FEMARA
Comments
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Hi Annmarie and welcome to BCO. I'm one of the few who are allergic to Tamoxifen so I can't help you with problems it may cause. It seems that all the anti-hormonal drugs have a propensity to cause us problems one way or another and a thickening cervix and uterus are just two. Sure hope your results are of the good kind!!!
Love n hugs. Chrissy
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Thanks for the input ladies. I am thinking I will stay on the Tamox for now...I finally got used to it and the cholesterol issue seems to be a factor with either drug...
If I knew for sure that the nastier side effects were reversible, I might be more inclined to try it.
Disease free survival is good, but does anyone have info on the overall survival with Tamox vs. the Aromatase Inhibitors?
Not sure that the % of benefits outweigh the risks between Tamox and Femera. Quality of life is important. Does zero estrogen equal accelerated aging? So many of the side effects seem like aging rapidly to me...
I am certainly glad to have the choices that I have...seems with my stats it is worth taking something, just seems safer to stay with Tamox until if and when it fails and then move to something else if that is the choice...
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Nowords, with all the anti-hormonals you will get extra dry skin, skin that looses elasticity and looks crepey as well as the tummy tyre that often appears on elderly women so in answer to your question.....yes, unfortunately all these drugs give us the accellerated aged look. There are things you can do to make the best of this situation ie good healthy diet, good skin care and moisturisation, exercise. IMHO, this is way better than the alternative.
Love n hugs. Chrissy
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Chrissy you are so very sweet. Thank you for your input. I'm going to try the Boswellia (sp?). I'm just going to put this out there..I am not the same person I was even six months ago (started Arimidex in Dec, switched to Femara one month ago). Besides the God-awful pain, I'm so fat, so fatigued, and I can't seem to remember things. I also have trouble saying what I mean to say at times, like I know what I'm trying to say, but I can't make the words come out. Anyone else have any of these side effects?
Thanks so much, Tracye
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Does anyone have a hard time with remembering when to pay the bills or if we have an appt I will miss since I can not remember from one minute to the next!
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Thanks chrissyb...you have posted good info on many of the threads.
I have said that I want be around long enough to have to worry about long term side effects...so I hear you about the alternative...
The cumulative effects of the chemo, rads damage and lymphedema diminished quality of life and I learned to work around it and be thankful that I am still around. I am a 'just deal with it" kind of person. My liver enzymes are increased on tamox and all of my cholesterol issues have worsened since cancer treatment, despite diet and exercise. Heart and Stroke are in the family history. I do not smoke; my perfect blood pressure is erratic after treatment...so while I know I need to take advantage of what I can with the hormonals, I would like to do it as educated as I can be, so as not to survive and degrade my total health along the way. I need to stay NED and try not to destroy my heart, joints, bones and cognitive skills in the process...
The overall survival and NED survival stats in all of the studies really interest me...what do they really mean? Is it really as simple as "this combo or sequence of drugs kept group A disease free longer than group B, but no difference in how long A and B lived? If that is the case, then the risk vs. benefits are even more important. I want to live life as well as survive.....I am greedy
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Nowords, if you are greedy because you want to live a long healthy life, then so are we all! but we can only do the best we can with what life has dealt us. To tell you the honest truth, other than when I was Dx'd in 2003 I have not looked at statistics on anything. The studies are carried out only on a particular portion of the overall community to get the answers that they do and yes, there are benefits to them being done overall as I am the one who benefits in the long run. But when you get down to the absolute bottom line, just because X did well on that regime does not mean that Y will to so as far as I can see and this is just my opinion it comes down to what works for you and to find that, sometimes it is trial and error.
Love n hugs. Chrissy
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Hi moyarscs
Yes, mental disorder is one of SE's from chemo with Taxotere as from Hormonals too. Must to say my short memory after therapies is gone. I'm trying to improve it with exercising.
We'll see. Take care!
Greetings
Usha
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I often say to people during conversations " I can see the word whipping through my brain, I just can't catch it in time to say it" - you know what I mean, I know what I want to say I just cannot get the word(s) out, and yes I can be mid conversation and forget what I am talking about completely. I used to be able to memorize phone numbers and names but now .... not so good. Oh well. Looks like it's more than just you and me, spendygirl, that suffers from this side effect so it's a comfort to know we are not alone.
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chrissyb,
I know what you mean about not looking at statistics. I know that it is all trial an error on an individual level. I am a research junky by nature. Science is fascinating.
You seem to have made peace with the realities of living with breast cancer. On my best days I have, but a bit over two years since diagnosis, sometimes I think I vent by gathering data! LOL
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Nowords, I have long ago found my peace with the realities of living with BC as you say. I too love science and always have but not on the research side although that is facinating. I think if you can find something that soothes you when you are having a not so good day, and the good days far outweigh the not so good, then you are well on the way to finging your own peace and that is always a good thing.
Love n hugs. Chrissy
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Ok as far as memory loss goes, It was worse for me when I was doing chemo. But, since I am already post menepausal, who's to say if it's related to age or cancer. Duh, I remember complaining in my 30's that I could not remember a name for anything.
My hair is also thinning. My onc says its rare. It may be that the ladies who are having difficulties post and the ones who are sailing through are, well sailing through...
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Does anyone have zometa infusion while taking femara? How often do you take them?
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I've been on femara (generic) for about 10 days now. I'm also on zoladex to shut down ovaries.
I'll be having my first zoladrenic acid infusion in the next few days (aclasta which is 5mg) and its going to be just once a year.
I'm having it because my hips are osteopenic (I'm light build & active- my G'mother was osteoporotic)
I was told it helps prevent recurrence too, yay.
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Hello! First I would tell you not to necessarily expect side effects. It's so hard, with side effects that mimic normal aging issues, to tell if it's the drug or life. That said, I believe I have had a number of issues -- from very dry skin to foot, knee and now back issues that could have kept me from the active life I love. I have been on Femara for four years now and I guess, though I could have just stopped, I also believe it's really working. So I have about ten more months and I will stick it out. I come from a healthy family with absolutely no joint issues and I have plenty! I have piriformis issues, foot issues -- you name it! My biggest issue is an oncologist who really has no direction or answers. I don't think they have much experience dealing with those of us whose only issues relate to the drugs we are taking. They are busy taking care of those with active cancers! I am still looking for a general practitioner that I can actually talk to, but have had no luck. I think that is the biggest issue -- more than the side effects. So these forums give me lots more information than I ever get at the doctor's office! But honestly, don't read the side effects unless you think you might be having an issue. If you are like me at all, reading about them can sometimes create them if you know what I mean. Every drug has a really long list! Hope this helps...
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It´s good to know that I am not alone , that there are othre ladies out there with the same s/ e as me , so I am not "making it up " or "over reacting .." I´ve changed from generic to Femara . The s/e are quite different . Mainly it is now joint pain , ankles are the worst and make me look as if I cannot walk properly , toes , feet , knees ,elbows, fingers the list goes on , I really hope to be able to put up with these by excercise . Hair loss , quite marked , awful to pull it all out of the plug hole , but I sweat so much I have to wash it every day . Have I put on weight ? Is the pope a catholic ?! Far too much and struggling to lose it .
Yes, I agree this drug regime does speed up the aging process , which is sad . I want to live , but I want to be able to enjoy my life now , not put everything on hold until I finish Femara and then hope .............that I might return to "normal ."
I don´t like the fact that when Nanny sits on the floor with Sam and Abi , she has one hell of a job getting up again ! And as for playing "chase " ...........no chance , I cannot run .
I´m 60 going on 80 !!
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Hi cyclepath and jackwagdstaff,
You are so right saying how our oncos are dealing with complains about our SE's. I'm sure - thru all years - they know all about, but couldn't react, hormonals, with all SE's, are accepted as official healing and so it is! They are being ill at ease knowing they couldn't do anything.
Active cancer healing for them is more acceptably.
To be a medical oncologist with omniscience is a hard profession.
Wish acceptable SE's to all BC sisters!
Usha
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I'm so excited I just had to post... I've been on Letrozole for 2 weeks and so far my only SE is some diarrea (knocking on wood). My insurance doesn't cover prescriptions but gives a discount, so last month I paid $435,00 after the discount and an online coupon. I just called Costco and they have it for $22.48!!! I couldn't believe it so I called another Costco and got the same price quote! This is such a blessing as we are self employed and were already financially strapped before my diagnosis. I'm hoping this information will help someone else.
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Seashelly that's wonderful news!!! Here's hoping your side effects stay minimal!
Cyclepath: I have talked to my onc and he told me to take Aleve. I mean, I can't walk most of the day, sometimes it makes me cry. I honestly think these drugs are performing so well and there are so many of us living longer, that they really don't know how to treat the side effects successfully. I think I'm going to go to my primary doc soon and see what he has to say.
Blessings to all, Tracye
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I was on femara for 2/12 yrs. i have medicare part d and for generic i pay my copay 27.00 for 90 days but the total was $1239.00 toward my part d so i could only get it for 6months. then i went in doughnut hole. So after checking i can get arimidex for $10.00 for 90 days and only $120.00 toward part d. Talked to my onc and she said the switch was fine they both do the same job.I asked why such a big difference in price.She said the drug company.
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Nanna , is the Arimidex the real one or a generic ? I ask , because if I want to continue on Femara here in Spain , it is going to cost me 97euro every month . I can have the generic letrozol free, but despite having been put on five different ones ( not my choice ) none of them suited me , I´m better ( despite the real painful joints etc ) on Femara. However , we are pensioners and cannot really afford it .
My onc said that he could change me to Arimidex , but I have´nt yet found out the cost of that ,your post has given me hope . I don´t mind trying Arimidex , so long as I´m not palmed off on another load of generics from God knows where . I think I´ll pop into a few pharmacies tomorro w and see whats cooking .
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The armidex that i get is generic. I have been on it for a week and i can tell no difference. Still have some aches and pain
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Seashelly, I kind of know what you mean about diarrhoea from femara. Mine's not quite but close! Also have bloating (slight) but gynae says zoladex does that- thinking of oophorectomy sometime if this regime brings tumour markers down (gynae says less severe SE's with ooph).
Nanna, how often are you having zometa? (zoladrenic acid, like aclasta I guess). My first will be monday.
So far my SE's on letrozole (generic femara) are minimal- no hot flashes yet, a little stiffness when getting up after sitting down for a bit...but early days.
Luckily the letrozole & zoladex are funded for me here, but I have to pay for the aclasta ($750!- yikes, thank goodness its only once a year!)
Do SE's lessen after your body has gotten used to the new drugs, or do they worsen or stay the same? I guess it depends on the person?..
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I have the zometa infusion every six months
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Have you started yet? If so, any SE's? Are you on it for bone density too? So many questions...sorry!
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Yes this is my 3rd infusion and it is for bone loss. Yes I had flu like symptoms for about a day. Drink plenty of water the day before that helps on the pain.It not bad just uncomfortable for few hours.
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Ladies, I recommend seeing a naturopath for advice on dealing with side effects. I have also seen a physiotherapist. Some ladies say that complementary therapies such as accupuncture also help. I may try that in the future.
My main side effect after a month is joint pain and stiffness. My naturopath recommended omega 3 and magnesium. I am sure exercise is also very important.0 -
Thanks for that nanna. I will be sure to drink heaps!
Racy, is the omega 3 & magnesium making a difference? I guess it might take a while to kick in.
I'm thinking of starting a pilates class, might help to, can't hurt anyway (I hope).
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KT66, my joint pain is mainly on moving from a lying or seated position to standing, or changing position in bed. I only started Femara 3 weeks ago. I try to take the supps every day but have been away on holiday this past week so missed a few supps due to the changed routine. I believe taking omega 3 is supported by some of the articles on this site for multiple reasons and plan to continue taking it. The magnesium did seem to help with some minor nerve pain that I had after chemo, or perhaps it went away on its own.
I am continuing to search for remedies for the joint pain, whether they be exercise related, medication, diet or complementary. That's why I am reading this thread :-). Will let everyone know when I find my cure.0 -
Hi Everyone,
Just a quick update (I rarely post), I have been on Femara now for 9 months, and I feel really really good. My memory has gotten better, and I have been running almost everyday.
Hoe you all are well!
Take care,0
