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I stopped that after 5 or 6 months and went on arimidex. I quit that when I couldn't breathe. Saw my MO about a week ago and he asked me to give the arimidex one more try, since it's not supposed to cause breathing problems. After he explained again that it was at least if not more important than chemo, I decided to be a grown up and try it again. Since I've lost some weight, hopefully I won't have problems this time. I remember my MO giving me some sort of follicle something sorry I can't remember what exactly it was during my last few rounds of chemo.
You might check with your onc and see if that's a possbility. Ya know, Marge, my onc. I should have gone straight to the tamoxifen. I honestly don't think they know. I feel like these same treatments have been in the works for so long and they don't research to find out new ones that may work better because the drug companies make so much money off of us.
I am just frustrated. Two years out and I am still very angry about all this. I was pre-menopausal going into this and was put into menopause with all those lovely side effects, now I have to choose between a re-bound of the breast cancer or uterine cancer, stroke, blood clots, weight gain, fatigue and depression, etc.
Scream, breathe I am not sure what to do. I just know I feel like crap on the tamoxifen and don't want to take any more drugs!!!!!
I'm sorry you're having such a hard time with the decisions and the drugs. In spite of anything I said, I understand your frustration, and the decision is a very personal one.
I'm sure you'll make the one that's right for you. I'd have gladly given up the golden opportunity to feel like I was the walking dead during chemo. I have been on Tamoxifen since May of last year. So, I have been on it for over a year. I have had side affects, started with tiredness, bone pain,and hot flashes. I also have had pain with ovarian cysts, and other pelvic pain along with that. I went off the tamoxifen for a month, to see if the pelvic pain would go away, it did not.
I went back on tamoxifen, and after a couple of weeks, all side affects except for cysts went away, I hardly know that I am on it. I know we are all handle meds differently, I have not experienced the mood swings, or hair loss, although I do know hair growth has slowed down. I don't have to shave the legs as often as before. I feel for you not knowing what to do!
Hugs to you! There are several on this site that aren't taking tamox for their own reasons. We all must decide what is best for us, and, us alone. I have to miss work 2 more weeks-total of 5 wks Wait a second, Denise. You mean you had a hysterectomy because of the side effects of tamoxifen? I had pelvic pain when I was on it and don't any more. Please post an update to let us know if you were put back on it.
Thank you everyone for your responses and for sending all the hugs and good thoughts. I hate that any of us have to go through this. I have to believe there is a better drug or way to beat this than some of the drugs they put us on. You can get uterine cancer all by yourself without Tamoxifen. Ask me how I know. Yes, Tamoxifen does add yet another risk factor to developing uterine cancer, but so do a lot of other things being overweight, alcohol, early menarche, late menopause, etc.
The risk of recurrence without Tamoxifen is greater than the risk of uterine cancer from it. Many women are unable to tolerate Tamoxifen or the aromatase inhibitors for other reasons and some do not want to risk side effects and would rather take their chances. It's a personal decision, but also a medical one, and it deserves careful consideration.
I don't know what I'd do if I wasn't tolerating Arimidex so well. And, I do worry about the side effects I can't feel or see. Now, about the hair thing.
I bet we could be twins. Did you have Taxotere? It has been 9 months since my last infusion and I still look like a freak. Bald was better. I've had tests for thyroid, iron deficiency, and autoimmune disorders. I'm anxious to see my oncologist in a couple of weeks because she insists it cannot be from the chemo.
I do know hair thinning can be a side effect of the Arimidex I'm taking, but I have actually heard of many women being stuck without hair after Taxotere.
I hate it, but I hate cancer more. Like you, I can't won't go out without my head covered. And summer is coming. Hi Suzanne, You are right about the uterine cancer and other causes besides tamoxifen I still hate being on it. The biggest problem has been the depression. I can't function if I am depressed. I am sure the lack of normal hair is contributing to the depression I had taxotere!
Along with carboplatin and herceptin. I will be two years out from my last chemo this october. You can see what my hair looked like last summer and it hasn't changed at all if you look on my personal page. I posted some pics of it. Very depressing indeed!!! I was put back on tamox yesterday for another 2 yrs.. I had been taken off for 2 mths to see if side effects got better and they didnt' I never felt that I had a choice about tamoxifen because my tumor was large and my prognosis was bad without it.
Now, 24 years later, would I take it again? It is an individual decision, but never, ever doubt that it saves lives. I am living proof! I have been reading different posts here and being on it does seem like the better choice.
I go back to my Dr. June 22 to figure out what to about the depression. Thanks for your responses everyone! Are you on any type of anti-depressant? Many of us are and there are certain ones that do interfere with Tamoxifen and those that don't. I'm on Celexa and I think Effexor is another one you can take with Tamoxifen.
Thanks for the input, yes I am on effexor I was on zoloft and didn't feel the same depression, but they switched me to effexor because it interferes less with the tamoxifen. I feel more of the depression now though My biggest fear was blood clots have varicose veins and hair loss.
No clots so far and the hair is thinner. Was before but I it is getting thinner. I roll my hair with small rollers and use herbal essence volumizing shampoo. My hair looks thicker than it is. BUT I do worry about it not coming back like yours if it gets that bad. I have been on tamxo for 17 months. I have depression dx is enough and my doctors wanted me on effexor.
My fear thing for me with effeor is it's habit forming. My friend refused it too. For stress I am a driven person. I keep going going and going. Never stop and I have to deal with alot of problems with people. What one person doesn't do the next does. Busy body peoeple who need to not worry about me and where I go,what I do or how I do it. It's my daughter in laws. I think you did the right thing by going off tamox but think you should take something.
Maybe that new drug that has no side effeects compared. I will continue taking it. Your hair was thin before like mine. You have me worried now. I Didn't need it but tamox may take it toll. Has somewhet already. Hope you find something for added security. My 16 year survivor friend wants something else even though she took tamox and something else for 10 years.
She always had thick hair. Hasn't hurt her any. I told my doctors about hair loss and they didn't eeem to mind. Like I said my shampoo and rolling my hair does make a big difference. You know how we feel after dx,hair loss, weigh gain or loss etc.
Well the other day a guy walked up to me at the store. Said he Liked my perfume. I thanked him. Then as he was getting ready to walk away. He said out of the blue,. Pretty lady. Even with this thin head of hair. I didn't realize Tamoxifen could cause depression, and I hope you can find a medication that won't interfere with it so you can take the T or at least not have depression a factor in your decision.
Now, about the hair. My hair is gray, so it might be that your darker color and greater length camoflages somewhat. Nonetheless, I so feel your pain about your hair. A woman I know said her sister had the same issues after her treatments and it took her over 2 years, but she did get her hair back. So maybe there's hope for us.
I'm not giving up yet. I didn't realize Tamoxifen caused hair growth problems. I learn something new all the time on here. I've been on Tamoxifen for a year and my hair looks pretty normal now as far as thickness goes, but it is very fragile and breaks off easily on the ends. It wasn't getting any length because the ends kept breaking off. But it's better now.
I'm 2 years out of chemo, so maybe it just takes that long to normalize. I also take effexor which seems to work for me. Hang in there, your Onc. Effexor is an antidepressant. It is not considered addicting. In fact, I took it for a few years at menopause and had no problems stopping it. I just weaned it very gradually. Almost anything can be habit forming, and I am sure antidepressants are not different.
And, you should wean yourself as directed. But just wanted to let you know that I had no problem whatsoever in weaning myself. I stayed off antidepressants until my recurrence and then I felt myself sliding back into depression. I am now on a low dosage of lexapro, which has worked very well. Remember that depression can affect your body in many negative ways too. It can make it harder for your body to fight the cancer.
Also, cancer makes us higher risk for depression, so don't let yourself suffer needlessly. I also had a terrible time with the side effects -depression and severe joint pain were the most prevalent side effects. My insurance just approved my request to have genetic testing, so depending on those results we will determine if i will go on another drug like tamoxifen. I've told my oncologist i'd rather just have my ovaries removed to take care of the hormone aspect, than be on tamoxifen for 4 and a half more years, the few months i was on it was unbearable and i was completely miserable, physically and mentally.
Heather, if your tumor was Er -, I wouldn't think you would need to be on tamoxifen. You are probably fine off of it. Thanks for your input! I don't know what to do. I realize it saves lives. I am in constant fear of it coming back. Yet, my quality of life is terrible on it. I am a single mother of 3, working full time teaching, I need my mental mood and energy to be up in order to function.
On the tamoxifen, I am miserable. I immediately took myself off Tamoxifen. A month and a half later, when the gyn went in to remove what was there, there was only one small polyp, indicating, in my opinion, that being off Tamoxifen reduced its size! The pathology reports on the endometrial and cervical scrapings and on the polyp itself were all benign. My hot flashes are bearable now and I am weaning myself off of Effexor as a result.
Still get leg cramps like crazy. I'm surprised he did not suggest Raloxifene. I never took the test to see if I have the genes to metabolize Tamoxifen.
Please note that I had only DCIS, not at all invasive, in only one small spot, with clear margins the first time. I would feel differently if I had had any invasive component!!! I feel vulnerable not taking any estrogen lowering drug. BUT 1- if I lose about 50 pounds I will get rid of a lot of the fat that makes estrogen. Before breast cancer I took no vitamins of any kind. I know it's a crap shoot, however.
And the easiest part is to be vigilant, something we all must do, right? The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.
Skip to main content. Cancer Survivors Network. Click here to search public areas. Forgot username or password? Not a member? Register now. Anyone stop Tamoxifen, then have recurrence? Has anyone regretted stopping the Tamoxifen due to recurrences? Thanks for sharing. Log in or register to post comments.
Connie, I did more than a. Cindy I have been working as a mammo tech for the past 5 years. PS - imaging. New Flower. Connie, I have read about your question here for several times. Tamox user - but also a endometriosis sufferer. Hi Crselby. I am just curious Did you get endometriosis from tamoxifen? I have already suffered from endom. So, I am about 8 months into tamox. Should i be worried? I still hoped that I would have a chance to have kids.
I'm Connie, this is of great interest for me And no, it is not oncotype Hugs, Kathi. I felt like the old me had died, and the new me was a jerk. I became arrogant and egotistical. Who was this guy? Not the Steve of old. On Sept. No more. Since then, I have been feeling incredible.
I feel like the old Steve is being resurrected. It will take time to get back to my old self. Now, I am taking a gamble and some people may even say that I am crazy, because I had two years left to go on the medication. Why take the chance? Because I know, in my heart, that the big guy upstairs is going to take care of me. I will still keep seeing my doctors every six months.
And since I am no longer on tamoxifen, I will be exercising three times per week with a personal trainer and using a nutritionist. That is deal I made with myself as a condition for divorcing tamoxifen. I am not recommending this same course of action to those out there. This is for me and me alone. However, I am not alone in people who have stopped taking tamoxifen.
In fact, one study I saw shows that as many as one-quarter of all breast cancer patients stop taking it within the first year. This non-adherence increases over time. So, while tamoxifen may be a great med to reduce breast cancer recurrence, what good is it if patients cannot tolerate the side effects? Clearly, we need more research into better meds. For more information on male breast cancer, please go to www.
Note: Breast Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Breast Cancer News , or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to breast cancer.
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