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Quitting Tamoxifen

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

Hi All,

I started Tamoxifen (after chemo and radiation) in January 10. I was taken off of it for 3 months in June 10, because my hair was coming back in fine, and sparse with huge bald spots ant he docs didn't know why. They said I could try going off the tamoxifen to see if that was the cause. My hair stayed thin and sparse so I went back on around Dec. 10 and stayed on until end of May, '11. I started to feel more and more depressed and was already taking a high does of effexor. My hair never came back, I have gained weight despite all my exercise and healthy eating, I feel fatigued and very depressed.

I am also worried about the side effects of the tamoxifen....uterine cancer, blood clots, stroke...etc. Is it worth it to take? Anyone refuse tamoxifen? I can't go on this depressed. Plus....my hair, two years out, is not normal at all. You can see my scalp and I still can't go out without something covering my head.
Anyone else experience this??
Kelly

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

Wow, now that's scary. I will probably start tamoxifen next month, finishing my rads first. Don't like hearing about these kinds of side effects. Sorry no help from me Kelly, but I just wanted to give you a {{hug}}.

Lorrie

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I got the prescription, but, I still have not taken it. It is my choice, and, for now, I just don't want to.

Hugs, Kylez

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

I'm post menopausal so never did the tamoxifen, but I had a similar experience with femera. My hair came back in pretty much same as before, but I had a whole list of other side effects. 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.

Also, check to see if there's something you can take instead of the tamoxifen.

Hope everything starts looking up for you.

marge

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

Ya know, Marge, my onc. said the same thing to me about tamoxifen, that it is more important than the chemo....so why did I get the chemo then?? 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 don't mean to sound so negative, but I have been reading the book, What Your Doctor May NOT Tell You about Breast Cancer, and it does make you wonder. 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. They say it is only a 1% chance of getting the uterine cancer, but admit it does increase your chances, but that is what they said about my hair not coming back and I beat those odds too. Scream, breathe....okay.....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!!!!!

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

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.

Lots of love and support coming to you.

marge

ps I did feel the same way when my MO told me about the importance of post treatment drugs. I'd have gladly given up the golden opportunity to feel like I was the walking dead during chemo.

mjjones453
Posts: 125
Joined: May 2010

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! Mary

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

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.

Good luck!

Lex

disneyfan2008
Posts: 5383
Joined: Oct 2010

without issues...then thickening of uterus and then bleeding....just had totall hystertomy 3 wks ago today due to side effects!

I have to miss work 2 more weeks-total of 5 wks...I go back to my oncologist tomorrow and I am 99% sure i'll be put back on tamoxifen tomorrow...

Denise

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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.

Double Whammy's picture
Double Whammy
Posts: 2296
Joined: Jun 2010

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. Right. 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. .

Suzanne

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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...it sure isn't helping!! Yes...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!!!

disneyfan2008
Posts: 5383
Joined: Oct 2010

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...

CypressCynthia's picture
CypressCynthia
Posts: 3974
Joined: Oct 2009

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? Absolutely! It is an individual decision, but never, ever doubt that it saves lives. I am living proof!

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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!

pattimc
Posts: 432
Joined: Dec 2009

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.

It might be time to ask for a little help....no shame in it!

Best to you!

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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 :-(

pattimc
Posts: 432
Joined: Dec 2009

Sorry, Kelly...hope things get better for you soon!

Patti

disneyfan2008
Posts: 5383
Joined: Oct 2010

after being off it 3 mths and post hysterectomy...

Lynn Smith
Posts: 1265
Joined: Mar 2011

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

Double Whammy's picture
Double Whammy
Posts: 2296
Joined: Jun 2010

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 . . .it's difficult to tell with me right now, but I think you have more hair than I do. 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.

Suzanne

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

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. should be able to find something to help with the depression.
Dee

CypressCynthia's picture
CypressCynthia
Posts: 3974
Joined: Oct 2009

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.

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Wishing you all the best with or without tamox.

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

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

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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.

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

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*
Heather

madsters1
Posts: 120
Joined: Oct 2011

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, Victoria

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Let us know what you find out on the 22nd. Good luck!

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

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

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

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*
heather

tjohnson2310's picture
tjohnson2310
Posts: 168
Joined: May 2010

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.

dbhadra's picture
dbhadra
Posts: 344
Joined: Jan 2011

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

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

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,

Megan

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

Laura -- Good to see you. Your face crossed my mind recently and was just wondering how you were doing.

october7
Posts: 9
Joined: Sep 2010

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.

NJMom10
Posts: 176
Joined: Oct 2010

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.

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

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

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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 :-(

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

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

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

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!!

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

I just read your post, sorry I missed it.

I see you saw your Onco. and both of you have made a decision. Such a difficult path to be on, isn't it? You continue to recover and feel better sister. I too had depression with tamox, really bad. I was never depressed before. Ever. And this felt so weird and bad. But it went away after a few months. I guess eventually the body agrees to it. I agree quality of life is very important. So you take care of your soul first and hopefully you'll be able to continue treatment.

Good luck and hugs to you.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

My oncologist (a male breast cancer survivor) stated that a good diet with exercise can be very helpful if a patient decides against or can not take tamoxifen. Anyone else hear something similiar?

survivorbc09
Posts: 4378
Joined: Jun 2009

I've never heard that Cathy, but, a good diet and exercise is always helpful no matter what.

Jan

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

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}} Char

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I think you should look into changing your antidepressant as it clearly isnt working. I am on lexapro and they changed it to genetic and man did I take a dive. Once it was changed to brand name I was back to normal. I got real insight into how I am handling the hormonal fluctuations. Between the chemopause and tamoxifen. I had lost alot of weight with chem oand am putting it back on. I know I can lose it, but its hard. Exersize helps to deal with issues and also my achy joints. You will feel better once you get a med that works. Everyone has different chemistry. Then you will be motivated to work on the weight thingg and things will fall into place.

KC1971
Posts: 2
Joined: Nov 2012

Hi..see the date on this post and hope your still logging on..I have struggled from day 1 about taking this pill! I had no issues saying ok to a double masectomy and 4 rounds of Tax/Cytoxin...as gross as it was i got through it....i kicked and screamed about taking this after chemo!! I finished March 2012..and waited till july to start tamox....i was in chemopause so the hot flashes were ok....fast forward to September ..my wrists were swollen and painfull even to push a door open...my hair growth slowed down..the discharge became intolerable to the point of using tampons to enjoy a walk...the hot flashes even worse..and sexually ....well..numb...and lets not talk about the fatty gut..I said..F it in October and stopped...3 weeks later i started bleeding...im thinking it was my body getting rid of the uterine lining that had been building in that short time..after this...hot flashes all but stopped my emotions came back the discharge stopped my wrists have no pain ive lost the bloat..sexually i can feel again...my eyebrows are finally filling in,my hair too
I'm happy again...point is tamoxifin has a been a difficult decision ..i know how I feel on it and i know how i feel OFF it......what did you decide to do?

KC1971
Posts: 2
Joined: Nov 2012

Hi..see the date on this post and hope your still logging on..I have struggled from day 1 about taking this pill! I had no issues saying ok to a double masectomy and 4 rounds of Tax/Cytoxin...as gross as it was i got through it....i kicked and screamed about taking this after chemo!! I finished March 2012..and waited till july to start tamox....i was in chemopause so the hot flashes were ok....fast forward to September ..my wrists were swollen and painfull even to push a door open...my hair growth slowed down..the discharge became intolerable to the point of using tampons to enjoy a walk...the hot flashes even worse..and sexually ....well..numb...and lets not talk about the fatty gut..I said..F it in October and stopped...3 weeks later i started bleeding...im thinking it was my body getting rid of the uterine lining that had been building in that short time..after this...hot flashes all but stopped my emotions came back the discharge stopped my wrists have no pain ive lost the bloat..sexually i can feel again...my eyebrows are finally filling in,my hair too
I'm happy again...point is tamoxifin has a been a difficult decision ..i know how I feel on it and i know how i feel OFF it......what did you decide to do?

dkvine
Posts: 2
Joined: Mar 2013

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

 

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I hope that when you stop tamox that your hair will come back like you want it too dkvine.  I know some said that theirs came back just like before, some haven't had much luck, and, some have said it came back differently, thinner.

Everyone is different and I just hope yours will come back just the way you want it. 

Keep us posted.

Hugs, Leeza

dkvine
Posts: 2
Joined: Mar 2013

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

 

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