onc will want you to try thr Aromasin.

Hope those rough days become less and less and you feel better and better.

Love n hugs.  Chrissy

Hi Chrissy, they are putting me on Aromasin next week for that reason. Hoping it's the answer.

Onward, good luck with the Aromasin! I hope you tolerate it much better ans the se's are either none at all or tolerable.



Love n hugs. Chrissy

Lulubee...I agree with EVERY word that you just wrote in your post.

I could have written that myself.

You can PM any time. We'd have a lot to talk about.

Artsee

Jacee......I agree with EVERY word you said too. It sounds at least that the last three poster are all in a slumperino. Forced myself to put the tree up. So behind in shopping and the spark is not there. I always had to have Christmas music on too and din't bother this time.

As for scans I had a heel one that showed bad osteoporosis about 10 years ago and nobody has even mentioned that I should have another. I really don't want it because my insurance wont cover anything that has to do with osteoporosis, because it was a preexisting condition when I joined that insurance company.Also I had to go off the drugs for that because they gave me chest pains and ended up in the ER twice.

We have all been diagnosed some time ago....so why the feeling like this? FEMARA?