Femara - To take or not to take...

Hi Ally,

Well, after taking femera for a week I had a rash on my arms and legs, and a terrible itch in my groin and I generally felt terrible so I stopped taking it.  I have now finished my radiotherapy treatment and am due to see my oncologist next week.  I have spent some time reading about the side effects of these drugs and have discussed this with my husband at some length and decided that I will not take femera again.  I may try another option if the oncologist suggests it but if I still get bad side effects I will stop that as well.  I cannot see any reason to take a medication that can decrease my quality of life with only, according to the statistics, a small reduction in the risk of the cancer returning. Regardless of my decision, you need to discuss this with your partner, family, GP or other person you can confide in and come to your own decision. Find out as much as you can about the drugs and their side effects and don't be afraid to ask your GP or oncologist about the percentages that your risks are reduced based on your cancer figures. I would be interested in your eventual decision if you feel you want to let me know.  I wish you well in your fight and hope that you come through this challenging ordeal.

As mentioned previously I had surgery for breast cancer Dec 2011 and was put on Femara Dec 2011 and was meant to be on it for five years - I stopped taking after 5 months due to the horrible side effects.  I did my research and decided that, for me, the advantages did not outway the disadvantages, and if I keep ensuring I get regular check ups I should be ok.  The side effects were so awful and were interfering with my work in breeding and training horses.  I was to the stage that I could not even open a can of coke let alone break in a young horse.  My joints have improved by my hands are still not good with one finger permanently disabled.  I never suffered joint pain and other awful side effects before Femara. I will never take this drug again. 

Many thanks Ally for sending a reply.  I appreciate it.  Now there is one more very simple question..I just can't find how you put a picture on my profile.  I am not a novis at such things and I just can't seem to work this one out and would be a happy person if you can help.

I do wonder if pre menopause people have different side effects to post menopause women.  I am post menopause.  Looking at USA forums so many had blurred vision which I would not tolerate.

I feel better this week...lousy last week. Hope the good continues.

Thanks for keeping in contact and I will be back if I have other problems..OR more questions.  Thanks for advising Femara had been in Aus for 5 years.  The Gov. Cancer site should be updated as the last one was in 2009 and still NO hormone treatment was mentioned!

Keep well

Glenis

I live in the United States but had to give an Australian post code..but at least I got in :)  My understanding of the two drugs is that Tamoxifen is for when you are pre-menopause and Femara is post-menopause, that is what two oncologist have told me.  Please research this for whichever one you are in.  Very important because they work differently.

Thanks Ally..I just want to add the picture which you have done and can't find out how to do it.

I am in Australia, Victoria in fact..where are you?

so you have the dreaded heaches as well.  Mine last on and off for 2 weeks. I HATE FEMARA like you do too that is why it is great to find this forum.  We all agree..well most.  I am feeling great this week not so last week.  Have yu had dizziness with the headaches like I do.  Been told when getting out of bed when dizzy to sit on the edge of the bed and turn head to the left...dizzy goes.  Then I stand up..

Take care

Glenis

Glenis.... I find this site a little frustrating too. are you a face book user? If you are why not add me? and at least we can chat more freely?Ally Gill Western Australia..... Looking for ward to finding you xx

Wow Tonya.... thats pretty awful. I am settling into the femara now.... Been on it for 2 mth, apart from the dizzy spells Im not too bad, .

Flaxseed? I havent heard of that being helpful. I know you can get bread with it in there already would that be any benefit if taken that way?

Oh this thing is so awful, I feel like I am just waiting for the next stage to happen.... sitting on a time bomb... I hate it!

Ally

Thank goodness I  got in this do mornrng and thanks so much Tonya for your kind message. 

  Yes, I thought after I don't think I saved it so will try again and hope for the best.

 Gee you really had a tough time Tanya and thanks for sharing. Yes, I know of Flaxseed and use the oil even for my dog.

I am a great believer in natural things rather than drugs and I have just got a list of things to take from my Naturopath but I will not go off Femara..you have taught me that...while taking them. She also e-mailed me

 a 17 page document. ...Amazing the connection between thyroid, breast cancer and prostrate cancer. 

 Having so much trouble typing this will go out and come in again. Hope this makes sense!!  Glenis xx

Just wanted to agree with you Tonya on stress levels..does do damage. Very interesting indeed..I did have some stress before my diagnoses. Yes, Drs and Oncologists do not want to know about side effects OR natural products.  I did wonder what Tamoxifen was like as in side effects.

I have been on Femara going on 10 months now and I had 'rolling side effects'..each one would last about 2 weeks and another one would pop up.  I got very teary then get very angry just lately.. so could not talk to Drs without bursting into tears.  Last week I felt good as in this week no headaches, tingles etc etc I am taking Schuessler Salts..all natural and is a nerve nutrient..so hope they are the reason I feel better. My friend swars by them and uses a variety of them.  By the way I have D.C.I.S cancer High Grade. My sister had her breast removed about 15 years ago and has never had a problem since. I thought mine was the lowest on the list of breast cancer..

My picture worked BUT I cheated I do not have a recent one that one is over 20 years old!!!  I had hair then and I don't have much now thanks t Femara and Thyroxine for the thyroid...  I should fill in more details for my profile I suppose...

Re my hair..don't think I have read anyone having thining of hair like I have.  Of course having thyroid problems makes it worse. I am so glad you are into natural products too.  The docment I am talking about that I have from my naturopath is called IODINE..Bring back the Universal Nutrient Medicine.  Gosh it points out the importance of Iodine in the body.  I have 17 pages of the evidence. My Dr would not even hear of changing Femara and will not listen to side effects! I do not see the Oncologist until Nov. and that is why I am getting as much information as possible to 'throw' at him! Did you ever get a report from your Dr on what was done when they operated? Dr. gets a copy but I didn't.  I rang up and requested a report so I know what was done.  If better arrive today otherwise I will be ringing again...

I was afraid I was missing messages as they kept coming up in my e-mail in box.  I do hope I have it right now..

Take care

Glenis

Hello Deirdre,

Strange you and Cherry have posted the same sort of thing today about not going on Femara.. You got more information from your Drs than I did..I did not get anything and will not comment on the side effects.  From the information you all got from your Drs I am making a list to ask my Prof. when I see him in November. So true in what you said about no long term trials.  It was on the news recently that a wonderful woman is putting her efforts into making a Smart Pill..for all the women taking these nasty drugs like Femara.  The little I know about it is that it will only attack the bad cells and not harm anything else. Like all this sort of things it will probably take years before it is on the market..

It is such a hard decision to make and I have been on Femara for 12 months this month

Glenis

Hi Deb,

You have the same headaches I had which last approx. 2 1/2 weeks AND on the left side where i have never had headaches before.  I am now going to the Dr this morning a I have a bone problem with right arm..don't thinl it could be results of taking Femara though but???

You will be happy to know I have been on it 13 months and the side effects have not come back for a quite a few m onths.  So there is hope!!!!?? I noticed they hit all at once when I started it then one at a time.  By the way my emotions are very up and down too..

All the best

G

Hi Girls, I'm still not confident in this type of discussion, but really good to hear all your opinions.  I saw the hospital to see if I could stop Femara and try another.  I could sort of put up with the hand/wrist pain, stabbing headaches, Hot flushes (especially the night ones, wet pillow and sheets).  Taking Panadol Osteo helped marginally.  The Surgeon didn't bother attending, a had a beginner doctor who knew very little, but called the breast nurse in so he to check my breasts (man-handle, more like it).  At least the Breast nurse knew what I was talking about.  She saw the state of my knee when I tried to walk.  She suggested I stop Femara for a month, then return to outpatients again, and maybe start on Arimadex.  I too question the need to take these drugs and hope I get to see a more experienced doc next time.  My GP is lovely and trys to help but she believes the cancer experts should make decision.  Thanks again ladies.  Best of luck to you all.  Cherry.