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Femara (letrozole) for breast cancer

Gale7
Posts: 12
Joined: Jun 2004

Is there anyone over 55 who is taking Femara for treatment who is experiencing severe joint pain as similar to arthritis as a side effect? What does your doctor tell you. And how bad is the pain. I have been taking it one month and I have days of very severe joint pain. Help??

marbleslab
Posts: 24
Joined: May 2004

I'm 54 and have to take Celebrex for joint pain due to the Arimidex I'm taking. I take one in a.m. and one in p.m. Tried to go down to one a day and the pain was too bad. If you're not on this, you might talk with your doctor about taking it. It's wonderful.
Marla

Gale7
Posts: 12
Joined: Jun 2004

Do you have any side effects from the Celebres?

Gale7
Posts: 12
Joined: Jun 2004

Thank you Marla. Do you have any side effects from the Celebrex? Gale7

judiek
Posts: 71
Joined: Feb 2004

Gale,

I take bextra for my joint pain...I'm on taxol. Bextra is in the cellebrex and vioxx family...it's the newest in that family. It has helped me with no side effects

Warmly

Judie

Discovered lump Sep 2002 (mammo didn't pick it up after I found it) Scary!
Dx Oct 2002-just turned 41
IDC, Stage 2b, grade 3/3-very aggressive
3cm, lumpectomy, clean margins
er/pr positive, her2 neg
2/25 nodes with cancer
Nov 2002-March 2003 -FEC (Flourorical, Epirubicin, Cytoxen)
March 2003 started tamoxifen
May 2003 finished rads (33 tx)
June 2003 ct/pet scan-clean
Did 3 month check ups/lab work
Dec 2003 complete hysterectomy
Jan 2004 extensive mets to both lungs and liver/labs normal
Jan 2004Stopped tamoxifen
Feb to Current- clinical trial of avastin and taxol
Apr 2004-CT -significant shrinkage on all tumors/pleural effusion gone
June 2004-CT -all liver lesions decreased in size/ lung mets vanished.

jeancmici
Posts: 682
Joined: Feb 2001

Judie,

>>Dec 2003 complete hysterectomy

Jan 2004 extensive mets to both lungs and liver/labs normal

That must have been some blow to have barely recovered from hysterectomy and find mets. My labs were normal too - how did you find it so soon after hysterectomy.

We need to pray for each other. the old liver is a stickler - my onco never heard of one lobe responding to chemo - only one lesion was there - other lobe with six lesions con't to grow! I THINK he hates to see me - I present him with so many atypical results.

Jean
Thank you for all your kind messages and good thoughts - you are in my thoughts too.

Gale7
Posts: 12
Joined: Jun 2004

HI Judie: Thanks for answering. I am so pleased things are seeming to go better for you. I mostly am concerned with the joint pain from Femara and wondered if it gets any better. You can read my response to Gramma 44 and get a profile on my disease if you want to. I hope to hear specifically about your joint pain pattern. Thanks so much for answering. Gale 7

Gramma44
Posts: 28
Joined: Jun 2004

Hi Gale. I am turning 60 next week and I have had some arthritis stiffness for years but have long wondered if the severity of pain I am having now is due to post-cancer drugs. My lumpectomy was in May 2001, followed by six weeks of radiation and 6 mos of light chemo (I was Stage 1, estrogen positive). I was put on Tamoxifen in Feb of 2002 and in May of this year was switched to Femara. On both drugs I have had a lot of joint pain and two episodes of hardly being able to walk for close to a week with pain in all joints (once while on Tamoxifen and once since starting Femara). Those were the bad days - daily I just have annoying pain. I have been on Vioxx, one per day, for about a year. Today I saw a rheumatologist who tells me that Tamoxifen can definitely cause joint pain but hadn't heard of Femara. He also tells me that Vioxx won't help osteoarthritis (news to me!) and that I just need pain meds like Darvocet which scares me because I don't want to take anything that might possibly be addictive. Does anyone have any advice for me? I haven't talked to my onc yet about this but do intend to call him soon.

Sheryl

Gale7
Posts: 12
Joined: Jun 2004

Hi Gramma 44: I am Gale 7. I am 63. I had a lumpectomy-stage I and no chemo and no lymph node involvement. But I do have the genetic predisposition for breast and ovarian cancer so they put me on Femara after radiation treatment. I do have amazing arthritic pain in my joints. Two days ago I could hardly walk and took one ibuprofen which helped immensely. I am much better but I am not taking ibuprofen or any drug and I will only take it on occasion if absolutely necessary. I just wondered if Femara is worth it even though it shows about 40% to 50% no return of cancer in postmenapausal women. What is your opinion and what type of cancer and lymph node involvement did you have? Thanks for answering.

Gramma44
Posts: 28
Joined: Jun 2004

Hi Gale. I was post-menopausal and my cancer was stage 1, invasive lobular, with NO lymph node involvement, however my onc, and the tumor board at our hospital, recommended radiation and low dose chemo. I'm afraid I really don't have any input for you on the Femara and if anyone reading this has input I'd be glad to get some info. I was just switched to Femara in May after two years on Tamoxifen and haven't spent a lot of time researching it. I've kind of put my trust in my onc. As for the joint pain I know that it is a side effect of both Tamoxifen and Femara and for the life of me, I can't remember if my joint problems got worse when I started on the Tamox or before that but it has definitely become worse since then but then it could be aging too. I have also found that my hot flashes have become worse on the Femara but am hoping that levels off as it did eventually with Tamox. The good news is I'm sleeping again which was a problem for me on the Tamoxifen. If you can care for your joint pain with ibuprofen then you are doing fine. Being on these post-cancer drugs is frustrating because of all they do to our bodies, but I'm afraid to quit because I don't want the cancer to come back. I think it's a personal choice to some extent. My onc told me that some of his patients had quit the Femara because of flu-like symptoms, which I take to be joint pain. Right now I'm dealing with it - and NOT taking the pain pills recommended by the rheumatologist. I'm waiting for my regular doctor to get back from vacation to talk to him first on that issue.

Thank you for sharing your views with me and good luck to you.

Gale7
Posts: 12
Joined: Jun 2004

Hi Gramma44: Thank you so much for sharing your information with me. Your diagnosis and treatment sound very similar to mine except that my team did not recommend chemo. It is comforting to know that the arithritic pain is common place and I am not the only one. I did have some knee pain in the past and I do not have the pain everyday. But when it hits it is in my wrists, knees, ankles, etc and is very rough. As I said I am trying not to take anything but only when it hits really hard I do take an Ibuprofen and it seems to help greatly.

I thought about quitting the Femara, too. But the statistics against returning cancer are too good to quit. So for the meantime I will try to face the pain. By the way, the hot flashes after 6 weeks are lessening somewhat. They were pretty rough too. I also seem to be a bit more emotional. Have you had any changes like this? Thanks again for answering. Have a good 4th. Gale7

Gramma44
Posts: 28
Joined: Jun 2004

Hi Gale. Your pain sounds a lot like what I've had happen to me twice between March and May (once while still on Tamoxifen and again five days after I'd started on the Femara), where it hits all joints. It would start in my knee and then within a few days be in all my joints just like yours - wrists, ankles, etc, plus I also have a lot of arthritis in my toes. The more I communicate with you the more I feel this is more related to the Tamoxifen and Femara than the actual arthritis especially if you had no problems prior to Femara, although I was on Tamoxifen for two years before having a major pain problem like this. Since you and I are close in age it could also be age related in addition to the drugs. As for being emotional, yes that is definitely a side-effect I think. I also find myself having tremendous mood-swings since i started on Tamoxifen and that hasn't changed either on the Femara. I keep blaming that on lack of hormones which obviously we can do nothing about. I'm glad to hear your hot flashes did settle down after a while. Mine did the same with the Tamoxifen but I think it took more like six months, but am hopeful the same will happen with the Femara. Good luck with your meds and have a nice 4th!! I am so glad I found this website - I didn't realize it was here until my husband and I participated in the Relay for Life in June here in our little town and I saw a sign on the track about the survivor's network. It's really nice sharing and getting answers to questions I've had. Reading through a lot of these messages has been really helpful to me. I have a number of friends who've had breast cancer but none have had the same situation as mine. One last thing, my daughter and her bestfriend are walking in the Avon Walk for Breast Cancer in San Francisco next weekend and we are very proud of her for doing that for me and all the other women we know who have had breast cancer. It is a 40 mile, two day walk and they had to raise a lot of money to participate. Anyway, if you are a praying person, keep a good thought and say a prayer for them as they take this walk in order to help all of us!

Gale7
Posts: 12
Joined: Jun 2004

Hi Gramma 44: Thanks again for replying. It sounds as though your daughter is a great person and I wish her good luck on her run.
My daughter just walked in Chicago for breast cancer and raised some funds.
Your answer was very helpful. Since we are in the same age group and have relatively the same type of cancer I will take the liberty of asking you to share a few more things. Do you get tired from the Femara? I am trying to decide whether the tired part-usually comes in the late afternoon- is caused by the month of radiation in April and if I am still having residual effects or if it is a result of the Femara and the hormonal shut down work my body is having to do. Do you have any tiredness? How often and how severe if you do?

Also, do you have any weight gain? I gained 5 pounds within weeks of starting Femara. The doctor said I would not gain any weight but I did and I eat very healthily and walk about 3 miles everyday. Any thoughts on this and do you know any other women who are on Femara and who did or did not gain weight? Thanks for sharing your ideas on this. Gale 7

Gramma44
Posts: 28
Joined: Jun 2004

Hi Gale7. Thanks for sharing info with me. And my congratulations to your daughter for walking for breast cancer too! To answer your questions I do get tired and have since cancer treatment 2 1/2 years ago. Seems like I'm always dragging but blood work is all normal so I tend to think that meds are causing most of it. Your tiredness could still be from your radiation treatments. How often are you seeing your onc? Are your blood counts ok? As for weight gain, I did gain 10 pounds immediately on the Tamoxifen, but have been successful on a weight loss program for the first time in 2 years now that I'm on Femara, so I can't say that I've put weight on because of Femara but I know it's possible. Have you ever been to the website livingbeyondbreastcancer.com? My neighbor, also a survivor, told me about it and I recently printed out a transcript of a teleconference she had listened to on Aromatase inhibitors on May 12 (you'll need the date to find it). Here is the address that gets you there: http://livingbeyondbreastcancer.com/conferences.html#20040512
You can find many different topics they've discussed and print them out. I kind of skimmed it today and found it informative (it's 33 pages long!!). Let me know if you learn anything new from it.

Sheryl

Gale7
Posts: 12
Joined: Jun 2004

Gramma44 Again, thanks so much for your reply. Especially for the tiredness and weight info. I think my weight gain may be from very little estrogen left which is known to help weight leave the body and also from tiredness which causes more rest and less activity. Your kindness in replying so sincerely has truly helped me. I will go to that website and checkout that conversation you messaged me about. Many heartfelt thanks again and I hope your day goes beautifully!

Gale7
Posts: 12
Joined: Jun 2004

Gramma 44: An afterthought, I would not take anything that could be addictive. It is better to put up with a little pain. Gale 7

Bellstar
Posts: 1
Joined: Jan 2013

I had my left breast removed on nov 8th 2012, had a heart attack when surgery was being done, the attack is one that will repair it self with time, thank goodness and mostly my creator.

Then I had a awful time healing, a hematoma for 9 weeks.

My oncolagist recommed 12 chemo treatment, my cancer was the size of a .50 cent piece, out of 11 nodes one came back positive. Refused chemo now the 12 week window has passed and chemo now would be no use.

My doctor then said my mortality rate within the next 10 years was 30% of the cancer recurring, I'm 68, do not want alot more pain, would like some quality time so refusing letrazole to.

I have severe artheritis, I've heard the letrazole is bad for joint pain, blood clots, weight gain  and many more side effects.

What I'm asking here is for other people opinions, still trying to make up mind about antiestrogen blockers, thanks for reading this God Bless

Rague
Posts: 3600
Joined: Aug 2009

Pulling up VERY old theads that have nothing current on them usually does not get you many responses.  Ask you questions in a new thread.

I have been on Femara/letrozole (Femara was not available in the generic letrozole when I started it) for 3 yrs early next month.   I've had no problems with it.  I have athritis in my upper back - and it has progressed a bit but in 3 yrs it would have anyway.   Blood clots - never had one.  Wieght gain - I've lost weight.  

We are each unique - there is no reason to believe that anything someone else's experienced is what you will experience.

WInyan - The Power Within

Susan

Bonnie12
Posts: 4
Joined: Feb 2013

Hi Gale7,  I am sorry that you have expereinced difficulty with the Femara.  I have tryed all three of the Aromatase Inhibitors, including Arimadex and Femora, and am currently on Aromasin.  Basically I feel awful on all of them.  I am nearing my four year mark in August and considering whether the quality of life is more important.  My knees and ankles, sometimes my upper back and feet ache and are stiff.  I hate it, but I hate cancer more.  I am afraid to stop and I am afraid not to because this is ruining the quality of my life.  What to do.  Everyday I ponder it.  Sometimes I will skip a day and for a few hours I feel almost normal again.  Ahhh, what a wonderful feeling I have been missing all these years.  Know you are not alone.  Love and Blessings. Bonnie12

Caroclara
Posts: 2
Joined: Oct 2012

Hi Bonnie, I was looking for exactly what you wrote in your note. I tried Femara for a week and quit.  I couldn't stand how it made me feel. I see my doctor in two weeks.  I don't know how you can do this.  My back and all my joints were so painful and I felt awful, had a headache, couldn't sleep and felt sick.  Quality of life vs the risk.  When the oncologist said, Femara is even more powerful than the chemo, I thought,"why did I have the chemo then?"  I wish there was another way, but I'm sure you've investigated them all.  I had hoped that maybe after being on it for a while, that the symptoms would go away, but apparently not.Thanks for sharing your experience.  Caroclara

Bonnie12
Posts: 4
Joined: Feb 2013

Hi Gale7,  I am sorry that you have expereinced difficulty with the Femara.  I have tryed all three of the Aromatase Inhibitors, including Arimadex and Femora, and am currently on Aromasin.  Basically I feel awful on all of them.  I am nearing my four year mark in August and considering whether the quality of life is more important.  My knees and ankles, sometimes my upper back and feet ache and are stiff.  I hate it, but I hate cancer more.  I am afraid to stop and I am afraid not to because this is ruining the quality of my life.  What to do.  Everyday I ponder it.  Sometimes I will skip a day and for a few hours I feel almost normal again.  Ahhh, what a wonderful feeling I have been missing all these years.  Know you are not alone.  Love and Blessings. Bonnie12

Bonnie12
Posts: 4
Joined: Feb 2013

Hi Gale7,  I am sorry that you have expereinced difficulty with the Femara.  I have tryed all three of the Aromatase Inhibitors, including Arimadex and Femora, and am currently on Aromasin.  Basically I feel awful on all of them.  I am nearing my four year mark in August and considering whether the quality of life is more important.  My knees and ankles, sometimes my upper back and feet ache and are stiff.  I hate it, but I hate cancer more.  I am afraid to stop and I am afraid not to because this is ruining the quality of my life.  What to do.  Everyday I ponder it.  Sometimes I will skip a day and for a few hours I feel almost normal again.  Ahhh, what a wonderful feeling I have been missing all these years.  Know you are not alone.  Love and Blessings. Bonnie12

Bonnie12
Posts: 4
Joined: Feb 2013

Hi Gale7,  I am sorry that you have expereinced difficulty with the Femara.  I have tryed all three of the Aromatase Inhibitors, including Arimadex and Femora, and am currently on Aromasin.  Basically I feel awful on all of them.  I am nearing my four year mark in August and considering whether the quality of life is more important.  My knees and ankles, sometimes my upper back and feet ache and are stiff.  I hate it, but I hate cancer more.  I am afraid to stop and I am afraid not to because this is ruining the quality of my life.  What to do.  Everyday I ponder it.  Sometimes I will skip a day and for a few hours I feel almost normal again.  Ahhh, what a wonderful feeling I have been missing all these years.  Know you are not alone.  Love and Blessings. Bonnie12

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Bonnie,

Watch for the dates of the posts.  This Gale7 hasn't been posting on this discussion board since 2008.  It is better to start a new post than go back reviving old ones.

Best,

 

Doris

Caroclara
Posts: 2
Joined: Oct 2012

I'm 67 and took Femara for 1 week, I couldn't stand it. Headache, couldn't sleep, terrible joint pain, dizzy, feeling awful.  Is supposed to get better with time?  Are there other options?  After going through Chemo and radiation, I've had it with feeling lousy.

Don't mean to sound like a winer, but I'm just tired.  Thanks to anyone who can help.

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