Bottle o Tamoxifen
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The bad thing is some of Tamoxifen's side effects are the same as symptoms of menopause so you don't know which is really the culprit! Almost every one of my issues could be the Tamoxifen or menopause (or perimenopause before my hysterectomy!). When I complain, my docs just shrug and say "Welcome to menopause." Why don't they every say "That damn Tamoxifen!"
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I have the mental fogginess or forgetfullness. My MO understood immediately when I told her about it. I was surprised since so many on the boards indicate MOs seem to have never heard of this side effect. She even indicated that with these drugs it is an individual thing on what side effects, the severity and when they show up and that the team at the center watches each of us individual. I like that they watch us, not sure I like that they are just not sure which SEs we are going to get (just like chemo).
Beth, I had the dizziness with Tamoxifen after a few weeks of starting it. The dizziness during the day lasted about a week or so then went away. The night dizziness slowly subsided. Hope this helps.
edited to try and correct grammar -- guess that is the brain fogginess. Like the carton as that is exactly how I feel sometime.
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Good to hear your MO so on the ball
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Jwoo - I just have almost no short term memory. If someone asks me about something at work, I have to look up what I did just 3 days ago to give them an answer.
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Hi There, So been on Tamoxifen for 3 months now.. My SE are unable to lose weight - counting calories and getting my steps in doesn't help, headaches, mental fog, skipped period, feeling tired, loss of intimacy and I noticed on both of my big toe nails, they are starting to turn black. Anyone else have the nail thing? I don't know about ya'll but how do you stay on this stuff with so many SE. I get it Tamoxifen is a a possible prevention of cancer but dang I am only 39 who wants to live like this?
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Hi Cindy. I had the toenails - big toe with me too. I was on chemo before starting tamoxifen, and it had been a potential SE of chemo so I can't be sure whether it was the chemo, tamox or the combo! The good news is the nails do recover. Maybe not quite to their health and beauty of before, the two affected nails look like "old lady" toenails now, sort of thick and horny, but they are definitely a normal colour again. I was 45 when I started tamox, will be 3 years this August. I think I posted earlier that I was 3 years on when the mental fog happened - actually blame my inability to do the correct calculation on the mental fogginess! I was 2 1/2 years on when it struck.
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CindyK - ditto, except for the inability to lose weight and nail problems. I have managed to lose 14 pounds since beginning of December (most of which I put on during chemo). Both my big toenails and both my ring finger nails lifted during chemo. They are almost back to normal now. No desire for sex but I'm faking it these days.....hee, hee. I have very mild headaches off/on throughout the day. Mental fog is turning me into a blithering idiot. I have no short term memory.0 -
Blownaway and feelingfeline - I didn't have chemo so I am not sure what is causing the nails to turn black. My mother was diagnosed with BC 2 years before me, she opted for lumpectomy and radiation - she also had the black nails but her's were on her hands. Before I started Tamoxifen I told my Onc about my mothers nails and she said she had never heard of it. so strange to me... Anyway regarding the brain fog, has anyone tried to get on some sort of medication to help with focus. If I can't focus, I can't recall and if I can't recall I end up daydreaming.. YIKES!!!
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Hi,
Count me among those who have lost recall and short term memory on Tamoxifen. It started about 2 months after I began taking Tamoxifen. My oncologist was concerned so she had me stop Tam. to see if there was any improvement. It's been about 1.5 months since stopping and I haven't noticed any improvement, but I'm feeling very uneasy about not taking it. Met with my onc. today and she is sending me to a neurological oncologist in her practice so that she can do a baseline cognitive function test with me. Then I'll go back on Tam. and we'll do the cognitive test at 3 mos. and 6 mos to see where things stand. I'm willing to sacrifice some cognitive function to lower my risk of recurrence, but it's just scary to think how severe it might become.
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Ditto on the brain fog and memory issues. I just smh at myself sometimes. Yesterday I went to the break room and heated up coffee and I didn't remember until this morning that I never went back to the microwave to pick-up my coffee. Glad someone did and seems like they tossed it as only my empty cup was on the counter..LoL. I had to tell my husband last week to have patience with me as he got somewhat irritated one day when I ask him the same question 3 times in the space of 10 mins according to him. According to me I only asked once..LoL. While I am working I actually now write down what I am doing so that if I am interrupted I remember. I also have a task list so that I stay focused. I use to be such a good multitasker and at one time was told I had almost photographic memory. Well not anymore . Darn Tamoxifen...But like fralaliso so far I am willing to put up with the SEs in order to reduce my chances of reoccurance especially since my original DX was stage 3.
No issues with nails turning black. Mine are on the mend from Chemo.
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Hi LadyB ditto on the "I used to be such a good multitasker and was at one time was told I had almost photographic memory" - in a way i think that's what helps us to realise there has been a change in our cognitive function. We all know people who are just naturally wired a bit dizzy, but having the contrast makes it really obvious that something has happened.
I am waiting to see my MO on July 27th, seems a long way away right now (hopefully I'll remember to go to the appointment
- joke)I too find writing everything down helpful, essential even. The irony was i used to do all that when i had a super memory, I would do it "just in case" even though i knew all the stuff on the list. Now it's my lifeline and my prop!
need all the help I can get!
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LadyB - If only I could put up with ALL the side effects... There are plenty (black nails, weight gain, hair loss, feeling tired, etc) that I can deal with on a daily basis even the brain fog ----- after work. However Monday thru Friday at work I need to be on top of my game and have the ability to think quickly. I sent a message to my Onc to see what we can do about the brain fog. Fingers crossed there is a solution without coming off the Tamoxifen.
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Feelingfeline--I've been following your cute posts and am in the same boat as you are--short term memory loss/brain fog that began after 3 years of Tamoxifen. I'm older though--56--so I've been worried about the SE actually being early signs of Alzheimers. After doing some research on line, reading your posts and others, I'm hoping it's an SE that won't progress much worse. I can only hope! I seem to think better when I've eaten protein and stayed hydrated. Just a thought.
Anyway, I'm wondering if anyone here is about to start an AI. My onc is sure I'm finally in menopause now and wrote an RX for Letrozole (Femara). She thinks I should start it now (was on Tam. 4 years in April) and will keep me on it for 6 years or more, depending on the latest studies. I'm really, really scared to start this drug!!! I'm a busy piano teacher and am sitting a lot and needing the use of my hands and fingers. I've heard about the terrible joint pain, worse vag. dryness (as if it could be worse--ha!), wieght gain and hair loss. I already have the spare tire from Tamoxifen (I think it exacerbates my carb craving) and don't want to add another tire
I'm normally a pretty positive person, but I'm felling like a big Eeyore about this and need to make up my mind. thanks for any input! Best to all!
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Hi Ladies - glad to hear that I'm not the only one with brain fog. I used to multi-task with the best, now I feel like I've left my brain somewhere. My 90 year old father is sharper than me, he reminds me of things I've forgotten to do. I had the weight gain, I'm on a really strict diet now and seems to be helping, cut out sugar, caffiene, alcohol, red meat, dairy and grains. Tired most of the time, I spend a good part of the weekend trying to catch up on sleep. 1 year on tamox, 4 to go.
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Joanne, I had my ovaries out in March and my MO had wanted to put me on an AI also. I had a bone density in preparation which is fine but like you I am scared to be switched so I asked him if I could stay on Tamoxifen. He told me there is a benefit to going on the AI before I am on Tamoxifen for 2 years which will be in August this year. He did say I could stay on Tamoxifen and would discuss it with me the next time I saw him which will be this coming Friday. I have brain fog and hot flashes but am scared that AI's side effects will be worse. UFFF..
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SweetThing--I admire you for giving up all the things I'm addicted to--gluten, sugar, dairy, etc. I hear that an anti-inflammatory diet really helps joint pain and is better for your body, in general. I may get to the point of trying it, but I'm fighting it right now. Brain fog is the pits, but like everyone says, it's better than recurrence.
ndgrrl--let us know how your appt. goes, discussing the switch to an AI. Looks like I'll be filling the RX this week for Letrozole. i just made up my mind that I need to give it a try. I still have my trusty "bottle 'o Tamoxifen" that I'll happily go back to if I just can't handle the big, bad AI
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ndgrrl---I, too, am interested to see what your doc says. I had TLH/BSO back in Jan. At my last MO appt last Sept, when I was first looking at a hysterectomy, I asked him if I'd have to swap once I was in menopause. He told me that we'd discuss it "down the road". He said he was ok with me staying on Tamoxifen for 5 years regardless and then swap to an AI at that point. He feels that if a patient is tolerating Tamoxifen well and doesn't have all the markers for switching ( I guess like higher grade or stage or strongly ER/PR), he's ok with staying on Tamoxifen. I do have side effects but they are very manageable so I'd like to keep on keeping on!! At my last appt with my BS, I asked his opinion on switching once you're menopausal and he said he doesn't think it's that important. He said "you are doing really well on Tamoxifen and I can assure you, the AI side effects will be worse!" He thinks the increased effect of AIs don't always balance out quality of life. My plan at this point is to just stay on Tamoxifen till someone tells me I really really need to swap! I'd like to hear your doc's thoughts though too.
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I've been on Tamoxifen for nearly two months now and I feel almost fabulous!. Compared to Femara/Letrazole and the Zoladex injections which made me feel 90 years old. Just thought I would put something positive in here about Tamoxifen, although it is early days but honestly compared to the AI (which is supposedly better for my type of cancer) but just not worth the horrible side effects, for me anyway.
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When I finished chemo, I started tamoxifen and was fine. I had a hysterectomy and my onco switched me to aromasin. That was the beginning of 7 months of hell. The bone pain was debilitating. I could barely walk. Finally, I told my onco that I couldn't take it anymore. He agreed that my quality of life is way more important. He gave me a one month break and put me back on tamoxifen. I saw him today and he couldn't stop telling me how great I look. I am back to working out, two classes a day....yay!!! I added ww to the mix so I'm counting my points. I've lost 5 pds. Hubby and I started a no meat for a month diet. Only fish/seafood. My onco reminded me that it is hard to lose weight while on tamoxifen but to keep doing what I'm doing. For the ladies considering a switch, if tamoxifen is working for you, don't switch. If it ain't broke don't fix it! Of course with guidance from your oncologist! For me, aromasin wasn't worth it
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Hi,
I started tamoxifen on Saturday night. First day was fine. Last night I took the second pill and woke up at 330 am with weird pain on right side of ribs. It had been the kind of pain that when you take a breath it really hurts.
Could this be a tamoxifen reaction already? I had my bmx with tissue expanders on May 21st.
I had a bunch of stuff to do today, but couldn't do it. Took a Valium and went back to bed. Feeling hasn't stopped, but it has gotten better with the Valium.
I have appt tomorrow morning with my ps for my second fill. Will talk to him about it, but don't know if this is a tamoxifen hing or a surgery thing.
Thanks for any thoughts you have,
Mary
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Mary you should phone your Health Care Provider. If you are having difficulty breathing I wouldn't hesitate, just in case. Good luck to you.
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I agree that Mary should call her health care provider. That just doesn't sound good.
For the other gals who are on Tamoxifen but could also be put on AI can I ask what your ER PR percentages are? I am 100 percent so my MO told me these meds should work great for me. Does anyone know what exactly the diff are in Tam compared to the AI? How do they work differently and why is one prescribed more for post menopause and premenopausal? My MO is leaving this month so I snuck in one last appointment with him early so I could talk to him again about this. He is quite an elderly Dr and I really do like him as he tells it as it is. He told me no one really knows what these meds all do as each person is so different in what it will do and won't do. I am just totally scared to think about having joint pain the way I hear AI will do. My sister who was dx two months after me is 15 1/2 yrs older than me is on an AI and she is having to have shots every 3 months as they say she has bones of a 90 yr old lady at age 61 and the AI is not helping her at all. Fosedex (?) was not working for her, and she can not go on Tamoxifen as she had a slight stroke a few yrs back and Tam can cause blood clots. UFFFF!!
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Hi all, glad to hear some people are doing fine on tamox, as an earlier poster said if it aint broke...
I have ramped up my appt with MO as in brain fog Saturday morning I failed to notice/remember a traffic light that we have had at the end of our road for the last 5 years (!!!!) and drove straight through a red light. (Complete with my 9 yo DD in car.) This was a red light LITERALLY. Anyway now have appt with MO on Thursday evening. Will let you know what transpires.
My Mo's suggestion perhaps:
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ndgirl,
I was 10% ER+/PR-/HER2-
From what I understand tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor and the AIs BLOCK the production of estrogen and BLOCK the action of estrogen on receptors which is why it works better. I am assuming that we still produce estrogen while on tamo but it doesn't connect to a receptor whereas the AI blocks it from even producing. This is why we get the bone pain, the purpose of the estrogen is to provide a coating around the bones and joints, less pain on tamo. Totally removing the estrogen leaves the bones/joints dry, hence the pain on the AI. This is my understanding - hope it made some sense. Chime in if I am wrong, I am all for gaining knowledge.
In addition to having a double mastectomy, I chose to have a complete hysterectomy (removing even more estrogen putting me in full menopause). This is one of the reasons why I am very comfortable staying on the Tamo. It has been around for years and has been working just fine for pre/post meno women. For me, the Tamo and not having the lady parts producing estrogen is a double bang for the buck. Personally, I think the AI is too strong for women who are in full meno. Its a shock to the body. We are already going through a change and to add a drug that does what the body is naturally doing makes it worse. Again, do what works for you and what your doctor advises. Good luck with your decision.
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Alright, So I put a call into my Onc about the brain fog... She has since written me a script for Ritalin. I am willing to give it a shot! I'll keep you guys updated on how it goes.
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Good luck Cindy let us know how that works. I hate the brain fog.
Thank you Lonnie for the explanation,. that made total sense, I had my ovaries out just this past March as one grew to the size of a baseball and the other was large also and causing me pain. My MO said again that they do not know what exactly Tamoxifen will do on people so he could not rule out that it was caused by that. My OBGYN and Surgeon both agreed with my history and family history of cancer that it was a good thing to have them removed and I agreed. Hot flashes get to be a bit much, but I am doing ok.
I will talk to my MO this Friday about the AI as I am 100 percent ER PR positive ( that freaks me out). I am already having hot flashes and a lil joint pain I can not imagine the AI.. UFFF.. I sure wish there was a one size fits all remedy!!
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ndgrrl,
someone on here recommended Magnesium for hot flashes. I researched and found that magnesium citrate was better. I started using it. I take it in the morning along with my tamoxifen and again at night before bed. It really helps with the hot flashes. I find that I sleep better also.
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Hi, I went for my annual check up with my eye doctor today and he told me that he believes I have a start of a cataract. Tamoxifen causes cataracts and I guess I am a lucky one who it affected. grrrrrr..0 -
Ndgrrl sorry to hear of cataract.
Had my appointment with MO last night re brain fog.
He did listen and spent a good bit of time on me so that was good.
He asked lots of questions re stress, worry, depression etc. I can see why he was barking up that tree as we have had two stage 3 cancers in our house in 2 years - me in 2012 and DH in 2014 - we are young folks, well young-ish (I'm 47) our youngest child, DD, is only 9. So yes we have had a lot to deal with but I honestly do not think i am overly stressed, worried, depressed but he was right to explore that potential cause.
He then conducted some routine reflex tests - all fine. Neither he nor I think i have anything bad (eg brain tumour) but he referred me for MRI to rule out any bad cause before making a change to tamoxifen. Here in Ireland MO is in a hospital and any tests he orders will take place in the same hospital - everything is integrated. Insurance is also integrated so once consultant orders test it is accepted, I don't have to go through any waiting for approval, so MRI will happen very quickly. I don't remotely expect anything bad but it will be good to get it ruled out.
He said he would have kept me on tamox for 10 years. This is the new protocol. It used to be 5. I had read, as I'm sure some of you had, that trials of women taking tamox for 10 years showed improved outcomes over women on it for 5.
I will add an interesting aside here: My Aunt had early stage BC, 17 years ago in the UK. She had lumpectomy, rads and 5 years tamox. She was then asked to go on that tamoxifen trial, taking the tamox for a further 5 years. She said no thanks. She is alive, healthy and 78 as I write. Now IF she had decided to go on that trial she would probably also be alive, healthy and 78 right now. But she would be part of the "improved outcome" figures. Proves nothing except that she didn't need the extra 5 years tamox to stay well, and of course there was no way to tell that in advance. But it certainly made me think that the improved outcome might not be all due to tamox and in at least some cases due to that these women were going to be fine anyway.
In my case MO said he will want me to stay on treatment to deal with oestregen indefinitely. I suppose that is because I was stage 3 when it was detected, it had got into lymph nodes, so any illusions I had that it was just going to be 5 years tamox were firmly put to bed at this appointment. He said he would have prescribed 10 years tamox and then moved me on to AIs.
MO ordered bloods with a view to seeing how menopausal I currently am (bloods have tended to suggest I am getting pretty haggard inside!) and says once MRI comes back fine he will probably move me directly onto AI's instead of tamox.
MO said tamoxifen doesn't kill brain cells and tamoxifen doesn't cause dementia. (I didn't argue, tho' on web you can read that it killed the brain cells of unfortunate mice in laboratories and right here on BC.org you can read that women who have been on tamox have higher inccidence of dementia, particularly in the group that had both chemo and tamox). He did mention that chemo could cause cognitive impairment for years after. However he stopped short of saying tamox was causing my symptoms.
I felt satisfied with the appt because he certainly took me seriously and is investigating, and is probably going to change meds. Hopefully AI's will not be worse than tamox is my only concern, but since I have now learned he wants me on some form of med to deal with oestregen for the rest of my life, it seems I would have been heading for AI's anyway.
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Question for you all. I breezed through Surgery in October 2015, Breezed through 7 weeks of radiation and now I have been on Tamoxifen for 4 months (Since Feb 14, 2015). I thought I was going to Breeze through this as well, but I was wrong. It hasn't been terrible just Uncomfortable mostly at night. I ache (and many hot flashes which I can deal with)...and I have trouble sleeping because of the achiness and then I get over tired and then I get emotional. I am not a complainer and if you were to meet me on the street you would never know anything was wrong. My family doesn't even know the extent of it, except I am sure they can tell I am a little more emotional and crabby!
My question is - Is this normal? Will it go away? Does anyone have any suggestions on how to help the achiness at night. I have tried every form of drugs (Ibprofen, Naproxin, Tylenol) and even tried Melatonin. It does help a little.
Thank You!
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