FEMARA

gardengumby

I 2nd Chrissy's post.  I've been on letrozole for only 3 months, but the SE's have definitely been doable thus far.  Unlike Chrissy I don't have much fatigue - some dry skin, a little sleep disruption, and some achiness.  So far (crossing fingers) no cholesterol or hypertension.

ginsing

I was on Tamoxifen for 3 weeks in September 2011 and then they changed it to Femara. The hot flushes and night sweats kicked in very quickly and stayed when i was switched to Femara. Then the pain in the fingers, fluid retention, exhaustion and depression started not long after. The constant lack of sleep was just awful. After a couple of months of thinking 'how can I do this for five years', I made the decision to go off the hormone treatment. The difference it makes in my opinion to the percentages game with regard to the cancer coming back is minimal. I have now been off it for 3 months and while the symptoms are much reduced...I can finally sleep at night...I still have the odd night sweat, hot flush during the day and my fingers still ache but I can function again and I have a life. 

Seashellie

Hi bgail84,

I have had very minimal SE's from Letrozole. I've been on it for almost 6 months now and my skin is drier and it gives me really loose stools (which I understand is rare) but that's really all that I've noticed. I get a little stiff after sitting for a long time but not sure if that's the drug or not. I take it at night so if it makes me tired, I haven't noticed. I'm going to start checking my cholesterol next month so I can keep track of any changes with that. Hope this helps and that you have smooth sailing with it as well.

Shelly

bgail84

Thanks for all the information! I will give the Femara/Letrozole  a try and hope for the best!

FilterLady

Hi Everybody: I start taking the Letrozole today after 35 radiation treatments. I'm praying for no side effects but am prepared for anything now. These boards have been a real source of inspiration and information since I was diagnosed. Thanks to everyone who contributes to this forum!

chrissyb

Well girls, the first statin was taken yesterday......ugh!.......another pill to ass to the masses!  I asked the doc what if any the SE's were with this pill and he calmly tells me, 'oh, you will possibly be a bit achy and tired'........WT?.......how can one person be more tired than I am right now?...... and you mean to say that I have escaped the achy bit with the Femara only to get it with a statin?..... This is not a happy camper I can tell you but I guess it's better than having a heart attack!  I had to laugh at a comment my DD made when I was telling her, it was as follows....

You mean to tell me, that you take a pill to stop you from dying of cancer only to have to take another one to stop you from having a heart attack.........great.......so they are saying, pick your way of dying.

I LMAO as shee was sooooo right it's laughable!

Love n hugs all.  Chrissy

stephN

bgail84, I've been on letrozole for about a month and I've had increased hot flashes, but other than that it hasn't been too bad.  I've had insomnia, but I had that before, so I'm not sure it's worse.  I'm determined to take it, so I feel lucky that so far, everything is fairly manageable.  Good luck!

Ginger48

My experience has been the same as stephN and I have been on it about a month too.

chrissyb- my DH takes a statin and has not had any side effects so I hope that is true for you too!

emegram

Well, girls, I've been off of Femara for over 3 weeks now -- taking a break, with my oncologist's blessing.  And I'm not noticing great deal of improvements in my joint pain.  In fact, my low back is still very painful, as is my hip!!   I'm trying Melatonin for sleep.  Does anyone else dream ALOT taking that stuff???  And I've been on a statin for many months with elevated cholesterol.  Had to laugh at Chrissyb's post --- cancer or heart attack????  A good laugh is indeed good for the soul! 

crazy4carrots

I don't know whether this works for everyone, but I switched from Crestor (a statin) to a daily 500 mg capsule of aged garlic (the brand I use is Kyolic), and my LDL dropped to acceptable levels within about 3 months.  I do try to avoid dairy and animal fats, and use olive oil for sauteeing etc.

 

As for SEs from Femara -- I've been on it for over 3 years.  It took awhile to get used to morning stiffness (and stiffness after sitting awhile), but my trigger fingers disappeared, as did my joint aches -- after about a year or so.   

walker2222

I had my MO appoint last Friday and the results of my bone density test were in and they were not good.  I have been on Femara for over a year now and the only SE i have had were minimal hot flashes, which have decreased to almost none, an increase in coloestoral (now taking meds for that, back to normal) now I have a decrease of 13.3% bone density in my lumbar.  I am nervous about taking other meds because I have had minimal SE.  The alternative my MO is giving me is having a Zometa infusuion which should stop the decrease of bone density and strengthen the bones.  Read up on it and I am OK with it.  It does not come in pill form so it has to be infused through an IV.  I am having it done on Thursday.  Wish me luck.

emegram

Walker2222 - So sorry to hear of your bone loss in your lower spine.  I have taken the Femara since May, 2010.  My recent bone scans came back:  "Normal range - for a person your age."  I'm 64 yrs old, and my lumbar region causes me so much pain.  I've been told it is degenerative disk disease.  I'm now on a 2-month break from the Femara, suggested by my oncologist, to see how I feel.  So far, it has just been 3 weeks & I'm not noticing any difference.  I take a statin for cholesterol, blood pressure med, and Effexor for Femara's sleeplessness & hot flashes.  Also Vit D3, calcium and fish oil.  Good luck with the Zometa & let us know how it goes. 

nanna

walker222 I also have to do zometa infusion every six months just make sure you drink plenty of water the day before and of and day after the treatment,also take you some kind pain med this will help with the aches you have. I take tylenol. My 1st infusion after i was achy. After that had no problem. Good luck!!

walker2222

Thanks Nanna I'm glad I'm not on this one on my own.

artsee

You guys are very fortunate. Unfortunately my insurance doesn't cover anything that has to do with Osteoporosis, and I have is bad. So I don't do anything because of out of pocket expenses that I can't afford. My DH and I already pay $1700 a month for insurance because of early retirements. I don't want to wish my life away but Medicare can't come soon enough.

tenaj

Feel your pain about monthly insurance bills. Last May we started paying COBRA because my DH was laid off & ironically that was when I was diagnosed with BC. The upside of him being unemployed was that he was there to take care of me & be at all the appointments :-).

chrissyb

Hi all!  Already been on the statin for a few days and so far so good!  no extra aches or fatigue....yay!   Maybe I'm going to dodge the SE's which will make me very happy indeed.

Thankfully, so far, my bone density has been really good but I'm due for another Dexa around mid year....I think............so I guess I'll find out what if any damage has been done by the AI's. 

Walker I also get lower back pain and somedays are debilitating!  I broke my tail bone many years ago and now I have extensive arthritis  and I know it's this that causes my pain but there is always that niggle in the back of my mind that it may be something else.

I winge about the cost of private health care here in Aus but I think I'll bite my tongue in future after hearing what you girls pay!  I pay $350 per month and because I have the disability pension, all scans,xrays and pathology tests are free with no out of pocket at all and all doctors visits for specialist care are at a reduced amount so there is very little out of pocket expense.

Tenaj, my DH has been to only one appointment and that was the very first one with the surgeon.  I don't make a point of pushing him as I prefer to go on my own anyway.  Having said that, he is a wonderful support and is often doing things to make my life easier.

Love n hugs all.  Chrissy

stoney

i have been on hormone therapy for two years, tamoxifen for first eight months(stopped because it was making me feel i was going insane)have been on femara since oct 2010.

i am wondering if anyone has stopped taking the hormone therapy before the five years was up and if so how did you come to this decision and does anyone know if the odds go up drastically with stopping for cancer recurring?

i am afraid to stop taking femara but i am also so very very tired of all the side effects i am dealing with. 

ginsing

I found the SE's took a while to dissipate after I stopped Femara. I noticed a real drop in pain after about 6-8 weeks. I am now 3 months post Femara and the pain in my fingers has almost gone. I am sleeping like a baby now....wonderful.

ginsing

Hi Stoney, my stepfather is an Onc and he gave me the picture on %. The max difference the hormone treatments make is about 10% but more likely to be around 8% with regard to the cancer returning. With some cases it is even less. I am amazed that they are still expecting women to take these drugs for 5 years...I know some people don't have a problem with the SEs but for those that do it can be absolutely dreadful. I was diagnosed 30th May 2011, and now I am feeling good again for the first time in 8 months after going off the drugs. I have tried to do as much as I can to reduce all other risk factors - stop alcohol, cut down on red meat, increase veg and fruit, green tea, exercise every day etc. I know a lot of women in Australia who have made the decision to go off treatment as they found it intolerable. If it was only for a year then maybe more people would stick with it but not for 5 years. Having said all that, I have not told my stepfather! He would be worried. My GP (female) totally understands and my Onc....weill I tell him next week!

justagirl

I have been on femara for 1 1/2 years and have side effects: tired, can't sleep, achy joints, swollen fingers, moody, dry skin, and have absolutely no interest in sex (which is so weird for me).  Wanting to have sex used to be like an itch and I just had to have it scratched.  I used to call my DH on his cell and ask him to come home so we could have some private time before our son came home from school.  I may be 59 yo and DH 77 but this is really trying to wreck our 33 year relationship - the one on one us time.  Oh and I have shocking hot flashes where the perspiration drips off my face. 

Spoke with my lady GP and she thought after I had the DM and since the nodes were clear even through it was a Grade 3 aggressive invasive tumor, and since I did chemo and rads,  the GP agreed with me that the benefits of taking femara were not worth the side effects.

So, off I march to the oncologist and in her quiet voice she says, double mastectomy or not, chemo or not, radiation or not, it is to your benefit to take the femara.  Oh.

So every morning I swallow that pill, hoping to never have my life threatened by BC again.....now if I just could forget about it.............

ginsing: when are you going to tell your stepfather you stopped taking femara?

I used to think, ok, one in eight women get breast cancer.  I'm healthy, don't drink or smoke, exercise, eat well, lots of veg and fruit, green tea, weight low, no family history.........it won't happen to me.  WELL, I was the ONE in EIGHT!  So, now when I think of odds and the numbers are low, that doesn't assure me  it won't happen to me.

Oh, and after my original lumpectomy the breast surgeon said there was only like a 3% chance of reoccurance.......and then 6 months later we find out my other breast is full of stage 0 breast cancer......cells that aren't normal and have a 25 - 40% chance of morphing into breast cancer!!!

walker2222

Dear all who are still on Femara, I take my pill at night and do not have the usual SE in the daytime.  Someone recomeded it to me and it has been wonders.  I did used to wake up in night sweats early on but they have stoped.  I still have joint pain an neuropathy in my fingers and toes but everything has been manageable.  Something to consider.

crazy4carrots

walker -- I also take it at night.  For all of you having extreme SEs, it might be worth the experiment to switch to night-time.

justagirl

tried night-time.  no difference.

Ginger48

I take it at night too and have been pretty lucky so far. I have only been on it for a month.

I am however filling up with fluid. I am puffy everywhere! I do have lymphedema so my arm/breast area has been swollen for a while but now I am swollen pretty much everywhere. My fingers, legs, tummy, even my eyes are puffy...anybody have any thoughts? I am going to call my dr today to see how my blood pressure is.

artsee

Just a girl....the percentage I believe is now 1 in 5 women. That's how fast this stuff is running ramped. My SIL has 4 sisters and she always says they wonder which one of them is going to be the (one)

Chrissyb....Please give me your $350.00.

chrissyb

Artsee....Oh my!  are those really the stats now?  That is dreadfull. I honestly think that a lot of this is caused by the hormones they add to food products in order to get a greater amount produced and of course we injest those things when we eat.  It's bad enough that our bodies go crazy at menopause without adding more to our systems and that used to be the dx time for most but the ages just keep getting younger and younger. If those stats keep rising, then it will end up that no female would be safe from BC unless something is done to find a) the specific cause .....and not just say hormone driven or b) start producing clean food once again and see if that helps drop the stats once more.

I will never winge about how much my insurance is ever again.......I think after seeing what you girls pay that I get off very easy indeed.

lulubee

My sweet DH has to pay for two policies now -- one for me, and one for the rest of the family -- because his impulsive partner freaked over the economy and pulled the plug on their benefits package... before it occurred to him that I am essentially uninsurable now.  That was a year and a half ago.  I'm on high-risk insurance now.  The expense is eating us alive every month. I am still driving my 13-year-old car because of it, our gutters have rusted, our bare yard needs re-sodding in the worst way after last year's drought completely killed it off, and we really need to replace our 20 yo fridge... but now all that kind of money goes to insurance and scan co-pays.

Stupid cancer.

emegram

I'm now been on a "break" from Femara for 3 weeks.  I am so disappointed --- my joint pain is not noticeably better.  I have an issue with the lumbar area of my back, and an MRI did not indicate any cancer -- just degeneration of the disks.  At 64 years of age, I've still got a lot of living to do, and the pain is not much fun.  I also sleep fitfully - never stay asleep throughout the entire night.  Would like to hear from others as to taking a break from Femara -- or suggestions about my back issues. 

walker2222

Ginger, talk to your Dr. at once do not wait if you have swelling or puffiness.  My BS PA referred me to a specialized PT who treats LE.  Talk to them, I had LE about this time last year after my radiation treatments ended.  It helped soooo much.

I leave for my Zometa infusion at 2:30 today, I am also having additional labs done to check my vt D levels again.  Lets hope my bone density lose.