FEMARA

Eph3_12

I have the same question as Momine. How does your doctor know the Femara isn't working?

ptdreamers

perhaps her tumor markers are rising or staying the same. I would imagine they would go down if the drug is working.

Eph3_12

not all doctor do the tumor markers.  I've never had it done.

Linda-n3

I don't get tumor markers done either, but have had 3 new nodules from armpit to chest develop AND the initial lump has doubled in size in my axilla since starting femara, which is why the MO says it isnt working. She wants CT done next week also. She seems to be knowledgable and actually does clinical trials, but does not seem to think tumor markers are helpful, but I haven't really pushed for them. She mentioned a couple clinical trials that I could participate in, but did not push them, she just gave me the information. I have declined.

Momine

Linda, that really is not fair. I am so sorry. Let us know what the CT shows.

jittersmom

does anyone have shoulder pain from Femera? My shoulder and arms seem to have a lot of joint pain

Lily55

Yes i do, actually getting worried at how much joint pain i have, not sure if they are doing me harm and i feel old and very erratic mood wise

maltomlin

Hi

I'm nearly 5 years out from dx and have been taking femara for most of that time.

Yes, I have ache or pain in my shoulder and neck but put that down to the fact that I had 24 nodes removed. It comes and goes (and has been doing for the last 5 years). I've got used to it. Sometimes it's worse than others.

I find it one of the lesser evils of this disease. I'm still here and can enjoy life, although with some limitations.

Lily55

Does anyone else have severe lower back paín, and hip and groin too with lots of stiffness? Does femara weaken joints?

Scottiee1

Hi Lily......I've been on Letrozole for just over a year now. Up until now my S/E were hair thinning, nausea and weight loss. Now I'm starting to have some aches and pains in arms and shoulders and now in my back.....sometimes lower back and then it moves to my upper back. I increased my Vit D3 and Mg but my MO freaked when I told him how much I was taking. It did help however, but I have cut down to 3000IU of D3 .

Lily55

I wish i had weight loss! Worked hard to lose weight three years ago and could still lose another 14 lbs........gaining scares me.....

mary625

OK, this is probably a strange question, but I'm in a panic.  I somehow dropped my Letrozole bottle and spilled some pills into the sink and got water into the bottle.  The pills (little gold ones) started melting immediately.  I did what I could to retrieve them and put them on a paper towel to dry as I regard them as "gold."  I may have lost about 9 pills remaining in the bottle.  I called my insurer, and they said that my husband's employer does not provide coverage for lost, stolen or damaged medication, so therefore I have to wait until Sunday which was the monthly date for refill.  I'm wondering if I should try to take these 1/2 melted pills, if I can get them off of the paper towel or out of the bottle, skip until Sunday or go fork over however many dollars they want for 5 pills.  Has anyone had a similar experience and what did you do?  Thanks!!!!!! (P.S. been on Letrozole for a little over a year if that makes a difference in whether I could/should skip 5 days.)

justagirl

mary625: as a nurse, and having taken Letrozole for almost two years, I don't see a problem with continuing to take daily whatever part of a pill you have left. The covering is to cover the bad taste of the actual medication and for it to not start to dissolve until it's in your stomach so I would suggest take in morning with some water and then follow with a glass of milk. Try using a chopstick to get the stuck ones out of the bottle. And then again, I have read on here for the past two years where women take any where from two to 6 week breaks from the medication with their oncologists ok if the sides effects are wearing them down. It's up to you. But........if you still are undecided, call your oncologist!

Lily55

Take every other day or every 36 hours to eke out what you have.....til next prescriiption.....

Linda-Ranching-in-the-mTns

Mary -- (and all) -- I know why you refer to these pills as "gold" -- I was FLOORED when I found out the cost (Sams' Club was $600 for a 90-day supply -- CVS was $1400 for the same 90-day supply!

I freaked out! My insurance doesn't cover medications...

But when I came here (feeling very VERY scared and sorry-for-myself) several people told me to try COSTCO.

I couldn't believe it! only EIGHTEEN DOLLARS FOR A 90-DAY SUPPLY OF LETROZOLE!

So -- the bad news is that there are a LOT of pharmacies out there ripping off cancer patients.

But the GOOD news is that you could go to COSTCO all on your own and cough up EIGHTEEN dollars of your own hard-earned-cash for NINETY days of "gold".

I suggest we ALL switch to COSTCO anyway -- becasue why should we knowingly participate in the pharmacies ripping-off of the insurance companies? After all -- whatever the insurance company's costs are will eventually be reflected in what we pay for insurance.

So -- not so scarey after all!

Take your prescription to COSTCO, get brand new pills and keep on keeping on!

Linda

Eph3_12

a short hiatus won't hurt either.

mary625

Thanks for all the helpful advice.  I did get in touch with the onc (sometimes can take a day or two, so I posted here as well).  Short hiatus won't hurt, as said, or he said I could try to take what's left of the pills.  I can't tell you what in the h*ll happened to me last night but my arm jerked and there they went into the sink and onto a plate with water on it.  And I managed to get water into the bottle and affect those that remained there. 

Good to hear about COSTCO!  Will check that out.  I'm not getting very good service at the pharmacy anyway.  I hate to share this, but I pay nothing for my Femara.  I'm told that hubby's employer decided to cover at 100%.  I was scared to death after 2-3 months of not being charged thinking they'd come back at me at some later date, so I called.  Onc said he never heard of this before. 

justagirl

mary: maybe your husbands insurance company is paying the full cost of Femara in hopes to save money down the line by you taking it and not having a recurrence which would cost them mega $$$$...preventative medicine?  Stop the worry about them coming back to you for $$$. They made the decision! You don't need worry in your life.

HLB

Great advice about Costco! My mom goes there too. She was amazed. She gets a script for retin-a which is well over $100 and she paid something like $7 at costco! I love everything else in that store too!

gardengumby

Costco is my favorite. 

jittersmom

I wish we had a Costco by us!

artsee

You'll be fine by not taking it. Call your Dr. if you will feel better.

I picked up my last fill for Letrozole yesterday. For curiosity I called Walgreens for the cost of 30 pills.

$250.00 they told me. I then drove 25 minutes to pick up my prescription from Costco. $10.00. Can you believe it? Well worth the trip. How can some of these pharmacies look us in the eye?

I am happy however my 5 years are done in one month.



Artsee

She

Another femera newbie here, I'm starting May 1. I did 15 months of tamoxifen in 2001 but stopped, QOL issues. I sure hope femera is kinder to me. 17 years, 3 primaries and now a chest wall recurrence. It all sux.

chrissyb

Hi She, welcome to the thread. I was totally allergic to Tamoxifen, it put me in hospital with a heart attach so I was petrified about taking any of the AIs. Surprise, surprise I have virtually no SEs and and doing well on them.



Take a deep breath and take your little bomb and blast that BC out of existence!



Love n hugs. Chrissy

Linda-n3

She, I also have very minimal SEs from Femara, it's much much easier on me than the tamoxifen was. I was very surprised because I had read so much here from folks on it - just goes to show that those who have SEs will post more than those who do not, pretty much for ANY meds we are prescribed. Good luck!

Galsal

Holy COW...$18 for 90 day supply at Costco?  That's even cheaper than the $28 I pay getting them from the VA!!  Very nice.

BookWoman

Hi, I just started Letrozole on Wednesday so I thought I'd join this thread. It's probably been covered (I haven't read through the whoe thread) but how soon did SEs start for those of you who have SE?

gardengumby

For me - they started pretty much immediate and then started to dissapate - then Costco changed from the Mylan pill to the Cara pill at about 3 months, and the SE's that had dissapated recurred.  But what I've found is that they come and go.  A lot of the SE's I experience (the worst is severe leg aches) get worse if I expose myself to many allergens - it seems my body can handle allergens OR medicine, but not both.

(about Tamoxifen - I reacted HORRIBLY to it, the letrozole is much much MUCH easier for me)

Lily55

So you find the Mylan brand better as that is the one i have?

halfcan

I started Letrozole 10 days ago and so far there haven't been any side effects! Here in BC the prescription for this is covered by the cancer agency for the full 5 years! Must say it is a great way to do a huge drug trial!!! :-). My Letrozole is Sandoz brand. I hope things stay this way. I'm still dealing with chemo neuropathy in my feet and nasty discomfort from radiation hitting my esophagus. But not complaining, it's all worth it. Hope you all have a pain free weekend. It's raining and ugly out here.