Tamoxifen

AK1971 · July 2014

Hello,

I decided to stop taking Tamoxifen due to many SE (last pill was taking on May 15, 2014...took it for one year) I would like to hear from others who did the same. How do you feel? Did you experience withdrawal symptoms? I did...and still do. However, mentally I am much better, feels like I am myself again.

kdrez · July 2014

I took Tamoxifen and Arimidex (switched) for three years and stopped months ago. I tried tamoxifen again this week and stopped again. My doctor isn't happy and wants me to try Femara. This is the best I have felt in years. Tamoxifen caused me anxiety, slower cognitive skills, memory issues, bones and joints hurt and my neuropathy was worse. Hot flashes were bearable, but I didn't like the daily nausea. My doctor offered all kinds of meds to counteract against the side effects, but I refused. I already have autoimmune disease, neuropathy and gastroparesis from chemo. It was diffucult to do Tamoxifen. Had I taken all the other medicines, it might have helped, but I don't believe in taking so many medicines. Tamoxifen required me to have my ovaries taken out and a DNC due to excessive bleeding for a month. Arimidex was a depressing drug, took only for a couple of months and quit because I was getting so sad. And again, I was offered medicine to feel better. Everyone is different and some get side effects and some don't get any. Unfortunately, side effects liked me! Next week my doctor will offer something else to try. I know that these drugs are to stop the growth of cancer and knock them down, but I just want to be happy with my grandchildren. Who know's where this incredible jouney will take us! . Best wishes....

edwards750 · July 2014

I started out with Armidex. No issues. However, I was DX with osteoporosis so I had to take another med to offset Arimidex because it attacks the bones. Was k until all the meds I checked on were 100 a month so my ONC switched me to Tamoxifen a few years ago. Hate it. Have some of the same symptoms and throw in weight gain. I'm stuck for another 1 1/2 years. I'm going to suck it up because of the added "protection" from a recurrence. There are a number of women who have debilitating SEs from it and they stopped taking it 2. I think there's a specific topic on this website. Gotta admit I would b afraid to take nothing; there are other meds out there. Thing is you gotta b able to live and function.

Diane

Nutmeggerwith1 · July 2014

I just stopped taking Tam after 3 years of debilitating side effects. it's been only 2 weeks and I feel relief from some issues. I'm wondering how long I will have to suffer thru this med before the SEs are gone. What should I expect?

AK1971 · August 2014

Nutmeggerwith1 hello,

It will be 3 month on Aug 15 as I stopped tamoxifen...However, still have some of the withdrawal symptoms...but it gets better everyday.

Bounce · August 2014

Can you please share specifically what the withdrawal symptoms have been for you?

I didn't realize that there were any!

AK1971 · August 2014

After I stopped tamoxifen...hot flashes increased (they are gone now), legs pain was very bad for a month or so, weight gain... joint pain is still there, however, very mild... I also exercise daily...at this point I am not really sure where the pain comes from

tangandchris · August 2014

Hi everyone,

I am supposed to start taking Tamoxifen in about a month and I am concerned about SE's. Anything that has to do with hormones has always been an issue for me. I don't relish the idea of being on this medication for 5 years and now I see some of ya'll talking about withdrawel after stopping. ugg!!

I wonder if having ovaries removed would bypass having to do hormone blockers?

I will be making another list of questions for MO at my next appointment, that is when she is supposed to get me started on Tamoxifen.

ncollett · August 2014

I also have to start Tamoxifen soon and am also concerned about SE. I know its a necessary evil and would like to know more about how to deal with the SE.

edwards750 · August 2014

I have been taking Tamoxifen for several years. Started out with Arimidex but was switched by my ONC due to osteoporosis. Arimidex attacks the bones.

It's no walk in the park but for me it's manageable. Hot flashes, lack of concentration, weight gain and joint pain. There are women who suffer debilitating effects from the drug so it's def not one size, fits all.

I never hesitated about taking it for obvious reasons but to be fair I might have decided otherwise if I simply could not function because of it. Thing is there are more than a few drugs the ONC can prescribe and ones to help you deal with the SEs.

Diane

Twinmar · August 2014

AK1971 - I took Tamoxifen for exactly one year. I lost a few pounds and had no side effects right away. I took my pill in the morning with breakfast. About 6 months in, I noticed my hair was thinning, my gums began to bleed, I had cramps in my toes (usually during the night), I had "extra" hot flashes (I'd been having them so long they were the least of my worries), then I started having scary dreams, my mind was just a little 'off' - my boss noticed this. The worst was my twitching muscles in my legs-I saw a neurologist who said I was fine. I went to my Onc and said I can't take this. I went off with her blessing. When I saw a new Onc 6 months later, she said I should never have been on the drug due to my diagnosis - very tiny low grade DCIS-she told me Tamoxifen is for invasive cancer. I just don't understand the difference of opinion in doctors. My muscles are still twitching a bit and my gums will bleed now and then but for the most part I feel so much better being off the drug. I had 7 weeks of radiation after my lumpectomy and for two years had mammograms every 6 months and was just put on a yearly schedule.

Youngwildnfree · September 2014

Hi Everyone,

I have been taking Tamoxin since the end of March. A month later I was experiencing really bad

hot flashes. I would get up to four a hour. My Onco put me on Effexor. That helps with the mood swings

and hot flashes right away. It's a very strong drug. I couldn't work for two days. I was super dizzy. I am 31,

and being forced into menopause. My newest side effect is my foot has been inflammed for 7 weeks and docs say

it's not the meds. I don't believe it. I have never had foot issues and never hit it or hurt it. It is the same symthoms of gout,

but just inflammed. I have been so tired that I haven't wanted to do anything but sleep. This isn't like me at all. I need help!

Anyone else experience the foot issue and tireness/weakness?

gentianviolet · September 2014

Hi Young - Yes, I definitely had trouble with foot/ankle pain while on Tamoxifen. Orthotics helped but it was never resolved totally. And I was very very fatigued while on it. With some women the side effects diminish with time, but for me that never really happened. Some days were better than others and the pain issues seemed to move from place to place on my body. Good luck, I hope you find some answers. Sending good thoughts

Youngwildnfree · September 2014

Thanks for the encouragement Gentianviolet!

IDunnoWho · September 2014

can someone with a bit more knowledge than me give me some info to use as supporting arguments in my discussions with my oncologist? These are my side effects, and her answer is listed after each:

1. Mood swings- yes, this is a side effect.

2. Weight gain, about 5lbs. In two months and it all seems to be right over my stomach- a little but not this much.

3. Dry, itchy skin- not a side effect of tamoxifen.

4. Memory loss, cloudy thinking- not a side effect of tamoxifen.

5. Overwhelming hot flashes- yes, this is a side effect.

6. Tinnitus and hearing loss- no, not a side effect.

7. Vision changes- not a side effect.

8. Digestive issues (severe constipation changing to severe diarrhea)- no, not a side effect, have you considered IBS?

9. Hair loss: it's not falling out all at once or in hands full, but I am losing it a lot faster than normal and it clogs the drain- not a side-effect.

Has ANYONE else here been told the same thing or experiencing the same side effects since starting tamoxifen? From what I've read, the side effects of tamoxifen seem not to be fully researched or those that are don't seem to be universally accepted by the oncologists prescribing it.

Anyone with information would be welcome to chime in here because I'm honestly feeling like I'm losing my mind.

Thanks very kindly from a tiny town in Saskatchewan, Canada.

Jennie93 · September 2014

I too have a MO that tries to deny the SEs of every drug she gives me. Pisses me off big time!

Weight gain - absolutely!!! Just read here a little bit and you will see how common that is. My experience is typical. Never had a weight problem in my life, stayed the same all through chemo, rads, etc. then started on tamox and it started creeping up and up... 25 lbs in the first year! And lots of it in the belly where I never had fat before! I track my calories, keeping under 1000 a day, and exercise daily. Still gaining. Beyond frustrated!!!! MO says "well, the chemo put you in menopause, that's some of it".

Vivid dreams - no explanation from the docs but many do report this when on tamox. I have had this too.

Vision changes - a known side effect! Even listed in the official drug info, I believe. The scary part about that one is, some of the damage can be permanent.

Memory and brain issues - well known to happen with all of the estrogen blocking drugs.

Leg and foot cramps - another one the docs will deny, but I started getting them really bad soon after starting on tamox, bit of a coincidence, hmm? I read somewhere that magnesium can help, so I take 500mg/day and they are better, but not gone. Ouch!

Not sure about hearing issues or digestive issues. Maybe someone else will know.

Hair loss - for sure the AIs are more notorious for that, but I have noticed, like you, somewhat more than normal coming out when I wash it, but not alarming amounts.... Yet.

The worst SE for me has been joint pain. When it first started getting bad, my MO said that the AIs are known for that, but not tamoxifen. Liar. The next time I saw her and was in so much pain I could barely move, she changed her tune. Offered prescription strength vitamin D, said it often helps. I think it's doing some good.

No, you are NOT crazy, and yes, it is totally normal for the docs to deny it all. They want you to keep taking it, that's all they care about.

gentianviolet · September 2014

Hi IDunno

I started tamoxifen in Jan. 2010.

I had dry and itchy skin that I slathered with coconut oil, it seemed to help.

Don't think I had unusual vision changes even though I had to get a new prescription for my glasses, however my eyes were so dry that I had a tough time in the winter without much humidity in the house. We set up three different humidifiers and kept them running all winter long and it helped.

Had hot flashes but used a small fan set up by my bed to turn on when they got bad. Could deal with them during the day while I was up and busy.

Don't recall any bad mood swings except depression from the joint pain. Nothing much seemed to help the joint/muscle pain, some days were much better than others.

I had a small weight gain, nothing extreme.

I definitely had memory issues, had to put small post it notes every where just to remember usual stuff.

I was constipated but then I think it was due more to the calcium I took to try and stop the foot and leg cramps. I also took and take magnesium but the calcium seemed to have a better impact on the cramps.

And last of all, I definitely had hair loss. Lots and lots of it. After about 8 months it slowed and I could see new little hairs coming in.

I quit the tamoxifen just 7 weeks ago and I have already noticed a difference. After about two weeks I felt like somebody found my brains and put them back into my head. I could focus again and I hadn't really been able to do that since Jan. of 2010. So I was on it 4 and 1/2 years and finally decided that the joint/muscles pain was just too much. I have only had one "jump out of the bed in the middle of the night to walk off a foot cramp" episode. Still have some hot flashes but then I always have more in the summer when it's hot. And to my surprise the joint pain has much improved, not gone, but much better. All the docs I spoke with said joint pain was NOT from tamoxifen.

This has been my experience..........hope it helps you. Sending good thoughts.

ncollett · September 2014

If joint pain is not from Tamoxifen then why do so many people who have it have joint pain? Drs always say dumb things like this shouldnt hurt or this is nothing. My question to them is how do you know have you had a mastectomy, do you take tamoxifen?

Mouche · September 2014

I can relate to a lot of this and will be speaking about it to my MO next month, my SE are....

Brain fog

Hot flashes (not to bad)

Foot and ankle pain (so severe I can barely walk at times)

Neck and shoulder pain ( really severe right now)

Joint pain ( which I had a little to begin with, but not to the point is is now)

Fatigue (this drug makes me sleepy and tired ALL of the time, I have to take it at night)

Weight gain ( all in the middle)

Leg cramps ( this just started, but can be really bad at night, wakes me up out of my sleep)

I was trying to give this drug a chance to see if I would get use to it, and with only 2 months in I am ready to give it up, I need my life back. I am a young active 54 year old but on this drug I have become a non-active feeling as though I am 80 year old.

AK1971 · September 2014

Hello All,

On September 15 will be 4 month as I stopped taking tamoxifen. First I want to say that mentally I am good, but still have a fear, this probably never will go away. However the mental fog, which was so bad is gone. The first two month I was okay, however, with withdrawal symptoms...well, now I have extremely bad PMS symptoms...depressed, sore breasts, mood swings...I guess my hormones got back into my system and I am trying to adjust. I also, trying to stop taking Xanax by decreasing the dose...some days it works, the other days it doesn't... Really hope that in a few month this PMS symptoms will go away lol. I went to see my MO, and asked if I should have mammograms every 6 month...they said no...only once a year. I was asking if I should do preventive mastectomy, the answer was no as well. Well, maybe one day I can forget this cancer experience ...but now, I take one day at a time, trying to be positive, exercising daily, eating healthy (oh...forgot to mentioned, still retaining water, especially before my period).

Good day to everyone!

rettemich · September 2014

I am just into month 5 of Tamox. OMG Horrible stuff!! When I started in May my hormones were crashing SO hard I was a complete mental basket case. My hair was falling out. Started to gain weight around the belly, still am. Consistently hot! Not even flashes, I felt like I was just a ball of slime all the time. It has let up some since I started doing acupuncture, and started taking Black Cohosh. Leg and toe cramps, oh yeah getting up in the middle of the night to walk it out. Vivid dreams, also taking Effexor which I also hate so not sure which one is causing that. Makes me hungry All the fricking time. And I have to get my eyes checked but That is a side effect.

Something that is suppose to help reduce the estrogen that stores in fat adds more fat for the estrogen to build up in.

I did one of those test online about risk factors and this will add .9 months to my life. Ummm

I have been so tempted to go off of it. I just want to feel normal.

Here is a link to SOME of the side effects they don't like to discuss.

Gov. Tamoxifen

Here's a supplement to the Dotcors PDR

PDR supp

Tamoxifen

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