Tamoxifen fog and concentration/fatigue issues
Hi All,
Frequent browser, first time poster here! Brief history: breast cancer diagnosed 5/2011 at 29 years old, bi-lateral mastectomy, reconstruction, 6 rounds of TAC chemo, and tamoxifen started in 3/2012, now 32 years old. I took a few moths off from taking tamoxifen recently because I had started a new job and the brain fog/lack of concentration, fatigue was killing me! I had read about the benefits of taking an iodine supplement and though why not? So I stopped taking the tamoxifen, started to feel clearer and more energetic almost immediately and started taking an iodine supplement. Turns out the iodine was actually suppressing my thyroid function, making matters worse, so my primary doc told me to stop taking it.
A few months later I met with a new oncologist to establish care (other one was too far away) and she convinced me to start taking tamoxifen again though a tough love pep talk ("I can't tell you what to do, but I can tell you that taking the tamoxifen won't give you cancer again - although zero recurrence isn't guaranteed-, however not taking it might.", something like that). So it has been a couple of months now back on tamoxifen and I am supplementing with Concerta to help with focus/concentration issues, but it's not really helping now that I have been on it for a minute. I had some focus/concentrations issues before cancer and chemo, but now it is out of control!
My energy levels have felt pretty good, I've been supplementing with ginseng, but I need to get this somewhat newly found ADD under control. Any supplements or meds that have helped others in the same or similar situation? Sorry I know this is no where near a 'new topic', but there is so much to navigate through! Any advice is much appreciated!
Thanks!
Comments
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I've found that the lack of sleep d/t hotflashes really affects my concentration. I feel out of it. Not sure if u sleep well. If not get some sleeping pills. I take adderall occ to help but I don't have add. I take it purely to wake up & focus. I'm just almost falling asleep during the day. Honestly I feel wired AND tired w/ the stimulant and lack of sleep... So not really a help. If I take sleeping pills & have a GOOD night sleep (which doesn't happen a lot) I feel sooooo much better. Prob not a help but thought I'd give you my experience.
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Hi Amoc1973,
Thanks for your reply. I am asking my onc to try an increased dosage of the Concerta to see if that helps, but who knows if the answer lies in meds or changing up something else I am doing (diet, exercise, etc.)?
Have you tried taking black cohosh to help with the hot flashes. I took it during chemo and while it did not eliminate them it did lessen the severity. It's herbal and usually in the 'women's health' area of supplement sections. I also took Ambien during chemo to help me sleep through the night. After chemo I was on Effexor (mild anti-depressant) for a little bit and that actually knocked them out completely.
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Boogie and Amoc, this is a great new thread. I started with Tamox on 12/25 and stopped it for one week as per my MO instructions, because of how tired and fatigued o felt. Stopping it for a week actually helped, but now i am tired again. I am not taking any sleeping pills or Effexor, etc.
I am only taking multi vitamins (gummy bears) and Vitamin D (the chewable one with no soy content).
I am trying a green juice in the am, in a NutriBullet not a juicer with kale, celery, ginger, cucumber and a fruit. I actually think that has helped.
Can you tell me if the Effexor helped and in what way? I will see my MO for my three month after chemo check up this Wednesday and i have a number of questions for him: fatigue, dizziness, if I can take vitamin B and anything for the fatigue, whatever it is.
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Headeast....it could very well be depression. So hard to know. But I'm feeling very very tired and see my onc in 2 weeks. I'm gonna ask to check my thyroid & b12 levels as well as whatever else she wants. If all your lab work looks good then maybe depression is the answer. My onc says tamox doesn't cause fatigue. Yeah right
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amoc, i went to see my MO on Wednesday. Blood work was good. MO told me that even though I am menopausal now (I am 45 and had chemo induced menopause) I might get my period back in the next months, that it can take six months or even more.
He also told me that the fatigue I feel is very common, part of it is the chemo and the other part is that now that I have low levels of estrogen my serotonin is low. He prescribed Effexor at first but then changed to a milder one called Celexa, 20mg to help with increasing the serotonin in my brain and with that the fatigue and other SE can be controlled.
Tonight has been my second night taking Celexa and it is making me sleepy and a little nauseous, which MO told me I would be, so I took anti nausea at the same time as the anti depressant. He told me I should take half the dose for a week and a half to two weeks and that the nausea should disappear in four days. He also told me that it takes a whole month for that medication to take effect, since the serotonin levels increase gradually.
I have tried to explain as much as i can about my conversation with my MO and I hope it helps to this thread.
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My onc said I may feel better once my period returns too. It's been 7 mo so we'll see. I'm also on an AD that's making me a bit nauseous. But it's only been 2 weeks so hopefully I'll start feeling better soon & I hope u do too. Let us know
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Nauseous after two weeks? Are you taking any anti nausea meds?
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Hey y'all...I just stopped taking tamox after two years because of a change in my liver enzymes, but I do think it causes fatigue and definitely causes brain fog!!
Fatigue can be a symptom of depression and I took Effexor for almost two years b/c of depression during/after radiation. It's rough getting on it b/c of the nausea. You can get your doc to write you a prescription for nausea meds if you don't have any which will help you get over the hump. I think the worst of the nausea was over in a couple weeks though.
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Grumpycat, did the Effexor help you with the fatigue? I was taking Celexa for about two weeks and felt so tired and sleepy that I had to stop taking it. I didnt feel anything better as far as fatigue, i actually felt worse!
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I have been on tamoxifen since November 2011. I take fish oil and New Chapter Coenzyme B Food Complex 180 tablets for brain fog. I'm not a rep and don't make any $. I noticed myself getting really tired when I ran out of the B Food complex so just re-ordered. Seems to really help!
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I find Effexor did help fatigue and mood, not sleep though. I have been on taxoxifen since 2013 , off it the last two weeks as im having major surgery so have to stop it until after surgery and im moving around again. I would be careful with the complimentary items you are trying some of them can effect tamoxifen and some can effect estrogen levels. I honest thought the brain fog, concentration issues were tamoxifen also until now because i dont see any difference being off it for two weeks now. I think its menopause (chemo induced) more than tamoxifen at least for me anyways
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Hi boogie,
I took Tamox for almost 2 years before I was forced off of it due to over 20 ovarian cysts. Other than that, I would have stayed on it because I wanted the bone loss prevention it provided. However, I did have brain fog. I had side effects on it, but I knew I was going to have side effects if I had my ovaries removed too but I will say I don't have nearly as bad as brain fog as I did on it. One time I was at the gas station, used my credit card and to this day, I don't know what happened to it after that. I physically cannot remember what I did and I always put it immediately back in my wallet like a robot. So weird. I don't know what to tell you to help you make it better but wanted to give you hope that you are not losing your brain like I thought I was, that it could be the drug.
Anna
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I have been unsure of Tamoxifen and its effect on bone. Does it actually prevent bone loss?
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Rdrunner - curious why do you have to stop for surgery? Did you have to stop for your Mx?
OMG - started Tamoxifen 12 days ago and was SO tired this afternoon after getting the kids. Was sitting on the couch talking to my 11 year old dd and put my head on the cushion and nearly fell asleep. Just came up to help her twin, and the stairs were like chemo #5, so long, I had to take a break. I'm having trouble falling asleep and if I raise my head and look up am more dizzy than I used to be. I just figured this is because since I started it, I seem to take forever to fall asleep. I'm still on Herceptin, so I'll ask my Onc on the 1st, when I see him.
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Started Tamoxifen and am super nervous about the side effects
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Hi new direction,
I was told by both my gyno and onco that Tamoxifen helps with bone density when I was diagnosed almost 5 years ago so that is why I made my choice to take it. Interestingly though when I google bone density and Tamox now, I see there are studies that say it can cause bone loss in premenopausal women so I am not sure what doctors think of it now.
Anna
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I have been on tamoxifen for almost two years, and other than my joints hurting, which taking some vitamins and increasing my exercise has helped. I haven't slept well since I finished chemo, but I won't take anything as I have children and a husband who is deployed too much so I have to be able to respond. I know that there are side effects that can come with tamoxifen, but so far I have been very fortunate. I really think this is much like everything else is life, try and be as positive as you can about everything, and know this is something that is supposed to help you not get this terrible disease again. Stay active, drink plenty of water, and stay grateful you have a choice to make still. -
I started tamo Oct 2014 and had (have) a few side effects such as hot flashes, night sweats, not able to sleep, constipation and brain fog. I was put on Effexor for the hot flashes and Linzess for the constipation. I take the Effexor in the morning which has helped manage the hot flashes and night sweats to about 85%. I take the tamo and Linzess at night and so far, I sleep really well. I started back to walking and running (approx 35 miles per week if not more) and that seems to have helped alot. The Linzess and a morning helping of prunes has helped with the constipation. With all that being said, I still feel like I have a concentration issue but I figure it could be worse.
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I wanted to mention that my MO told me that Effexor (Venlafaxine), similar andi-depressants, and MANY other drugs are contraindicated with Tamoxifen. She actually gave me a list and showed me where Effexor is on this list. It is sometimes linked to heart issues. In addition, I believe that Effexor can inhibit the effectiveness of Tamoxifen. If your oncologists don't know about this, please ask them to look it up. Here are several links.
http://www.drugs.com/drug-interactions/tamoxifen.html (357 drugs that have interactions with Tamoxifen.
http://www.cancer.gov/cancertopics/types/breast/br... (see bullet point # 3)
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Here's my story: I was on tamoxifen for three months. I could take the constipation, the hot flashes, the achiness, the nausea and almost constant hunger. I've gained weight. I can handle all these things and find ways to solve them. But I cannot tolerate the brain fog. I found myself unable to concentrate, think, remember, write.... These are important activities for me. I am actually a college professor. I cannot function with my brain on the fritz. This is not just my livelihood but my passion. I love my job. So. In about 45 minutes I am on my way to see my MO to tell her I stopped taking tamox three weeks ago. Yesterday I was able to accomplish in one day what it had been taking me days on end to get through. I have done some research and it seems that (at least some) AIs are less damaging to verbal memory and fluency, and executive function. I am hoping that, since I am 51 and have not had a period since last June (seriously, can't I be considered post menopausal?) she'll switch to me to an AI. I do not want to feel better ABOUT these issues. I want to BE better. The last few days I have felt back to my old self (at least pretty close).... Okay, wish me luck!
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Good luck Professor! So happy for you that you have a passion in life that you can do!
Anna
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My Tamoxifen confession is that I will take mini-breaks because of this fog and concentration problem. In addition to that, I also have ear ringing that makes me crazy. As soon as I stop the Tamoxifen the ear ringing goes away. I also have not had a period since FEB 2013....does this not mean I am menopausal?
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Okay so that did not go as I had hoped! My MO, who I have always liked, did not respond well. I had told the nurse and the nurse was like, "Oh well I am sure she's going to be able to find you something else to take. You have options." But when I told the doctor my situation and said, "Is there something else I can take?" She said "NO. The only thing we could do is take your ovaries out." ??? Now, I am not averse to having my ovaries out but what?! I was stunned. I said what about an AI? and she was all, that's only for postmenopausal women. And I was like what about the SOFT and TEXT trials? And she looked at me like I was speaking some other language. Then she said that this fog is generally NOT a side effect of tamoxifen and it is probably just menopause causing it. I said, "First, I am feeling fine now and I am off the tamoxifen and second, I have two studies right here that show that cognitive capacities, especially verbal memory, verbal fluency, and executive function ARE lower in women taking tamoxifen compared to healthy controls and women who have gone through surgery and radiation. How can that not be recognized as a side effect?" Plus, hello? If it IS menopause then why not switch me to an AI??? OMG. It was not at all what I have come to expect from my doctors. Finally, I persuaded her to at least test my estradiol levels. I will be hearing about that later today or tomorrow. So stunned. I asked her, "Is this one of those moments when a person needs a second opinion?" And she said, " You are ALWAYS welcome to get a second opinion" but not in a nice way. She wouldn't stop trying to convince me to stay on it. I told her finally, this is my life and my livelihood. I can take a lot of side effects. I am willing to power through a lot of things. I am NOT "all about quality of life" --I am all about quantity! BUT. This is not a tolerable thing. She was not happy with me and ultimately left the exam room barely saying good bye. So so so weird.
Also: here's the thing. Apparently, you are considered postmenopausal if you have not had a period in 12 months UNLESS you have been taking something (such as tamoxifen) that might be interfering with your cycle. So. Even though I have not had a period since June (and did not start taking tamoxifen until December) I am still (in her eyes) premenopausal.
so. Not a swell morning. but I am actually feeling pretty good....
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I'm glad you stood up to her!! She sounds a little like my MO, I like her and have had a good relationship with her...but when I first mentioned issues with Tamoxifen she told me straight up that she has NEVER had a patient not complete the 5 years on it. This made it clear to me that she was not open to alternatives and it shut me down...I didn't like it.
My experience with my MO has been that she doesn't do well with SE talk. I've seen other women post about this issue with their MO as well. I think MO's try to down play se's a lot of the time.
anyway, I just want to say you did good and keep up the good fight.
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Thanks so much for the support tangandchris! It was weird and I don't like feeling like I am arguing with this woman. You know, I walked out a little shaky. But now I feel like at least I am on the road to an alternative. I mean, I could have gone off the tamoxifen and just not mentioned it at all......
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Profossor50 - I hear you.
My MO told me brain fog could not be caused by Tamoxifen. I changed MO's.
The new one said that although it is a rare side effect (really? - seems like a LOT of us experience it) it might be from the Tamoxifen and as I am considered premenopausal she could change me to monthly injections to stop my ovaries working (no talk of having them removed) and an AI.
I wanted to add that some of my hormone levels have been checked a few times over the past three months and they fluctuate - indicating different things - not definitively menopausal or premenopausal.
I hope that you will seek a second opinion and please keep us updated about what you decide to do - it is of great interest to many of us.
There is a wonderful thread of ladies who happily take their medication and laugh at their "forgetfulness". Reading their thread helped me feel less depressed about my cognitive issues but it hasn't helped me cope at work!
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Wow, Professor, I think we must have the same MO!
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Bounce - that cartoon made me laugh - I do that all the time!!
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Bounce, I LOVE that! LOL!
Okay, so here' s my update. I was sitting in a presentation yesterday afternoon and my phone rang a number I did not recognize. I stepped out to answer it and lo and behold it was my MO! I couldn't believe it. Anyway, she said she got the blood work back earlier than usual and that I am not technically menopausal. Of the three indicators, one was low enough, one was borderline, but my estradiol was still (somewhat far) above the menopause line. So. Then, she said she had already called in the prescription for an AI (not exactly sure which one) and her office would call to set up the first shot (the one that will knock out my ovaries each month)! Apparently she's come around. Yes, i am going "SOFT".
We will see how it goes. If I find that whatever AI she's put me on is not to my liking, she'll hear from me about that, emboldened by my experience as a rebel.
I have to add though that she continues to get on my nerves. She said something like, "I still don't know how I will explain to your insurance company that you failed tamoxifen." I wanted to scream. Throughout my cancer experience, she's the only medical professional I have interacted with who makes me feel like I have cancer. I had thought that was just part of her job, somewhat unique to being an MO, as opposed to BS or RO. But now I am not so sure.
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Professor - your MO is an idiot. You did NOT Fail Tamoxifen. Tamoxifen failed you! Ugh! Some of these doctors really have no clue what we go through - do they not listen to us at all or read the studies showing the percentages of women that do not complete these drugs? Sigh. So frustrating.
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