Quitting Tamoxifen
Comments
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@kellykellyk123 said:Wait a second, Denise. You
Wait a second, Denise. You mean you had a hysterectomy because of the side effects of tamoxifen? Yes, they say for sure tamoxifen does cause thickening of the uterus in 100% of the patients and that is why it can increase your chances of uteran cancer. 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.
yes I had complete hysterctomy due to side effects of tamoxifen...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'...so had surgery...0 -
Effexor is anLynn Smith said:Tamoxifin
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 always thought if I needed chemo would my hair EVER come back.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.
Lynn Smith
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.0 -
im off tamoxifen for depression and severe joint painkellyk123 said:Thanks for the input, yes I
Thanks for the input, yes I am on effexor...pretty much the highest dose I can be on. 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 :-(
Kelly I have been on zoloft for years & when I was put on tamoxifen my Onc at the time told me that it was perfectly safe to take it along with the zoloft, that it wouldnt interfere with it. I also had a terrible time with the side effects -depression and severe joint pain were the most prevalent side effects. My new oncologist has taken me off of it for now - for one, my cancer was Er- and only slightly (1-4%) Pr+, and i had a bilateral mastectomy. 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. Best of luck to you
*hugs*
Heather0 -
Heather, if your tumor wasHeatherbelle said:im off tamoxifen for depression and severe joint pain
Kelly I have been on zoloft for years & when I was put on tamoxifen my Onc at the time told me that it was perfectly safe to take it along with the zoloft, that it wouldnt interfere with it. I also had a terrible time with the side effects -depression and severe joint pain were the most prevalent side effects. My new oncologist has taken me off of it for now - for one, my cancer was Er- and only slightly (1-4%) Pr+, and i had a bilateral mastectomy. 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. Best of luck to you
*hugs*
Heather
Heather, if your tumor was Er -, I wouldn't think you would need to be on tamoxifen. Tamoxifen only works on people who were Er +. 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 get increasingly more depressed, have NO energy, and my hair gets thinner and thinner....and I already have VERY little since the chemo. I am just wondering if anyone who was Er + made the decision to stay off it.0 -
I would consider going tokellyk123 said:Heather, if your tumor was
Heather, if your tumor was Er -, I wouldn't think you would need to be on tamoxifen. Tamoxifen only works on people who were Er +. 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 get increasingly more depressed, have NO energy, and my hair gets thinner and thinner....and I already have VERY little since the chemo. I am just wondering if anyone who was Er + made the decision to stay off it.
I would consider going to another oncologist for a second opinion on the tamoxifen if it's making you that miserable. You have to consider your quality of life also. Did they test to see how well your body metabolizes the tamoxifen? I didnt have that testing, but I've heard of others on here who have. It may not even be doing you any good, and there may be another drug that you would do better on.
*hugs*
Heather0 -
Kelly
I'm sorry to hear you're so depressed. I'm not on Tamoxifen but I am on Arimidex. I took antidepressants for more than 10 years (peri and post menopausal). I've been off anti depressants since being dx with bc. Now the hair is another situation. I finished chemo Dec 7, 2010 and I still have white frizzy hair that is barely 1" long. Wish I could offer something other than "hopefully it gets better".
{{hugs}} Char0 -
Kelly and Char-im so sorrycahjah75 said:Kelly
I'm sorry to hear you're so depressed. I'm not on Tamoxifen but I am on Arimidex. I took antidepressants for more than 10 years (peri and post menopausal). I've been off anti depressants since being dx with bc. Now the hair is another situation. I finished chemo Dec 7, 2010 and I still have white frizzy hair that is barely 1" long. Wish I could offer something other than "hopefully it gets better".
{{hugs}} Char
Kelly and Char-im so sorry you are both (and Double Whammy also) having hair regrowth issues. Mine has come back bone straight, and super thick, and really fast. I take prenatal vitamins and biotin, and had a hairdresser recommend this product to my husband when i was first finished with chemo & impatient about my hair growing back. I can't say if this had anything to do with it, but my hair is coming back in better condition than before, thicker and rapidly growing. This isn't a "miracle growth" serum or anything-the hairdresser likened it to "fertilizer" for your scalp. it's called Nioxin Scalp recovery madicated cleanser-it does NOT have hair growth stuff in it (like minoxidil or anything) but is a scalp treatment. It's around $20 a bottle, depending on the salon. I would urge you to look into it - it's not too costly and wouldn't hurt to try. I gave my mom half of my bottle when her hair started growing back & hers also is coming back in really quick and thick. I'm going to attempt to paste a link to the amazon product page for the stuff now : http://www.amazon.com/Nioxin-Scalp-Recovery-Medicated-Cleanser/dp/B001QAA1GG/ref=sr_1_1?ie=UTF8&s=beauty&qid=1308089674&sr=1-1 - ok it didn't make a link but you could always copy & paste that into your browser or just google it!
*hugs*
heather0 -
Let us know what you findkellyk123 said:I have been reading
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!
Let us know what you find out on the 22nd. Good luck!0 -
Tamoxifen
My doctor and I discussed the side effects of the medication. Which of course I was not at all excited about. I asked about the level of risk for the side effects..then I was like ok I am cool.I was told to begin taking it after rads.I completed rads in April. So I started about a week or so after my last rad treatment. I took it for a week then stopped because the thought of the side effects freaked me out.I just knew I would be that 2%. So at my follow up I told him I was AFRAID of this medication. He told me the risk for my breast cancer returning was greater than the risk of the side effects...so I guess we are dammed if we do dammed if we don't.0 -
I need to do more researchtjohnson2310 said:Tamoxifen
My doctor and I discussed the side effects of the medication. Which of course I was not at all excited about. I asked about the level of risk for the side effects..then I was like ok I am cool.I was told to begin taking it after rads.I completed rads in April. So I started about a week or so after my last rad treatment. I took it for a week then stopped because the thought of the side effects freaked me out.I just knew I would be that 2%. So at my follow up I told him I was AFRAID of this medication. He told me the risk for my breast cancer returning was greater than the risk of the side effects...so I guess we are dammed if we do dammed if we don't.
I;ve been feeling very anxious about these decisions that I will need to make after surgery and rads. Just today I was talking with my therapist about needing to do more research for myself on side effects vs effectiveness of tamoxifin, AI drugs, ovary removal, etc.
I;m sorry to hear some of you are having side effects, at the same time I am glad to read everyone;s comments here, since it helps me to know I am not the only one struggling with these issues. Since my dx in Dec the amount of new information about cancer and cancer fighting drugs that I have gotten is just amazing - definitely much more than I EVER wanted to know. As tjohn son said, sometimes it feels like we are damned if we do and damned if we don't. It's all about the tradeoffs, I guess.
For some reason I was not as afraid of the chemo as I am of the drugs that I would take afterwards. I am trying to remind myself that I am lucky that I am 100 ER+ so that I do have the option to take drugs to reduce my risk. But I am still very afraid of the side effects. Maybe it is just the cumulative anxiety about everything that is getting to me.
Laura0 -
Quit too
I started Tamoxifen in Jan after chemo and rads. Chemo was just a small % of benefit. Had I known ahead of time how it would devastate my body I would not have done it. The tamoxifen was suppose to be my best bet. I took it for 3 months and suffered so much depression and yes, hair thinning (after it had FINALLY started to grow back in, it stopped growing). I also experienced blurred vision, muscle spasms in my back, joint pain and a feeling of nervous restlessness that I could not cope with. I was spaced out and on the verge of tears all day every day. I thought I was on the verge of a nervous breakdown and I have never in my life had anything like those feelings. I also started to lose weight, I had no appetite for food. I took no pleasure in anything. I lost most of my pubic hair (after it had FINALLY grown back in). I quit the tamoxifen. I decided that I would rather have my sanity back and my quality of life and risk a re-occurrence. I had so much anxiety that I could not bring myself to go back to the ONC. I saw the surgeon and had my mamo which was clear, but I can't go back to the ONC. I just want to live my life to the fullest every day and feel like myself again. There is so much controversy about all of these drugs that I don't know what to believe but in my gut I know I want to be whole and I can't if I take something that makes me sick.
After being off the tamoxifen for 2 months, my hair has improved and the pubic hair has stopped falling out. I feel like myself again whole and healthy and that's what counts.0 -
Taking Tamox since April 1, 2011october7 said:Quit too
I started Tamoxifen in Jan after chemo and rads. Chemo was just a small % of benefit. Had I known ahead of time how it would devastate my body I would not have done it. The tamoxifen was suppose to be my best bet. I took it for 3 months and suffered so much depression and yes, hair thinning (after it had FINALLY started to grow back in, it stopped growing). I also experienced blurred vision, muscle spasms in my back, joint pain and a feeling of nervous restlessness that I could not cope with. I was spaced out and on the verge of tears all day every day. I thought I was on the verge of a nervous breakdown and I have never in my life had anything like those feelings. I also started to lose weight, I had no appetite for food. I took no pleasure in anything. I lost most of my pubic hair (after it had FINALLY grown back in). I quit the tamoxifen. I decided that I would rather have my sanity back and my quality of life and risk a re-occurrence. I had so much anxiety that I could not bring myself to go back to the ONC. I saw the surgeon and had my mamo which was clear, but I can't go back to the ONC. I just want to live my life to the fullest every day and feel like myself again. There is so much controversy about all of these drugs that I don't know what to believe but in my gut I know I want to be whole and I can't if I take something that makes me sick.
After being off the tamoxifen for 2 months, my hair has improved and the pubic hair has stopped falling out. I feel like myself again whole and healthy and that's what counts.
I've been taking Tamoxifen since the beginning of April. I was actually told to take it while I was doing radiation. I started Tamox on April 1 and did 33 rads from April 18 until the very first week of June. I did experience some moodiness at first, a lot of joint and muscle pain, which I still have, and some pelvic pain. For me, it's hard to know what symptoms are from which treatment because they all kind of ran together. I've been to the gynocologist for an ultrasound of the uterus and apparently my uterus has gotten smaller so I'm not experiencing any issues with that. My hair is growing slowly but it is coming in and it seems thicker than before.
I really think we all just bring such different status to the table so it's hard to know which side effects are going to hit you hard and which ones won't. I would try to work with the Tamoxifen. Get baseline tests to monitor the risk for uterine cancer. Even if you develop it, it caught early it can be treated. As far as depression is concerned I would try different drugs and possibly even other non-drug therapies to see if that helps. You have to decide what's best for you.0 -
...NJMom10 said:Taking Tamox since April 1, 2011
I've been taking Tamoxifen since the beginning of April. I was actually told to take it while I was doing radiation. I started Tamox on April 1 and did 33 rads from April 18 until the very first week of June. I did experience some moodiness at first, a lot of joint and muscle pain, which I still have, and some pelvic pain. For me, it's hard to know what symptoms are from which treatment because they all kind of ran together. I've been to the gynocologist for an ultrasound of the uterus and apparently my uterus has gotten smaller so I'm not experiencing any issues with that. My hair is growing slowly but it is coming in and it seems thicker than before.
I really think we all just bring such different status to the table so it's hard to know which side effects are going to hit you hard and which ones won't. I would try to work with the Tamoxifen. Get baseline tests to monitor the risk for uterine cancer. Even if you develop it, it caught early it can be treated. As far as depression is concerned I would try different drugs and possibly even other non-drug therapies to see if that helps. You have to decide what's best for you.
I opted out of taking tamoxifen and anything else for that matter. I have way too many permanent side effects from the chemo and I really don't want to consider any more.
Have you thought about tamoxifen's less evil cousin: Raloxifene
I understand it doesn't have near as many uterine cancers and such.
Here's a link to the results of the STAR* trial:
http://www.cancer.gov/newscenter/pressreleases/2006/starresultsapr172006
Maybe bring it up at your next appointment? Couldn't hurt.
*Study of Tamoxifen and Raloxifene0 -
A lot of pink sisters dodbhadra said:I need to do more research
I;ve been feeling very anxious about these decisions that I will need to make after surgery and rads. Just today I was talking with my therapist about needing to do more research for myself on side effects vs effectiveness of tamoxifin, AI drugs, ovary removal, etc.
I;m sorry to hear some of you are having side effects, at the same time I am glad to read everyone;s comments here, since it helps me to know I am not the only one struggling with these issues. Since my dx in Dec the amount of new information about cancer and cancer fighting drugs that I have gotten is just amazing - definitely much more than I EVER wanted to know. As tjohn son said, sometimes it feels like we are damned if we do and damned if we don't. It's all about the tradeoffs, I guess.
For some reason I was not as afraid of the chemo as I am of the drugs that I would take afterwards. I am trying to remind myself that I am lucky that I am 100 ER+ so that I do have the option to take drugs to reduce my risk. But I am still very afraid of the side effects. Maybe it is just the cumulative anxiety about everything that is getting to me.
Laura
A lot of pink sisters do take tamox and many don't. We all have to decide what is best for us, with our oncologist's advice ofcourse. For some, the %'s didn't add up to risking taking it.
Good luck,
Megan0 -
updatejendrey said:...
I opted out of taking tamoxifen and anything else for that matter. I have way too many permanent side effects from the chemo and I really don't want to consider any more.
Have you thought about tamoxifen's less evil cousin: Raloxifene
I understand it doesn't have near as many uterine cancers and such.
Here's a link to the results of the STAR* trial:
http://www.cancer.gov/newscenter/pressreleases/2006/starresultsapr172006
Maybe bring it up at your next appointment? Couldn't hurt.
*Study of Tamoxifen and Raloxifene
My oncologist agreed that I need to get the depression unde control before I go back on tamoxifen. She perscribed abilify. I read the side effects when I got home and decided not to take it. I don't need another pill...already on effexor. If I am off the tamoxifen and take care of myself by eating right and running, I don't have near as bad the depression. It's the tamoxifen which causes me to feel so depressed, and fatigued. Anyway, thanks for all the replys and support. All these decisions make my head spin. I just want to go back to being the me I was before all this :-(0 -
Difficult Decisions
Dear Kelly,
Anything we do connected with the cancer and the prevention of cancer carries a consequence. What do I value? I value quality of life. I value the right to make a decision, even though it may not be the popular decision or the "right" decision.
There are many women who have no side effects to Arimidex, Fermara, or Tamoxifen, but then there are women who do have side effects to these drugs.
No one can relate to the intensity of those side effects unless they have experienced them. We are all different and we all react in varying degrees.
I had side effects to Arimidex, then Anastrozole, and finally Femara. After being on Arimidex for 6 months, the side effects exploded. Anastrozole's side effects waited one month, and then appeared. Femara's side effects took 2 weeks to appear. From my experience, it takes more than one month for the drug to leave the body. In my case, it is many, many, many months. I am curious to see what my body will feel like after being off the drugs for one year.
I am 70 years old, basically in excellent health, and debated 2 months on whether I wanted to take Tamoxifen. One day I said, "yes" and then the next day I said, "no". I was a yo-yo. My final decision, for me, was NO after discussing it with my hematology oncologist. She will continue to test my blood every 3 months and examine me every 3 months. My surgeon will see me twice a year as opposed to once a year. My radiation oncologist sees me twice a year.
I feel I am fairly well covered for body examinations. I am also pursuing other holistic methods.
Kelly, do not have fear in your body...that is a negative. Decide for yourself what is best for you. Be positive. Positive is powerful.
Lots and Lots and Lots of Hugs,
Janelle0 -
Kelly
it is difficult to know what's best. I was depressed going through perimenopause and gained 80+ lbs over a couple of years. At 5' tall I was dealing with the weight, sadness and menopause issues all at once. Recently my gyn tried my on a few different anti depressants to help with the hot flashes but nothing did so I'm not using anything. I suffer through them. Only you know how you're feeling on or off the drugs.
{{hugs}} Char0 -
Different Ballgame, you areDifferent Ballgame said:Difficult Decisions
Dear Kelly,
Anything we do connected with the cancer and the prevention of cancer carries a consequence. What do I value? I value quality of life. I value the right to make a decision, even though it may not be the popular decision or the "right" decision.
There are many women who have no side effects to Arimidex, Fermara, or Tamoxifen, but then there are women who do have side effects to these drugs.
No one can relate to the intensity of those side effects unless they have experienced them. We are all different and we all react in varying degrees.
I had side effects to Arimidex, then Anastrozole, and finally Femara. After being on Arimidex for 6 months, the side effects exploded. Anastrozole's side effects waited one month, and then appeared. Femara's side effects took 2 weeks to appear. From my experience, it takes more than one month for the drug to leave the body. In my case, it is many, many, many months. I am curious to see what my body will feel like after being off the drugs for one year.
I am 70 years old, basically in excellent health, and debated 2 months on whether I wanted to take Tamoxifen. One day I said, "yes" and then the next day I said, "no". I was a yo-yo. My final decision, for me, was NO after discussing it with my hematology oncologist. She will continue to test my blood every 3 months and examine me every 3 months. My surgeon will see me twice a year as opposed to once a year. My radiation oncologist sees me twice a year.
I feel I am fairly well covered for body examinations. I am also pursuing other holistic methods.
Kelly, do not have fear in your body...that is a negative. Decide for yourself what is best for you. Be positive. Positive is powerful.
Lots and Lots and Lots of Hugs,
Janelle
Different Ballgame, you are very wise. Thank you for such heartfelt words of wisdom. Positive IS powerful and I value quality of life too. A great book if you are looking into holistic methods, Anti Cancer A New Way of Life by David Servan-Schreiber, MD, PhD.
{{{HUGS}}} to us all who are faced with these choices and thanks for all your replies and help!!0 -
Hi Kelly,kellyk123 said:Heather, if your tumor was
Heather, if your tumor was Er -, I wouldn't think you would need to be on tamoxifen. Tamoxifen only works on people who were Er +. 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 get increasingly more depressed, have NO energy, and my hair gets thinner and thinner....and I already have VERY little since the chemo. I am just wondering if anyone who was Er + made the decision to stay off it.
It sounds like
Hi Kelly,
It sounds like you've just been through the ringer. I'm so sorry. I'm not where you are right now, but SO get it about being a totally different person. I feel and look older. My hair has come in pretty slow, although at this point I don't think there's a problem (thank you Lord). It's been four months since my last chemo ( Cytoxan & Taxotere), and I have almost two inches of salt & pepper hair. WHAT'S up with THAT old lady in the mirror??!! Can't wait for the six month mark so I can at least color it.
Anyway, I'm wrestling with my MO about taking HT's. More than likely, I won't be taking them. To muttle through life (I'm 48) with joint pain (I have arthritis now), fatigue, depression, hair thinning (are you kidding??!!) and on and on is inconceivable. Plus there are no guarantees that I won't have a recurrence anyway.
My thought is that I took biodentical hormone replacement for menopause. It increased my estrogen and either significantly sped up the growth of my tumor or caused it. The latter not likely. I had my estrogen levels tested last week. They are low. So with nothing to increase my already low levels...I think I'll take my chances. Please don't base your decision on what I've decided. It's something we have to pillow our own head on every night. God bless you Kelly. Let us know what you decide. BTW are you a candidate for aromatase inhibitors? Hugs and definate understanding, Victoria0
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