FEMARA

marijen · December 2017

It’s the letrozole. It can cause carpal tunnel, tendinitis, joint pain, and trigger finger. I posted an article about it here a while back. I also took the article to my MO because she didn’t believe the letrozole caused my trigger finger. Six months I wore a thumb brace. Eventually I had so much foot pain and tendinitis to my heal, joint pain, and was getting pain in my wrist up my lower arm. Plus it affected my eyes. That’s when I had to quit.

2FUN · December 2017

marijen, what was happening with your eyes?

marijen · December 2017

Most of it is posted at AIs and blurry vision here, it’s only two pages:

https://community.breastcancer.org/forum/78/topics...

Been off letrozole over fourth months, the blurriness is not better, but not worse.

marijen · December 2017

I was on two years and three months. The first two years were manageable. Then everything took a dive. Eyesight is too precious

NotBrokenJustBent · December 2017

Marijen, I wonder how long Femara stays in the system. I have heard it provides long term residual effect but my MO took me off it for 3 weeks after being on it for 3 1/2 years and said that should be long enough to know if my issues were related to the drug.

marijen · December 2017

But you are back on it right? So were your issues Femara? My body pain is better but not gone. I was feeling crippled too.I think some of the pain is permanent, as well as the eye damage. Time will tell. Next opthamology appointment in February. I don't think it hurts to take a break now and then.

NotBrokenJustBent · December 2017

Marijen, I went back on it and am going for the 5 years. I have one more to go. I have some SEs, mostly vanity issues but the reason for going off was EXTREME fatigue. It started with chemo but immediately after chemo I started the blockers and has never improved. It is crippling and I am able to do very little in a given day. In going off for that 3 weeks MO said that the fatigue is not a SE, but still I wonder.

marijen · December 2017

I don’t think three weeks is enough. I had a really bad flare up after being off a month and a half. It lasted for weeks. For fatigue I have found that CQ10 helps. I hope you are getting 30 min. Of exercise everyday?

NotBrokenJustBent · December 2017

I take the CoQ10 but no, I am not exercising. I have chronic back problems and that was the other reason for going off the blockers for that 3 weeks in that I believe back issues were exacerbated with the Femara. Marijen, I have said it before but no way would I sacrifice my eyesight by taking the blockers. I hope you see improvement in the near future.

marijen · December 2017

Thank you NBJB. I think the worst part of all this is the constant wondering if cancer cells are loose and growing somewhere and everywhere. I stll have pain from surgery too. Back pain also.

NotBrokenJustBent · December 2017

Marijen, I share your fear about the cells. That is why I have chosen to stay on the dang drugs for now but not a day goes by that I don't question this decision. You had no choose given your circumstances.

grandma3X · December 2017

Femara has a half life of about 48 hours, so it is reduced to about half the level in your blood stream in 2 days, them to 1/4 the level in 4 days, 1/8 in 6 days, 1/16th in 8 days, etc. At three weeks, it will be roughly 1/1000th the original level, if I did my math right.

NotBrokenJustBent · December 2017

Grandma, I have read that it has a residual effect as to offering protection for BC for a few years. That may have just been read here on one of these forums and so not based on good authority. I would hope that it would be out of the system as you have suggested. Somehow that makes me feel it is less toxic. Thanks for your input.

marijen · December 2017

Yes but that doesn't account for cell/body damage, some that can be permanent like neuropathy, bone density, arthritis, and eye damage. The body needs time to heal as well.

Jumpship · December 2017

I had blurry vision with Tamoxifen so I changed manufacturers and it helped. Vision is a must! I've noticed that the television channel guide is fuzzy but I just thought it was too early in the morning. Now I'll pay attention . A lot more difficult to get a different generic of letroxole here. For what it's worth, acupuncture helped with trigger thumb

marijen · December 2017

Blurriness and damage to the eyes can be two different things. You can read the studies and articles at AIs and blurry vision.

2FUN · December 2017

thx for the article link.

I thought I read a paper talking about a rebound effect from going off AI's for short periods of time, and it might not be a good practice. I gotta find that article

gkbuser · December 2017

wow grandma, That 1/2 life information! When I think about it, if we keep taking daily doses before out body has cleared out even 1/2 of the last dose and we keep doing that for 5 years......seems like it would really be building up high levels in our bodies. Has anyone had an oncotype DX then been on letrozole intead of tamox? My oncotype DX report says that the risk of recurrence that they give you is based on someone being on tamox for 5 years and not applicable to other scenarios. I am wondering because I am on Zoladex and letrozole for 5 years instead of Tamox.

gkbuser · December 2017

Marijen, I also have the fear that a cell here or there got into my bloodstream during surgery and is hanging out somewhere waiting for me to go off the meds. I try not to worry about it too much. I hope that my body would identify it as not normal and destroy it or it will just die from lack of estrogen to grow. Interestingly enough the breast cancer center I go to at the University of Iowa has a clinical trial right now where they are looking at the effects of a drug called Vandetanib pre op. It is a chemotherapy that is used to treat thyroid cancer. Patients take it orally for 10 days prior to surgery so the medication is in their system at the time of the surgery. It will be interesting to see if something like that will kill stray cells and decrease long term recurrence. If it has positve results we may see this type of thing as a standard of care in the future. Unfortunately I was 1 day late in trying to sign up so couldn't do it. In the meantime lets claim full healing!

marijen · December 2017

Luckily Hope is in great supply! And that is why we have to keep our microenvironment antagonistic to stray cancer cells. Like a garden without weeds.

The chemotherapy is for primary thyroid cancer or breast cancer that has travelled or both?

I read about rebound effect too and I think I posted the article SOMEWHERE, I don't know where now. There "might" be a rush of estrogen. I think I experienced that when I stopped Letrozole. Not sure since no estrogen tests for me. I wish I had gotten them though.

gkbuser · December 2017

Marijen, It is used for a certain type of primary thyroid cancer (not breast cancer or breast cancer that has spread), but the clinical trial is looking at how it may effect breast cancer if taken pre operatively. It will be interesting.

marijen · December 2017

That's really good to know gkbuser. Thx. Do you know the name of the chemotherapy? I meet with the Thyroid surgeon in Jan just in case I have thyroid cancer. Two nodules....

windingshores · December 2017

When I go off Femara, I am going to go off very slowly. In fact I might work down to half a dose and take that for a few years. I don't think it is a good idea to just stop, because the body responds in interesting ways and it makes sense that the estrogen would "rush in."

gkbuser · December 2017

I hope I made it clear that this is a clinical trial and not standard of care at all. Vandetanib it is a pill and used to treat advanced medullary thyroid cancers which are pretty rare (about 5-10% of thyroid cancers). I also happen to be an ENT nurse at the U of Iowa. Please keep us informed. Hopefully they are just benign nodules that they will watch yearly with ultrasounds.

marijen · December 2017

Thank you gkbuser, maybe I didn't read back far enough. Sorry. Yes in a few weeks I will be back here to let you know the latest.

grandma3X · December 2017

gkbuser - it takes a few weeks for letrozole to build up in our system to achieve maximum effectiveness when we first start taking it. It is continuously metabolized so we have to take it every day to maintain the level of effectiveness. It’s kind of like an hourglass - the sand drains down to the bottom glass vessel so we must put in more at the top every day to keep the level constant.
If you are interested in reading more, Google “letrozole pharmacokinetics”

Best wishes!

dlk617 · December 2017

HI!!! Everyone,

I'm struggling with taking hormone therapy. I started Tamoxifen for a short time a few months ago, but didn't respond well. We then found out I was definitely in menopause as per chemo, so I was switched to Femara. I started it for a bit, but was having every awful side effect possible - brain fog, joint pain, awful stomach/gas pains- basically every bad side effect possible. I let my oconlogist know and she let me take a break. I decided to give it another shot a little over a month ago.. This time side effects were even worse... I suffer from depression to begin with, so on top of being severely depressed, I had all of the same side effects again including weight gain and feeling like I'm bloated around my stomach all the time.. I can't think straight and can barely do my job or present because I can't keep a thought in my head.. This is really affecting my quality of life and not sure if my quality or quantity is more important.

I really don't want to stay on hormone therapy- I always had issues with birth control pills and anything hormone related.. Not sure if my diagnosis/treatment will show up below (even though I have set to public).. but basically- I had 2 different types of bc in left breast - 1. er- and the other er +, did AC/T 8 treatments, double mastectomy and reconstruction. (my ER+ is 95% driven, so I know I my oncologist will not be happy with me if I say I don't want to take) If anyone has any suggestions.. from what I've read it appears there are plenty of awful side effects from these drugs (despite trying to find some "positive" stories).. Please feel free to point me in any direction that might help me. Thanks so much in advance!

Oh and I'm 45 years old dx at 43 years old.

DK

gkbuser · December 2017

dlk, So sorry you are having all those side effects. I always thought getting through my surgery and radiation would be the hardest, but now I know that the real challenge is staying on the anti-hormonal therapy. Everyone is different as to how they react to things. Only you can make the decision of what to do about the medication. Some women have chosen to abandon ship with the meds, some tough it out. As far as the brain fog and depression - do you feel that is better off the medication for sure? The reason I say this is that sometimes that can be from menopause itself (the senior moments) rather than the medication. Also women respond to different medications differently. I have been on letrozole for 9 months - I was about ready to give up when my doctor told me sometimes that side effects ease up with time. Sure enough just about the time she told me that (which was about 3 months ago) things did seem to get a little better. Also, she offered that if they didn't, she could change me to a different A I inhibitor like anastrozole or exemestane. Now, they are all the same type of meds so you may still have the side effects, but it may be worth a try before you give up. My friend started letrozole about the same time as me. Has had some hair thinning - no joint pain at all. I have terrible joint pain, but no hair thinning yet. so, everyone is different. My MO said she also has women that take it every other day instead of everyday. She also told me if I start to feel down that Celexa might help. Hopefully you have an oncologist you trust and like. Without an appt you could maybe just make a call and let her know you are getting discouraged and would like to talk about alternatives to just stopping the medication. I don't know if you take anything for depression, but st. johns wart might help and omega 3s can help with focus and brain issues also. I also find that doing yoga (I do it from home with a DVD or amazon prime streaming) and taking time for me with nice baths, and doing activities I enjoy has helped. In the end do what is right for you, but if you have a desire to keep trying maybe try some of the alternative medicines, different A I or try toughing it out for like 6 months or so and see if the SE ease up a bit. Good Luck and keep us informed.

dlk617 · December 2017

Thank you so much for responding. I have been on/off depression meds since the birth of my daughter 15 years ago (I suffered from post partum), but have always had PMS... I'm hoping to start working out again, as that seems to help, but it's been almost impossible trying to get motivated. I need to try and snap out of it. You're right a lot of this could also be menopause.. why I decided to give another try, but then some of the other things started coming back. I love my oncologist because she's brilliant and killed my cancer, but for post treatment, I'm not feeling as though my symptoms are being taken seriously. I'm really not a complainer and made it through AC/T without much complaint, but this is kicking my butt. You're also right also about thinking chemo and surgery would be the worst of it. So nice to know I'm not the only one who feels like this... Thanks again for taking the time. Best,

Diana

Taco1946 · December 2017

dlk617 - I'm sorry you are having such a hard time with the AI's. I know only about half us even finish the 5 years, at least in part because of the SE's. I started on arimidex in May and have already been switched to femara. I also found that which generic of the arimidex made a difference so I hope you can work with your MO until you find something that works. Have you tried keeping some sort of journal to share with her. I also hope you are working with your mental health practitioner. You have had a lot of stress in the last 18 months and many of us struggle with PTSD. Cancer plus menopause is a lot! And the holidays are a down time for many too. I know I feel better when I get off the couch although once again I have gotten away from my "stretch and flex class". Can you find an exercise buddy, even if it's only for a short walk. Even my dog lets me know when it's my turn rather than my DH to be "the walker."

FEMARA

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