Tamoxifen Side Effects

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Madpark
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Date Joined Nov 2011
Total Posts : 3
   Posted 11/30/2011 7:57 AM (GMT -6)   
yeah  MMC you can do it ! You HAVE to do it.  I was really scared as well but ask your Doctor lots of questions and learn of the cancer that you have.  Sorry to hear that you don't have the support from some family members but I am sure you have "some" support, lean on them. Also, they have great support groups out there, free and normally held at the hospital or cancer center that you are going to, if not check your local churches.  Everyone is always frightened when they hear the "C" word.  But you can do it.  It wasn't as bad as it sounds.  The 6 weeks of radiation flew by and its already been a year, sure there are side effects, but isn't there always with any meds we take?  I will ***** everyday about the weight I have gained and the loss of energy BUT, I am also thankful and blessed that my chances or it returning  are lowered.  I can always lose the weight.....I will be thinking of you this friday, my prayers will be with you.
 
Bev, my headaches are getting better.  I have been taking sinus meds and they seems to be helping, I go for MRI tonight, cat scarn came back normal but they just want to make sure !! Who knew that it just might be a case of bad allergies....which i never had before!! I am going to talk to my primary doctor about switching up my Zoloft.....
 
Hang in there everyone !!
Tracey scool

barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 11/30/2011 7:15 PM (GMT -6)   
Tracey... Good to hear that the headaches are better and the ct scan came back normal. I guess we can develop allergies at any age. It seems that when we have breast cancer, every ache, pain, and lump or bump is suspect. I was having some vision problems once, and the first place they looked was at my brain, not my eyes! LOL

Hugs...
BEV
Bev
Breast Cancer forum moderator

Madpark
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Date Joined Nov 2011
Total Posts : 3
   Posted 12/1/2011 10:56 AM (GMT -6)   
Hi Bev...

Thats too funny but also so true ! And of course now my one knee is shot and we can blame it on the extra weight gain along with the bone density loss due to the Tamoxifen... Now I get to have some shots of Synvisc to help with the knee pain and lubercation. I need a knee replacement but I am too young so I am hoping that this helps !! Just taking things one day at a time !!!

Keeping fingers crossed for MMC tomorrow !!!

Hugs
T

barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 12/21/2011 7:42 PM (GMT -6)   
Hi, LYK. We all have screen names, yes, but we can use our real names if we choose to. "bev" happens to be my real name, and I sign all my posts that way. But you must remember, this is the internet, and subject to viewing by anyone and everyone. So too much personally indentifying information is never a good idea. I will tell you a lot of the women who have posted here have become very close friends over the years. We've had a number of "gatherings" with anywhere from 15 to 50+ women getting together at various places... St. Louis, Cincinnati, Myrtle Beach, Las Vegas, Louisville, and San Antonio... Real names or not, we're sisters at heart.

Hugs...
BEV
Bev
Breast Cancer forum moderator

svd
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Date Joined Jan 2012
Total Posts : 1
   Posted 1/25/2012 4:22 PM (GMT -6)   
I have been on Tamoxifen for about 2 1/2 months. about 6 weeks ago, I started feeling extremely anxious and depressed. Psychiatrist put me on Effexor, Seroquel, and Klonopin -- not much relief yet. I was told that you could try to split the 20mg dosage and take half in the a.m. and half in p.m. This hasn't seemed to help much either. Has anyone had these side effects? Has anyone taken their dosages in the a.m. and p.m. instead of all at once? Has anyone heard that it's ok to literally split the pill in half or should I ask for 10mg pills and take 2 per day? Thanks!

miss nan
New Member


Date Joined Dec 2011
Total Posts : 6
   Posted 1/26/2012 10:31 AM (GMT -6)   
Hi,
I am too on tamoxifen for about 3 months. I am passing a state of deep depression. My oncologis supressed my ovary too to block all hormones in my body as I am premenopausal. This caused me depression as I lost my period . The side effects of the medications caused some eyebrows loss and growing undesirable facial hair which was not present before.
Have you passed such side effects ( eyebrows loss, facial hair). Till now these are the only noticeable side effects together with depression.
I am thinking of consulting a psychiatrist but I am hesitated as I don't want more medications. Do you recommend visiting one or the depression may go away by time?
I have to be on tamoxifen for 5 years!! I think it is too long but he says it is a must. Have you the same case?

God be with us all
nan

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 1/31/2012 8:57 PM (GMT -6)   
5 years is pretty standard treatment for tamoxifen. As for the depression, is it really from the tamoxifen, or from dealing with the cancer diagnosis?

One of the benefits of some antidepressants... they can help relieve the hot flashes associated with menopause. When I started being able to sleep at night again, it was amazing how much better I felt. I tried several different antidepressants, but Effexor is what finally worked like a charm for me. Some women find that Paxil or Zoloft works well for them. So talk to your doctor about it. It certainly wouldn't hurt to give it a try.

Hugs...
BEV
Bev
Breast Cancer forum moderator

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 2/1/2012 6:21 PM (GMT -6)   
Thanks, Lauren, for that info. I have never taken tamoxifen, so I was not aware of that drug interaction. I was just thrown into menopause by chemotherapy, and the side effects are much the same. I think I mentioned in an earlier post in this thread that I haven't taken tamoxifen, but this has been a long-running thread. Anyway, thanks for sharing that info! I really appreciate it.

Hugs....
BEV
Bev
Breast Cancer forum moderator

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 2/8/2012 7:11 PM (GMT -6)   
Thanks for the link, Lauren. :)
BEV
Bev
Breast Cancer forum moderator

Hanapepe artist
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/17/2012 7:36 PM (GMT -6)   
I am new to your forum. I was so happy to find this and I have read all the post. It's good to know I am not alone. Feels like it a lot of the time. I had breast cancer stage 0, Never heard of such a thing? Had a the cancer removed last July and then 6 weeks of radiation. I have been on tamoxifen for about 5 months, my side effects have been night leg cramps, some weight gain, hot flashes.All of these not so bad. but latly the tierdness and upset stomach is getting me down. I don't have the get up and go like I used to. Trying to keep a positive attitude and know it is all worth it to stop the cancer from coming back , but hell what's a girl to do? 4 and a half more years of this...

miss nan
New Member


Date Joined Dec 2011
Total Posts : 6
   Posted 3/25/2012 9:56 AM (GMT -6)   
Hi Hanapepe,

I am too on tamoxifen... 5 months passed too since I started taking it. Oh, for me too, "the five year period" is a very long time. I started calculation since the first day, then I started to think that it is crazy!!
My side effects are different from yours; facial hair and eyebros falling with slow growth. What is your dosage of tamo.?
I think we will be tamoxifen takers friends as we have started at the same time. I don't have hot flashes which I passed during the chemo.
I am premenopausal but suppressing my ovary for at least 2 years as I am diagnosed with grade III ( some high risk during the 1rst 2 years)
u can share me the hard experience
Best wishes

CSF
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/3/2012 10:25 AM (GMT -6)   
Hi!! I've been on Tamoxifen for about 10 days now and was wondering at what point do you feel side effects.

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 4/3/2012 6:26 PM (GMT -6)   
No experience with tamoxifen, but I hope someone who does will answer your question.

:)
BEV
Bev
Breast Cancer forum moderator

Triathlon girl
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/6/2012 10:52 PM (GMT -6)   
 

Post Edited (Triathlon girl) : 4/7/2012 9:54:04 PM (GMT-6)


clanqc
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/25/2012 10:23 PM (GMT -6)   
I am on my 5th year of Tamoxifen.  Tried the other Aromatases, too many side effects.  Tamoxifen is cheap and works.  5 years cancer free, had left side mast in 07, chemo and rads.  You cannot take ZOLOFT with Tamoxifen, only one that you can take is EFFEXOR...for depression.  I also take clonidine for the heat; I am extra hot all of the time, much worse than menopause.  All other symptoms gone.  Talk to your oncologist and primary physician.  Both my psychiatrist (for the depression meds) and oncologist went to a seminar a few years ago and got me off zoloft.  I loved cymbalta...cant that yet.  I will be going off tamoxifen soon....hope I return to a normal temperature.  SJ

dmg9132002
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Date Joined Apr 2012
Total Posts : 2
   Posted 4/29/2012 12:57 AM (GMT -6)   
Clanqc - I had a left side mastectomy in 2009 and have been on Tamoxifen almost 3 years. Have always had some problem with hot flashes during those 3 years but recently they have become much worse. I have been on Effexor-XR (150 mg) the entire time. How long have you been taking the Clonidine and can you tell if it helps any? Have you had any side effects you can attribute to the Clonidine? Thanks for the info. Congrats on being so close to the 5 year mark. That's definitely a milestone!

clanqc
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/29/2012 3:01 PM (GMT -6)   
My oncologist says the start date of the *cancer free* concept starts when we are first diagnosed.  I was diagnosed 11/06, so I am going on 6 years cancer free.  No side effects from clonidine.  I am on 225 effexor....seeing my doc this week.  I am still having very severe hot steamy spells.  I think I can get off the tamoxifen in 2013.  Hope this helps.  SJ

dmg9132002
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/30/2012 10:01 AM (GMT -6)   
Clanqc - Thanks for the response. I think I'll ask my oncologist about trying the Clonidine. I'm not eager to take more meds but I have trouble just functioning with the hot spells. Best of Luck.

annmc
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/1/2012 7:36 PM (GMT -6)   
In April I was diagnosised with LCIS and had a lumpectomy in May. I was put on Tamoxifen as a result although the area around the lump was smooth which they said is a sign on no cancer. I took the Tamoxifen for three weeks and all the side effects of constipation, mild vaginal itch, tired, nausea and weight gain immediately..uuuhg! I usually weight 128 and I'm 40, any pound feels like a ton. I stopped taking the Tamoxifen because of the side effects and I was just honestlt MAD...madder than mad, don't know how to explain it. But I have made a choice to take the Tamoxifen. It has been suggested to change some of my diet and give my body time to adjust. I like the idea of gradually introducing my body to the Tamoxifen. I haven't seen an actual Oncologist and that has been suggested to so that is on my list this week. It's great to hear that I am not alone in this scary time. Thanks to everyone who is responding on here, it gives me encouragement!

sunriseNW
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/14/2012 1:50 PM (GMT -6)   
I had lump removed from left breast in May - no chemo needed and refused radiation due to possible damage to already weak bones from osteoporosis plus other concerns. So hope the tamoxifen I was just put on doesn't make the bones worse. Thanks everyone who mentioned slowly ramping up to the full dose. As for constipation I have a cheap solution. Take magnesium increasing the dose until you are loose. If you get more than you need then your body expels it (eliminating the constipation problem).

I was told that breast cancer has an emotional component and I need to release any repressed anger or resentment. (The breast = nurturing?) Now I'm trying to figure out how to express feelings instead of stuffing them.

Could the low energy be left over from the surgery or does it get worse after taking the tamoxifen?

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 7/17/2012 5:46 PM (GMT -6)   
Any type of cancer has an emotional component. Geez! People die of this disease, so how could one not be angry and resentful! Yes, there is the "whole breast=nurturing" thing. Personally, I was more worried about the possibility of losing my life than my breast. Some people do get very upset about losing a breast. They feel loss of femininity and womanliness. Personally, I can live without a breast just fine, thanks.

As for the tamoxifen, I can't speak to that. Never took it. Maybe someone with experience with it will be able to speak better to the side effects.

Sometimes low energy can be from depression, as well. And it you aren't dealing with your feelings about your diagnosis, then that could be part of the lack of energy.

Have you talked to your doctor about your low energy levels???

Hugs...
BEV
Bev
Breast Cancer forum moderator

madan
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/28/2012 8:46 PM (GMT -6)   
I took Tamoxifen for 3 months, and I am facing stopping it because of fear of uterine cancer and because I was irritable all the time. I did not have the hot flashes or the weight gain, in fact I had a lot of energy and saw a reduction on my typical belly bulge. But 5 weeks into taking the drug I started spotting and had an endometrial biopsy. I had uterine pain all the time. My OBGYN told me that tamoxifen can cause thickening of the lining of the uterus and in certain cases uterine cancer. She said that it was manageable if we did a biopsy every time I spotted, but that seemed to be the case the next month too. In addition to that, I felt extremely irritable, lost interest in my lovely husband and was upset at my children all the time. My energy level was great, though. My oncologist suggested to consider dropping it since I only had DCIS, which was removed with lumpectomy and treated with radiation, but I'm willing to give it a longer try to see if the side effects disappear. Any advise?

MN survivor
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/16/2012 10:02 PM (GMT -6)   
TAMOXIFIN...i have been taking it 1.5 months after 7 weeks radiation.  The side effects are life-changing, but there isn't an alternative!  I already went through menopause, and now I get to go through it again.  The anxiety and mood swings are horrible!  And, i am always nauseous.  I am going to a holostic medicine specialist.  I am opposed to MORE prescriptions to relieve symptoms.  That's how this all started in the first place... HRT after hysterectomy for 8 years, then stopped...then within 3-5 years, breast cancer.  apparently this is pretty text book.
 
NEXT:  has anyone had good experience with holistic medicine or natural herbal remedies!  I am feeling desperate (yes, part of a tamoxifin symptom!!)... in MN.

sam10
New Member


Date Joined Aug 2012
Total Posts : 13
   Posted 9/10/2012 6:49 PM (GMT -6)   
     
 
        I'm seeing my oncologist this wed. and will talk to him about gradually building up the tamoxifen. I stopped aug 3rd. I feel so much better but know I need the tamoxifen to keep the recurrance at bay. The side effects for me were debilitating, severe chest(bone)pain and hip pain.I was taking vicadin plus two advil every two hours for the pain and it didn't quite do the job. I can manage the pain now with advil. I had nausea at first, but it went away, eyebrows have not come back from chemo, Istill get sharp pains in my legs. I am older,70. my heart goes out to all of you especially the young with children. At least my family are now adults, some of them are downright old!!:)
 
thanks to all who write on this forum and God bless all of you
 
sam10

GChica
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/4/2012 3:22 PM (GMT -6)   
I am excited that I found this blog. I read all the comments and stories and I can see that we are facing this challenge but not alone. I have been taking tamoxifen for the past 4 years. I have experienced many of the side effects (weight gain, hair thinning, leg/foot cramps, mood swing, hot flashes, water retention, coughing, etc). I have done everything not to let these symptoms to discourage me. I feel that as long my doctor and the mammography confirm that I am cancer free, I will take these symptoms any day. However, for the past few months, I began to experience some blood spotting. The Obgyn did a biopsy but thank god it was negative. But the past three weeks, I have been spotting more. Does that mean that I need to have another biopsy to make sure all is okay? I want to be positive but once I see blood it does not give me a good feeling? I started taking tamoxifen after found some atypical cells which were removed on both breast. Any thoughts will be greatly appreciated. GChica
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