Tamoxifen, fatigue and emotional side effects

HI everyone, 

I am so tired , I have now been on Tamoxifen for nearly 3months, I felt great up until a month ago. So very tired, short fused, bit hypo, mind muddle.Does anyone get a very sore throat, 5 weeks now and a course of antibiotics but still very sore. Dry , sore eyes too, got drops for that. My face has changed a bit , lost abit of female pretty if you know what I mean.I am going to do my best to stay on it thou as I would never forgive myself if I stopped it and found I had cancer in 2 -5 years.

Does anyone get hot toes at night , bit puffy .. funny,,

Well wish me luck , they are scanning my good boob , on Tuesday,, wee lump,,, grrrr better be abit of ole grissle...

Wow, I am experiencing severe fatigue also - started tamoxifen almost 2 years ago.  It hit me with a ton of bricks just this month.  I could sleep most of the day.  My hot flushes have increased too  I take Effexor and Neurontin and a small dose of Amatryptaline at night to help me sleep soundly.  If I have sugar or caffeine to try to wake myself up my hot flushes only get worse.

Sometimes it seems to me that my doctor is just "humoring me".  Last time I went he said the only course of action left for me was valium.  Valium?  Is he kidding?  What the hell do I need that for?  I'll be sleepier and more depressed.  UGGGHHH.

Ok.  Usually I'm much more positive but I am struggling and need to vent.  I think its the tamoxifen but I don't dare stop it cuz my estrogen level was huge before I was diagnosed.

Thanks for listening.  And keep the "vents" coming.  It really helps to know that there are others out there suffering with similar symptoms.

I started Tamoxifen in March of 2012. I was on the AL's for 3 months before that and could not tolerate either of them. I could barely walk. I am very fatigued, I have to push myself to get things done. I sleep ok. I was on cymbalta for a while I felt good on it, no muscle pain or joint pain, but after several months it made me so sick to my stomach that I had to stop it. I have been taking effexor, and am getting off of it, I have 2 more pills to take over the next 6 days. Some days I have debilitating hot flashes and other days I freeze to death.

Any ONC who does not believe in these SE needs to take it themselves.

Glad I found this site.

I stopped taking tamoxifen almost two weeks ago and I've regained a lot of my "old" energy. Feeling so much more motivated and I can walk around more easily without pain.

I may go back on it. I'm still enjoying how good I feel. Still have hot flushes but not as severe.

Thanks Bluepearl for your advice. I think you are wise and you bring up some good points. I'm sorry to hear you had a second primary. I don't want that to happen to me. I do think I will probably go back on the tamoxifen in the next few weeks.

I've struggled with all my meds. I've gone back and forth with doses and trying different meds. At one time I was taking 1200mg of gabapentin a day and 50mg of amitriptaline. I thought I had a brain tumour my head felt so disconnected. I now take 900mg of gabapentin and 20mg of amitriptaline at night (to help me sleep). I couldn't take citalopram - it just made me extremely anxious. I used to take Cymbalta and loved it but I can't take it with Tamoxifen. I've upped the Effexor to 300mg and I feel really good now.

I am still having hot flushes and I agree that these are a part of ageing and the menopause. I'm 52 and I can accept some hot flushing. The flushing I was experiencing on the tamoxifen was really getting me down as I was sweating so much and struggling coping with teaching while feeling so hot and sweaty. Perhaps when I go back on the tamoxifen my side effects will be lessened. I've heard on another thread on this forum that that may happen.

I will never take valium again. I took it infrequently prior to being diagnosed with breast cancer but that was when I was suffering with severe panic attacks - probably as a result of the huge amount of estrogen in my body (over 17 times the normal range).

Exercise helps for sure. I stretch every day and do Pilates. Also lots of gardening. I could do more and I'm trying now to get a walk in every day. "Just do it" rings a bell - I'm trying

Hi rhymeblue, and good luck to you with your decision.

I'm still off the tamoxifen and have started a diet with almost no red meat, lots of organic veg and much less sugar (trying to go off completely).

I'm not as tired and I'm walking much better with less joint pain.

Best of all, I have an interest in sex again and I'm starting to take off the 20lbs I've gained.

Hi,

I am coming back to these boards after almost a year.  I lost my best friend to colon cancer less than 3 months after diagnosis and I could not face reading about cancer for a long time.  I'm back on these boards so I can offer support.

I stopped taking tamoxifen for almost 3 months.  My GP and oncologist and Macmillan nurse told me I would almost surely relapse if I didn't go back on it.  It took me a long time to see how valuable my life was.  I then went back on the tamoxifen and I haven't regretted it.  Most of the side effects are gone.  I have terrible hot flashes but after over 3 years of tamoxifen they are lessening.

I am living an amazing life.  Doing all the things I've always wanted to do.  My latest enjoyment is crotchet which I do as my relaxation and "meditation" time.

Be well.

Well, I'm taking another break from tamoxifen because I've been having severe anxiety. We don't know what the cause is but we thought it was too much Effexor because I was taking 450mg at one point. I am now down to 150mg a day with bad side effects but I knew this would happen. I didn't want to take the tamoxifen as well and be having hot flashes along with the weirdness of coming off Effexor. I will probably go back on it.

I went back on tamoxifen in January 2014 and my hot flushes were better than they were prior to stopping. However, I have gained a lot of weight (20 lbs) and suffered severe anxiety even developing a breathing tic (nothing I've had before). So, I stopped back at the end of October this year 2014, or thereabouts. It will take me another couple of months to wean off the Effexor. Then, I will try the tamoxifen again (probably).

Hi Jennie93,

I hear what you are saying cuz I've suffered with depression most of my life. I had some terrible childhood traumas and it took me a long time to learn to be positive and to live my life with joy and positivity. The best thing that's happened to me after recovering from surgery and chemo is that my depression has hugely improved. I'm weaning myself (with doctor's help) off of my anti depressants and anti anxiety meds because I am so full of love of life and so focused on getting the most out of life that I can. One of the joys that came out of suffering through BC is that I now make good choices for myself and I'm living my dream life.

I do think there is a light at the end of the tunnel - the tunnel in my view, being the journey after cancer diagnosis and treatment - the light is the joy we find in everyday things and living with love. I do hope you will get there - I think you will. Don't give up In the meantime, we all have bad days - me too - but I keep on going to bed at the end of the day saying "thank you" to myself and in the morning when I wake up it's a bonus and I try to spend more time in joy than in sadness (or sickness or whatever one may call it).

Me, I go on and off tamoxifen but I want to live so I keep coming back to it. I'm just not going to agonise about it anymore.

There are lots of women who do more than me and probably some that do less but I don't care, I just have to be true to myself. I bitched all day today because I've been ill for the past 3 weeks with flu and pneumonia. But I'm over my moaning and tomorrow will be another day.

Yes, yes, yes, it has taken me a long time to connect the emotional impact, I am on 450mg of effexor and 20mg of tamoxifen.  I ended up so depressed and anxious I was admitted to the psych unit for 32 days.  My frustration is that I have been unable to locate any scientific studies or reports relating the side effects of the drug Tamoxifen with creating emotional distress in some or a lot of patients.

If someone is aware of any studies/reports please please post.  It can't be all in our minds!

I've always been very energetic and busy. I started Tamoxifen 15 months ago. At the beginning, the hot flashes got worse, but that was really the only side effect I had. Over the last 3 months or so, I've noticed extreme fatigue/exhaustion and foggy brain to the point where it's hard to function normally. I'm on Lexapro but that doesn't seem to help too much. I am seriously thinking about taking a 30 day break from Tamoxifen just to see if I feel better. Of course, if I do, that will just encourage me not to start taking it again. I just cannot go on like this though ... I think it's time for a break.