Tamoxifen

Breast Cancer
#1

Hey to all! 

 

Are any of you ladies on the tamxifen?  I have been on it for 3 weeks now.  After taking it for 1 week my neuropathy got worse so my oncon put me on a pain med.  But now I am having joint and muscle pain also.  Legs want to cramp up on me when I am trying to walk (I have been walking 5 miles everyday) But the tamoxifen is making that harder to do.  ALso hot flashes of course,  Taking vitamin e for that so far hasn't started working yet. Oh and now at night I get the leg muscles cramping on me.

I have already tried the Aromasin and Arimidex they were terrible.  So tamoxifen is my last chance.  It is like I told my oncon if the tamoxifen starts giving me lots of pain I will just stop it,  YOu go through the pain of chemo and you sure don't want to go 5 more years in pain and not be able to enjoy life.

Sfj

#2

Hi sfj:  It's Tinapuppy.  I just joined this forum yesterday.  You said you were having a real problem with tamoxifen, and that arimidex was worse!  I have only been on arimidex and the side effects are pretty bad at times.  Most of the articles I've read say that tamoxifen is harder to handle, but you proved that wrong.  The only thing I've noticed is the longer I'm on the med, the easier it gets to handle.  There are good days and bad days. My family tries to be real supportive, but only someone going through this really knows how we feel.  it's not just the side effects from the meds but the emotional stress and fears we suffer trying to cope with this disease.  Well I hope things get better for you.  Hang in there and remember we all care about each other.

#3

I was on tamoxafin for about 2 years.  I had the same side effects but was able to deal with it.  However, my cancer came back which means the medication didn’t work for me.  I ended up having to have a mastectomy.  That was fine.  I dealt with it no problem.  However, after the mastecomy they put me on another med.  I don’t rememer the name.  It was a shot I got once a month.  I tried that 2 months and the side effects were a horror.  I had blackouts and vertigo and memory loss.  It scared me to death.  My next move was to have my ovaries removed.  Doing that stopped me from producing estrogen.  This solved my problem.  I get hot flashes sometimes but I can deal with that.  At least I’m not taking any more crazy drugs and I feel so great now.  My neuropathy is even better now.  its not gone but its much better. 

#4

Thanks gals for all your info!!!  We are all warriors and will survive the battle!

 

Steph

#5

Hi everyone,

I just started taking Tamoxifin about 1 week ago.  I haven't had any side effects at all yet.  But now I am terrified.  How quickly did you start to notice the difficulties?  I am not worried about hot flashes, but the leg cramping sounds horrible.  I do not want to put my life on hold for any longer.  

Susie 

#6

Hi Suzie,
This is my first response to you, and I’m not sure of all what you endured
previous
to taking Tamoxifen. I can tell you that Arimidex caused me to have
unbearable body pain -
not just in the joints, but the entire body. It’s as if I’ve been thrown
out a two-story window every day, front and back sides - no kidding. The dr.
is finally switching to Femara, as he said it’s
the same results without as much pain. I’m only 51 and was diagnosed last
July after my
former OB/GYN told me that the lump was ‘nothing to worry about’ and that
she could tell the differernce in a lump by feeling it as to what it is. I
heard this from her for over six years. I have been taking monthly Lupron
injections along with daily Arimidex. So far, it has shrunk the tumor
by about 80 percent - not small enough, however, for a lumpectomy yet. I am
terrified of AC treatment. I want to get CMF instead, so I will start that
in about six weeks. I wish that I could find a credible website to compare
the two. AC can cause horrific permanent side effects.
Where do you live? Also, I wasn’t sure what you meant by ‘not wanting to
put your life on hold any longer’. I will keep you in my prayers. Maria

From: Suzie bc-cpt1712@lists.careplace.com
Reply-To: bc-cpt1712@lists.careplace.com
To: mariasatha@hotmail.com
Subject: Re: [bc] Tamoxifen
Date: Sun, 22 Apr 2007 11:38:36 -0400

#7

Hi Maria,

I was wondering if you have tried the message boards on the Koman site there are so many kind women that you can talk to. I love this site and that one, they are my daily "vitamin". They each help me through my day. Just a thought, take care of yourself,

HUGS:)

Monique

#8

Hi Monique, I’ve actually talked to some reps personally on this subject,
but I’ve really
had no luck with this problem.

From: fourkmom bc-cpt1712@lists.careplace.com
Reply-To: bc-cpt1712@lists.careplace.com
To: mariasatha@hotmail.com
Subject: Re: [bc] Tamoxifen
Date: Sun, 22 Apr 2007 17:30:45 -0400

#9

If you go to the message board and make a posting of your question, you will get response of some very knowledgeable women. Alot of survivors respond on this web site and even some nurses. It might be worth a look. There are just so many women on the board all the time, its worth a try, you might find what you need or atleast some comfort.  Good Luck,

Monique

#10

I was fortunately/unfortunately able to be put on Femara, because I am
considered postmenopausal. I had some similar side effects that tamoxifen
has but have worked through them and live with the discomfort, I refuse to
give in! Don’t be afraid to ask your doctor for medication to help with any
pain or other side effects that you may have. I didn’t want any more
medication than I had to have, but sometimes you just have to. Stay
positive. As you know, there are lots of us out here to listen and support!
teachermom
----- Original Message -----
From: “Suzie” bc-cpt1712@lists.careplace.com
To: bsiems@esu8.org
Sent: Sunday, April 22, 2007 10:38 AM
Subject: Re: [bc] Tamoxifen

#11

Susie,

It was about 2 and 1/2 weeks into taking the tamoxifen that I started having leg cramps. You may not have any problems though, Everyone reacts differently.

THe leg cramps have started decreasing for me thank goodness, The only problems now is of course the hot flashes and fatigue! I see my oncon tomorrow so had my blood test this morning. I am kind of hoping it may show I am low on iron,so at least there will be something we can do about the fatigue! If it is the tamoxifen,oh well hopefully that will get better also!

Hope you have good luck with the tamoxifen!!!

sfj

#12

Hi Everyone,

Thank you for all the advice. So far so good. I have stage IV breast cancer at age 32. I am hoping that my young age will be a benefit. It sounds like such a miracle drug, but my doctor predicted that I would not have any real side effects, but hot flashes. He never mentioned body aches. Or fatigue. It can be hard to tell sometimes if you hurt because of your surgery or because of something else. I am only nine weeks out, or so. Time flies when you are having fun. And boy are we.
Suzie

#13

susie,

alot of these dang oncons really tick me off!!! Why they won’t admitt side effects to all these drugs I just don’t know! You could be one of the lucky ones and not have any and I hope so! But usually you will have some of the side effects and sometimes they get better when your body adjust to the drug and sometimes they can get worse. Not that we don’t have any recourse but to take them,but I just wish the doctors would admitt to the side effects!!!

Hang in there and keep fighting!!!

hugs Steph