Bottle 'o Tamoxifen

josie123

Lacey, I'm sorry your so itchy,are you maybe allergic to it?

I just felt like I was going to try it again because They said I have no other options right now.I knew that although it was unpleasant It wasn't life threatening to have itchy eyes or foginess.I don't know if I was as extensively itchy as you are how long I would be able to tolerate that.I hope they find a different one to use for you that doesn't have the side effects.

butterfleyez

hello

I just wanted to check back in and report my progress on tamoxifen. I started it in December with much trepidation and have been relieved to so far have minimal SE. I had night sweats for about two weeks and then it went away. I feel like my hair is thinning or shedding way more (taking biotin to see if it helps) and that's it! I am however very fatigued but I'm not sure if its the tamoxifen or after effects of the surgery. 

SophiaMarie

after 4 months I can see some odd things creeping in - like my nails splitting and waking up with leg cramps.  Things that don't normally happen.  Besides the hot flashes of course and irritability.  That's been helped by a low dose of effexor.   I started taking magnesium for the leg cramps (after reading that tamox can deplete it!) and so far they've kept away.  I suppose I should now also add biotin to my arsenal for my nails.  

butterfleyez

I wonder if tamoxifen has different SE depending on if its taken pre or post menopause? Or is post menopause a different med?

Headeast

Butterfleyez, sometimes MO prescribe tamox after menopause. Usually after meno they prescribe other ones.

Donnabelle

I am taking Tamoxifen after meno because I have osteoporosis. As far as side effects, they have been minimal and several have gone away. Fatigue, leg and foot cramps, headache have all lessened considerably and the hot flashes and night sweats have calmed down also. I have been taking it since 9/13. The fatigue was debilitating at first, but I have much more energy now. Hang in there everyone!

Headeast

Donnabelle, thank you for sharing about fatigue. That is a big struggle for me. I am taking now Celexa and hope that will help in some way.

Donnabelle

I am also taking Celexa, after having to switch from Paxil because of the interaction with Tamo. I did have to increase the dosage of the Celexa to help out with the hot flashes and it seems to be working. 

Strange thing from reading these boards is that many seem to really like Teva brand. I switched to Teva about six weeks ago and the hot flashes increased dramatically, so that's why I asked to increase the Celexa. Seems to be working though!

josie123

Donnabelle, isn't it interesting how even though it's the same drug it can have different side effects for different manufacturers.Makes me wonder.

macatacmv

I am another"older" lady on tamoxifen. Tried arimidex and couldn't handle the pain. It's taken two years and lots of trying but we finally have a med combo that works for me. I was asking my pharmacist last week if any of my meds had stimulants in them because I'm feeling so good. He went and looked and came back to say no, the meds are just working the way they should, we finally got it right. My life is not perfect but I am so grateful to be able to function and enjoy life again.

gemini4

macatacmv, so glad to hear you're feeling good these days!  How is your return to work going?

Josie, I think the issue is that the various generic brands use different fillers, and it seems those fillers can cause varying reactions from person to person. It's just tough to know which one is best, especially since it looks like only the Watson brand is widely available. 

Lacey12

I am also an older (68) lady on Tamox (or at least up until now). The original plan was two years on T, then three in an AI...however I have resisted switching to an AI due to already existing joint pain               (especially hands) and concern that it would become unbearable. My MO  went along with my wish to stay on Tamox ( or more aptly, avoid going on an AI), so I am into my third year on Tamox....and am taking several weeks off to see if the brain fog remits. I've agreed to "try" an AI after a few weeks just in case it might be less problematic for me. She contends that some of her patients have found an AI to be gentler than Tamox. I am very skeptical but as she says "what do I have to lose" when I can go right back to Tamox if I find the AI difficult. We'll see.....

I also think that the issue with the responses people have to different manufacturers of Tamox has to do with the fillers each uses. Wouldn't ya think that there'd be some uniformity with that!

Macatacmv, I am so pleased for you that things are going well! Hope being back to work is fun. I miss being more productive.....:( I feel like I also need to get this meds business worked out so I can be more than a patient.

corky60

I love hearing about older ladies on Tamoxifen who have figured out how to make it work.  I find it very encouraging.  I'm glad that we can lift each other up.  Thank you!

I know of a lady in her 90's who's been on Tamoxifen for twenty years so it must be working.

Lacey12

Oh Corky, please don't let that path be mine.....working or not! I'm curious as to why she would be on such a protracted course when I thought the research during that time pointed to the five year efficacy. Interesting.....

macatacmv

gemini, my return to work is good! It is a real boost to my self esteem. I can't do some of the work, but I have hired someone to do that for me. The trick is me being able to ask for help from him, and/or me letting go of the work. I really like what I do, but I can't easily work scissors or hand held staplers anymore. Tomorrow I am meeting with a hand surgeon to see if there is some relief to be found. I have managed to get most of the inflammation down except in my right hand. I work with a OT person every week to loosen up the muscles. It is a full time job just trying to get and stay healthy. 

yazosa!!!! twenty years on tamox???!!!!

Donnabelle

Congrats on going back to work macatacmv! Getting back to a normal routine has helped me tremendously. Hope your hand issues are resolved.

Question for all of you: why is Tamoxifen primarily used on pre meno women and the AIs after meno. I never got a clear answer on this from my MO, and then I had to switch doctors (insurance issues) and forgot to quiz the new doc about it on our first meeting. Am I missing out on better protection from an AI? I am 60 and am really concerned about the osteoporosis. The new doc said something about switching me and managing the osteo, but then he didn't pursue it and neither did I.

ndgrrl

Hi Everyone I have been on Tamoxifen since Sept 2013 and I am still so exhausted. I also noticed I have knee pain = which the NP Onc told me wasn't Tamoxifen related but I wonder as it just doesn't go away and I never had any problems before- I am also noticeing cramps in my feet which are a new thing. I am also taking Effexor a low dose for night sweats which did help me.  But being so tired is really affecting my quality of life. I can sleep 12 hours a day.

butterfleyez

it's good to hear that fatigue is common. I was getting worried. Since I've gone back to work its just been exhausting to get up and get out by 7 no matter how early I get up. Is the drug you're taking to combat night sweats also helping fatigue? Anyone tried acupuncture for it?

ndgrrl

Good question, I am not sure if Effexor contributes to fatigue or not. I am on the lowest dose of it.  It does help the night sweats and I have not gained any weight which I am most thankful for but the fatigue is really getting old.. I am not wanting to do anything but sleep any chance I get.

SophiaMarie

I was fatigued even before starting effexor.  Although since starting it, I do seem to have some decent energy days, but if I do too much, it will definitely catch up to me and I get that exaggerated tiredness.  Not normal for me!  

butterfleyez

ugh! I can't be tired for the next five years. 

Donnabelle

Hi ndgrrl - I hear you about the fatigue. Mine is better now, but for the first 6 months on Tamo I was so tired I could barely move some days. I work 7:30-1:30 and my normal routine is to get home and do housework, cook dinner, shop, etc. During those months I used what energy I had for work and then I was literally done for the day. I was lucky to cook one night a week and cleaning? Haha it never got done. Thankfully I have a very understanding and supportive spouse. It has improved a lot now and I think it has to do with switching generics. I am now on Teva brand. My other SEs have improved as well. I have heard that in time, as our bodies get used to the drug, things do improve. I hope they will for you soon!

Lacey12

Butterfleye, are you sleeping well, or up with sweats, etc.? I was totally exhausted the first year and a half on Tamox, and have been better since starting the controlled release melatonin regimen to help with sleep. Other than the sleep issues, though, I do think we all expect to bounce right back from surgery, radiation, chemo or whatever, and our bodies do take a fair bit of time to recoup from all that. My MO told me that many of her patients find themselves feeling better energy in their third year out. That seemed like forever to me when she mentioned it, but now it is much closer. I do find, tho that I still get exhausted after a really busy day, a driving trip, etc. Learning to pace oneself to accommodate the "new normal"  can be a challenge. Best to all.....

Belinda977

Tamox does make me tired.  I take it after dinner with my Celexa.

Lacey12

Just want to be clear that I was NOT suggesting that Tamox is not also related to the fatigue many of us feel. On the "personal prescription info" printout that Walgreens includes with my Tamox it clearly states...."possible side effects.....bone pain; cough; dizziness; hot flashes; muscle pain; nausea; tiredness; vaginal discharge; or weight loss."  Those are not the side effects that they suggest warrant an immediate call to one's doctor...

I do think, tho, that feeling totally wiped out when I first started Tamox also had to do with working full time throughout my treatment of two surgeries and 33 rads....starting the Tamox stopped me in my tracks. I blame it on the inability to sleep that started with the Tamox.

corky60

ndgrrl I also have knee pain that I attribute to Tamoxifen.  It is over the kneecap.  The knees and elbows have become stiff too but this is not the same as pain.  Fatigue is also an issue.  But I have to say that so far the SEs are much less than Aromasin.

corky60

Donnabelle, my understanding is that statistically there is a longer survival rate for some post-menopausal women if they take AIs instead of Tamoxifen.  But AIs can cause bone loss.  Tamoxifen on the other hand acts as a weak estrogen on bones and the uterus and doesn't cause bone loss.  Until the past decade or so Tamoxifen was the only med out there for us.  And for those of us who can't tolerate AIs or who are concerned about osteoporosis Tamoxifen is still an option if it's not contraindicated.  It really depends on your medical history, your DX and your MO.

DawnCT

Donnabelle  -  there is  lot of good info here about Tamoxifen and AIs.  

Corky gave the perfect explanation. 

http://www.breastcancer.org/treatment/hormonal

butterfleyez

thanks ladies. Good to know I'm not alone on this sleep walk lol I just had surgery 5 months ago so I'm sure time will help. I do sleep very well... Too well. I don't want to get up. 

Loneskier

I have been on Tamoxifen since Dec 2012 and just recently I started having the knee pain.  I exercise 4 times a week and I  am trying to find new ways to not kneel on the painful parts of my knee caps.  Does anyone know of any thing that can be taken for this issue?

Thanks