Questions about Femara and pain

Hi, Alcie.

I dug a little deeper into the site, and this is what I found.  You can try this link:

http://www.drtms.net/NVSFemara/FemaraPOD/default.aspx

This is what they say about the card you can print out from that link:  Here’s how this FREE card works: Regardless if you are a self-payer or have a co-pay, this prescription discount card* allows you to pay only $10 for your 30-day prescriptions if you are eligible. Novartis Pharmaceuticals Corporation will pay the rest, up to a maximum of $800 in any 12 month period, toward your prescriptions.**

It's not a $10 off card.  You pay $10 as your part of the perscription.  They pay the rest.  You can use the card until you have maxed it out at $800.

I realize this is only gets you 800 dollars total, but it is better than nothing. 

Another website to visit for help with rx drugs is:

http://www.togetherrxaccess.com/Tx/jsp/home.jsp

This site helps with numerous perscription drugs.

I know this might not help you if you are going off the medication, but maybe it will help someone else.

I'm sorry you're having such terrible side effects from the medication, but maybe you could try another and have better results.  Tamoxifen or Arimidex, maybe?  I haven't taken any of the aromatase inhibitors, so I can't really say if there is a difference, but I know alot of the women who have had bone pain from taking them find that it gets better with time.

Wish I could be of more help!  And I wish I could just give you a gentle hug right now.  Cyber hugs will have to do.

Hugs...

BEV

Bev

Thanks, but in the small print that coupon is disallowed for those of us on Medicare.  And being on Medicare means that only the first $2800 of the price of medication is covered.  I have to pay the next $4500.

The other website is only for people with no insurance.  Same problem with Medicare.

I appreciate your effort.

Sue, I didn't even get to talk to the doc, only a nurse who said to go to a shrink and take antidepressants.  I don't tolerate any antidepressants - give me suicidal feelings.  The nurse said she'd never heard of pain from Femara.  I don't believe pain in bones, muscles and joints proves that the drug is working, only that it gives a nasty side effect.   The hot flashes might mean it's working.   I also don't believe the pain will go away with time.  I've been taking it for 11 months and it just keeps getting worse, so I don't believe it goes away.  At first it wasn't bad.  Now I take opioids for the pain and it's still breaking through.  I tried a 3 week "vacation", but pain didn't even lessen.  I only have a 20% chance of living another 7 years (calculated from a solid tumor + heart attack + age 65) and I dread living like this for that time.

Depression is 100% chance from what I have read post-op due to PTSD.  It goes away.  I recommend a local support group.  My radiation hit my stomach and a rib, also my lymphatic pathway on the left side causing axillary cording.

Bev
Thanks for the support.
I went to the oncologists office - 2 hours through horrible snow, accidents all over the place, including right in front of me! My BP was a little high by the time I got there.
I told the onc I couldn't tolerate more than taking Femara every other day and even that was making life not worthwhile living. No, I way not suicidal! But the Femara pain was getting as bad as the Arimidex pain, which I refused to take after only a month. So he put me on Aromasin. I was so exhausted after 1 1/2 hours driving home that I just collapsed and got the pills the next day.
First Aromasin pill was nearly as bad as the first Arimidex, which caused me to pass out. I had headache, severe nausea (scarey because I can't vomit since stomach surgery to pull my stomach out of my chest after car wreck), horrible muscle cramps in thighs, chest pain, and severe dizziness from low blood pressure to the point where I couldn't get off the couch long enough to get a phone across the room to call for help.
Second pill, today, much better taken with a large breakfast. Nausea a couple of hours later, but tolerable, dizziness, severe tinnitus which hasn't stopped, but other symptoms better. I'm hoping the muscle pain from the Femara will eventually subside, but this one can cause pain too. At least I have not had to take Vicodin for 2 days! :)


I've been informed of two reliable (according to people who have used them) places to get cheaper meds: Xubex.com in FL and Alldaychemist.com. I simply can't get help, because I am on Medicare, so I'm going to buy my meds wherever I have to. I'll try out Aromasin from my local pharmacist first for a month to see if it's any better.

Alternative is tamoxifen, but I have all my pieces-parts, and stroke and heart attack run in the family, so that is a fair-size risk. But I won't just keep taking pain meds for whatever life I have left!

Xen
Wow that's great news! Why then, do they put us on a one-size-fits-all dose? Can you give me a citation for the info? I will look on the Femara site. Is it all there?

I gave up on Femara, couldn't stand the pain. Was switched to Aromasin. Pain was incredibly worse and after three days i got trigger fingers! I've been off all AIs for a couple of months now. I can't use the computer mouse with my right hand, 3 fingers triggering there, one on right, having trouble typing. I'm scheduled for surgery to release trigger fingers next week. I've also been getting spinal injections for sciatica since on AIs. I also have gotten pinched nerves in my neck causing arm numbness.

I believe if you have preexisting conditions like arthritis the AIs will dramatically make it worse. Just a casual observation. I only have a tiny couple of spots of arthritis in my hands, but have had it in my spine. I didn't have serious problems until starting AIs.

I'll talk it over with my onc. I like being off everything, but I'm scared silly the cancer could come back or another one could pop up. I printed out your post to study,

Aha! I went back to the Femara website and found the pdf file we need to read at http://www.pharma.us.novartis.com/product/pi/pdf/Femara.pdf. I didn't yet find Xen's info about dissolving the pill in ethyl alcohol (make sure not to use rubbing alcohol!!!), but the info about .5 being effective is there. So again, why are we being fed 2.5 mg no matter our age or size???

I will discuss this with my onc. I don't think he's considered the study. I would go back on it if I didn't have to suffer so.

Hi, Matt. I've never taken either drug, so I don't speak from personal experience here. But I was wondering if your wife is being put on other drugs, as well? For instance, is she taking a taxane for treatment, such as Taxotere? This can cause joint pain. And if she is taking a biphosphonate, such as Zometa, these can, especially initially, cause bone and joint pain. So it may not be simply the switch from Femara to Tamoxifen that is causing the increase in pain. Just something else to consider. I know tamoxifen works differently from Femara, and it is often preferred over tamoxifen because it typically has fewer side effects.

Really sorry to hear about your wife's mets. We never like to hear that someone is having to tangle with breast cancer... especially a second (or third or fourth, as some of our member do) time around.

Hope this helps...
BEV

I've been taking Femara for two years now. The pain is still very much part of my daily life and i've accepted thatl.. but now i'm finding myself very weepy and my onc has me on a low dose anti depressant. that depresses me even more!

Has anyone been on this drug longer than two years??? do new side effects like this still come along after two years??

Any help would be appreciated.
thanks

 Hi Sisters,

       I just found this web site through a need to find answers to these awful pains I am having mild to severe, all over my body. I had read that a side effect along with bone loss and other symptoms, you can experiences in different parts of your body.

       I started Femara in August after being on Tomoxefen for nearly 3 years. In the last two weeks or so I am noticing pain I have never had before, in my hips, thighs, knees, that I find it hard to walk.

       In my arms, elbows, wrists, hands, especially worse in my top right arm when I reach up at a certain angle. ( I put that down to being my dominant arm) The pains feel like I have over walked, over exercised, over used these varies limbs. If I sit or lie somewhere and I don't move I have no pain. I also feel stiff, awkward, and move slower which frustrates and stresses me, in turn I get more hot flushes.

        You can put up with these affects for awhile without reacting emotionally, but it all wears you down when the side effects are at their worse and, you do react with tears, anger, you negative thoughts, words (even though you are a very positive, motivated person). because this is not what I want to be like, what I want to live with.

         I have a bone scan in a month or so ( they should be done at least once a year while on the drug) I will need to decide whether for my bones it is better to change therapy?

         I consider the alternative, cancer again, death, not being here for my loving husband, beautiful girls, ( they may end up with BC , like my mother before me, and I need to show them, as my Mum shows me still at 80 with BC for a second time), loving friends and family, my home, country, world, and again I feel stronger and willing to continue my fight to live.

         Ps. I am on GABAPENTIN to help me with my hot flushes.

                                                                              Take Care, Love

Hi barkyboys,
I appreciate you reply.
The reason they switched from Tomoxefen to Femara was that in all the studies done they have proof that it works better against the cancer coming back.
Mum was on Tomoxefen before her surgery and after her surgery sahe took it again and kept on it for another 12 years BC came back. Apparently after being on it for 5 years it can make the cancer return instead of stop it.
I was told the idea of changing meds was to shock it in case it thought it could grow back. Also that treatments and new ways of using them change much faster these days than they used too.
Gabapentin is used by people who have epileptic fits and I am able to tolerate it well.
I have been put on 2 different antidepressants and even vitamin E but by the 3rd day i feel dizzy and sick so they were stopped. If this didn't work they told me all they had left to try was injections into the nerves at the base of my neck to hopefully stop the flushes.
My husband would understand your husband really well, I was exactly the same.
I have told my Drs. and I will continue to do so and hopefully there will be new answers and help or the hot flushes wil end forever.
I wish you good things a long your life's journey too.
Take Care, Love Elizabeth.