FEMARA

Momine

Grandma, good grief! Thing is that it is wrong.

Tammy_M43

Wow, this is very bizarre! I'll go by the manufacturer's information which does not have the body fluid warnings!

GrandmaV

I have e-mailed Norvartis about this, will let you know when I hear back ( they said within 24 hours).  I can't believe this is true either about the body fluids. 

Momine

Grandma, good initiative. It would be good to clear it up. As far as I know, it is bunkum. Also the warning is for 48 hours after a dose. With femara you take it daily, so the haz-mat precautions would have to be a daily thing.

honeybair

Corky, my MO told me not to read the warning info that came with the drug, but I read it anyway. I am so glad all of you are in the know about hormonal therapy and happy that I will not have to forego sex.

honeybair

Saw my MO today and she told me that Letrazole is not harmful to my partner, but it would make me very dry and to buy a product called Joe h2o which can be found at our local adult store Badd Kitty. so far, I have felt fine while on this drug. My herceptin infusion this morning has left me very tired this afternoon.

Hope everyone has a wonderful week-end.

Eph3_12

I'm having trouble with recurring UTIs that my urine samples apparently aren't showing as an infection, but I know that it is, but since its not "real" my doc won't give me antibiotics. I've been taking cranberry pills after I had the 1st one about a year & half ago. Had one in Sept that showed in urine sample so I got antibiotics for that one. I drink cranberry juice & probably at least 32 oz of water daily. Any other ideas out there?

jacee

eph...you might try AZO, over the counter. Works well for many.

micheleboots

Joni, I use to get yeast infections that felt a lot like bladder infections. At one point too I had a fungal infection but we only figured it out after my husband was diagnosed with athalets foot. So we both got cream and three weeks later we were cured.

corky60

Honeybair, some of us find that a water-based lubricant is not enough to maintain comfort. If this happens, you could try coconut oil, cocoa butter, olive oil, Carlson's vitamin E suppositories or Replens.

Eph3:12 I support the yeast infection idea. You may have to use over-the counter remedies or prescription fluconazole. There are so many nerves down there that sometimes it's hard to sort out what's what. At one point I discovered that certain laundry detergents and toilet paper caused painful irritation. And the benzoic acid or alcohol in over-the-counter yeast infection creams can cause pain in some of us. It's a process of trial and error to discover the source of the pain.

honeybair

Thanks, Corky. I already have organic coconut oil and it works well. Thanks for your input.

gardengumby

Eph - are you drinking the sweetened cranberry juice, or the straight - EXTREMELY SOUR - cranberry juice from the health food(ish) stores? The sweetened stuff will probably make the UTI worse, as sugar increases it. Anyway, another thing I do when I get it is eat tons of parsley and/or make parsley tea (I prefer eating it, personally)

Blessings2011

Eph3_12 - when I was on Anastrozole, I had such horrid bladder problems I made sure that there was no organic cause for the pain, burning, itching, and almost incontinence I was experiencing. I was tested for everything.

My PCP, OB-GYN, and MO all told me those symptoms were due to lack of estrogen in atrophied urethral and bladder tissues, and were documented side effects of the AIs.

Estrogen is the only thing that will revive atrophied tissues. Lubricants will keep things moist, but not plumped and healthy.

Fortunately, even though I am 100% ER+, my MO agrees that I can use a small amount of Premarin cream - just a tiny dab - on the outside tissues, and around the urethra. I can use it for two weeks, then take a break, and use it twice a week, then go back to the two weeks if I need to.

In the meantime, she says I need to keep ALL the tissues moist and recommends a wonderful, natural, organic ointment called "V-Magic" by Medicine Mama's Apothecary. It is sooo soothing!

I was in so much misery with bladder issues, and going back to the external estrogen cream eliminated all of them. It also eliminated those "Lady Parts" issues as well, and now my husband and I can engage in, um, intimate aerobics, if you get my drift.

I've now been on Femara for almost two months, and this regimen seems to be working for me.

Eph3_12

initimate aerobics haven't been in my life for over 10 yrs. Thanks for the suggestions ladies; I'll look into a few of them.

Blessings2011

Today was the worst pain day I've had since going off Anastrozole.

I've been on Femara two months; have kept gluten-free, have increased my daily exercise (like from less than 1000 steps to around 10,000 steps a day) and I've been coping pretty well.

But Friday we came back from our beach vacation (a nine hour drive back home), as soon as we got home, I started sewing, and stayed up til 2 a.m. Saturday morning trying to finish some Christmas presents for my SIL and BIL, then spent two hours in the truck yesterday as we drove up into the mountains to deliver them. (We found out too late that this would be the only time we'd get to see them. And she was giving me something I felt obligated to pick up.)

Maybe that was just too much. Today I feel like I could take a whole handful of Vicodin and it wouldn't help.

Now I have to get my butt in gear, take a shower, find some fancy-schmancy Christmas sweater, plaster a smile on my face, and get to a Christmas party. But we're old, and it should be over early!!!

O.K. Done whining. No need to call the WAAAAMBULANCE!!!

flat13good

Long ago I had constant issue with cystitis and it happened after sex and I took a low grade antibiotic every time I had sex.  then they stopped but now that I have had all this stuff going on it is happening again.  No fun at all.  Feel for you.

micheleboots

Blessing, it sounds like you have a lot going on. Remember to take time for yourself too.

gardengumby

Blessing - one of the reasons I retired was because of the pain I was experiencing. I now AVERAGE 11 hours a night (instead of the 8 I was getting). My husband was talking to me about it this morning and said that I am MUCH more pain free since getting the additional sleep (and the reduction in stress, too, probably). Don't deprive yourself of sleep - you'll not be a happy puppy...

GrandmaV

I finally heard back from Novartis about body fluids being dangerous.  Here's a copy of their e-mail to me.  It includes a link to complete prescribing information of femara, for those who want to read it.  You were right Momine, body fluids are not dangerous while on femara.  Now maybe we can get drugs.com and manufacturers to quit scaring everybody.

Thank you for your interest in Novartis Pharmaceuticals Corporation. We received your email and we appreciate you taking the time to contact us.

We do not have any information about body fluids being dangerous while on Femara. We suggest speaking with your healthcare professional or pharmacist. We also suggest viewing our prescribing information to assist you with your inquiry.

Below is the link to view the prescribing information for Femara:

http://www.pharma.us.novartis.com/cs/www.pharma.us.novartis.com/product/pi/pdf/Femara.pdf

For more information about Femara, please visit our website at:

www.femara.com


Sincerely,

Nicholas
Novartis Pharmaceuticals
Customer Interaction Center

gardengumby

Thank you grandma for pursuing this further with novartis!

Momine

Thanks, grandma. Maybe we could ask the mods to pin this or something, so it is available to new patients.

Tammy_M43

GrandmaV,  thanks for the confirmation.  I think sometimes people assume that any drugs for cancer patients are cytotoxics...when they aren't!

nanna

I  took my last femara 2wks ago after 5yrs on it. I use to have problem sleeping. Now have no problem with sleep joint pain gone and have lost 7lbs. Wow!!! what a difference

GrandmaV

Nanna, That's fantastic!  Congratulations on finishing.

Blessings2011

Yay, nanna!!!! Congratulations!!!

I have a new theory. Yes, it's a documented fact that AIs have side effects. And some of us have them worse than others.

But I started thinking about the joint pain I experience on Femara. The new joint pain since my year on (and two months off) Arimidex, and now two months on Femara has been joint pain in my feet (minor and doable), my knees (minor and doable), and hands (again, minor and doable). Exercise and movement alleviate the minor pain and stiffness.

However, I think that  some of us with pre-existing conditions may have a harder time of it. For example - I have degenerative disk disease, scoliosis, and spinal stenosis, as well as significant spinal issues at T5/S1. 

When those joints are inflamed, I can forget about walking. Apparently my pelvic bone does not move when my spine does. The pain is almost unbearable, and I have to endure days of anti-inflammatories, muscle relaxers, and pain meds.

I've gotten some good relief from myofascial release massage therapy, but that is supposed to be long lasting, and it's not. I just started PT last week, doing stretching and strengthening exercises for my back. And my MO just referred me to Acupuncture for joint pain.

I'm thinking that if I get this acute pain controlled, then I can manage any chronic pain much better.

Oh, yeah - my big theory: if we are going to have joint pain on an AI, it may be that it will attack our weak points (if we have them) first. Just a thought...

chrissyb

Blessings I have osteoarthritis in just about every joint as well as a compression fracture at T4 and osteoporosis at L2. Other than a little stiffness I really can't say I have had or have major joint pain at all other than the arthritis and that for me is manageable with meds and gentle exercise..........maybe the meds and exercise had stopped that SE for me?

Yay Nanna!  Fantastic that your pain is gone and you have lost that weight!  Hope the good effects keep happening for you.

Love n hugs.     Chrissy

gardengumby

Blessings - I think you are correct (personally).  As you say, IF you have SE's, I believe they hit your weakest, most painful joints the worst.  I have, as you, pain in my feet, knees and hands that is completely doable.  However, I have a herniated disk (L3/L4) and bone spurs in my right shoulder.  In those areas I am sometimes completely in misery.  In fact for the last few days my shoulder has given me such pain that I cannot sit, lay or even walk without feeling like I simply wanted to rip the arm out of the socket.  I'll admit that it's almost undoubtedly worse due to my stint of Christmas cooking, but nonetheless, it's been nearly unbearable.

Yeah for you, Nana.  In May of 2014 I'll be half way through my 5 years.  I am so looking forward to the end.

Momine

Blessings, I have always had bad knees (inflamed cartilege, known as runner's knee although I never run), and they have gotten worse and arthritic on femara. Most of my joint pain is also in the feet, but walking makes it go away. So, it does make sense that if you have other problems that prevent you from exercise, for example, then the SEs from femara might seem a lot worse.

I also have bad disks, a herniated disk, severe scoliosis etc. I am lucky in that the pain from all this is annoying, but not usually bad enough to prevent me from walking and lifting weights. I have found that abstaining from any and all housework does wonders for my back pain

Scottiee1

Nanna......congrats!!!!!!!....please keep in touch and tell us about all the wonderful new things we have to look forward to when it is our turn.....lol.....I have another 3 years to go......can't wait.   I don't have any issues with sleep but joint pain is getting progressively worse the longer I'm on L.  I'm determined however to stick it out as everything is still doable.   

Blessings2011

GrandmaV – thanks for the research.

Chrissyb – so glad your SEs are manageable. Wait, they’re
more than manageable. From what I hear on other threads, you ARE the Energizer
Bunny!

Thanks, micheleboots – I think I am taking the entire rest of
the Christmas season for myself!!! And you?

Gardengumby – thank God for retirement. Unless I have an
early morning doctor’s appointment, which I avoid at all cost, I never set my
alarm, and sleep til I wake up. That makes a huge difference. Ohhh, I feel your
shoulder pain! In 2000, I had a shoulder reconstruction (done arthroscopically,
thankfully) and they cleaned up masses of scar tissue and bone spurs and shreds
of ligaments from an earlier fall. Prior to that surgery the pain was 24/7, and
felt like a gunshot wound. (Or rather what I imagine one would feel like since
I’ve never been shot…) Do you have any plans to have your shoulder fixed? I
hope your pain resolves soon… I know how miserable you must be.

Momine – I think you found a perfect solution for your
back pain!!!! :-) Unfortunately, I can’t blame too much of my pain on housekeeping,
as we have retained the house cleaners we hired after my BMX. They do all the
heavy work. I just try to keep an open space for them.

Scottiee1 – Hang in there! Are you exercising? My MO
SWEARS that’s the answer. She says she doesn’t care what I do, she just wants
me to keep moving, and doing as much (or as little) as I physically can. Every
day you stay on the drug is one less day you have to be on it in the future. Before
DH retired, I bought him a “Countdown to Retirement” clock that showed how many
days, hours, and minutes he had left to go. (It measures 5 years, so in the
beginning, wasn’t too exciting.) But I think maybe I could find it and reset it
and call it my “Countdown To Going Off Femara” clock… gee… just four more
years!!!

~ ~ ~ 

Ladies with existing back problems – how many of you have
had MRIs of your back? As I look back, I think I have had only X-rays. As the
pain gets worse (and more frequent) I’m wondering if an MRI might be in order?
My diagnoses are from a few years ago…. Your
thoughts?