Bottle o Tamoxifen
Comments
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Annie and Cassie: I take it in the early morning because I too had issues with sleep when I took it later. I also take Synthroid. I take that an hour before Tamox or any other meds. My MO suggested taking Melatonin to help with the insomnia. I started with the low dose of 3mg and it has helped.
Sparklekat: I cant say I have experienced anything like that, but I have only been on the Tamoxifen since January.You should definitely follow up with your doctor regarding your symptoms.
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Caligirl- Thank you! I will be taking mine in the same manner. The Melatonin must be ok w/ your meds or your MO wouldn't have suggested it. I bought some today, but was concerned w/ the meds having issues w/ it. I am hoping to get some rest tonight, so I can not be ripping people's heads off due to my short temper.
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Sparklekat:
I just looked at my tamox info sheet from the pharmacy. It says to call your doctor immediately if you are experiencing confusion. A fuzzy memory for the weekend seems like confusion to me. Please call your doctor Monday morning.
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Hi all,
I've reached my 5years on Tamoxifen-still clear. No major side effects..mostly a nuisance. .now fewer hot flashes at night-I've learned not to wake up, and have reminded my husband not to steal the covers while I'm cooling off.., weight gain, some insomnia.
Since I have needed to use Estrace cream for extreme vaginal dryness my MO wants me to go for another 5 years. So I carey on.
Anyone with 10years? Or any changes 5-10year stint?
Hopeful KBP from New Hampshire
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I had a big raging, crying meltdown yesterday. This started after my bf criticized a piece of jewelry I made and was wearing. Making jewelry is one of the only things that gets me out of head and away from reading about cancer all day long. Still, I think my reaction was way over the top. Was it the Tamoxifen? Pent up emotions about having breast cancer and a mastectomy and no control over my future? Pretty worried right now :-(. I've told him to stay away from me until I get this sorted out.
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Yes, calling my Dr whenever they decide to show up for work. And apparently I didn't have grapefruit on Friday! Haha I talked to my friend yesterday and she was like, "Yeah we discussed that but then I told you there wasn't any in the salad I was making" so its gotta be the Tamoxifen. I seem more clear today but for sure I'm going to my Dr. I manage 22 million dollars (budget accounting) so the mental fog thing is absolutely unacceptable.
-Sparklekat
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Katcar - making jewelry is the only thing that works for me too! Never did it before cancer or even thought about taking it up a a hobby. Now I am a bead hoarder!😊
Sparklecat - brain fog was one of the issues I had on the meds as well. Couldn't handle it. I felt like an alzheimers patient - no way I could be a functioning member of society on those meds. Sigh. 😥
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Hi BayouBabe! It is nice to share a love of beading. I figure it is akin to knitting, which I have always admired but never had the patience for. I'm going to have to start parting with pieces--just have too much of it now. It does get a bit obsessive ;-).
I am sorry for those of you experiencing brain fog. Some days, I have trouble finding a word to describe what I want to convey, but that is very different than feeling like you are in a state of unreality and having big lapses in memory. I hope my emotional lability the past two days is just a cleansing cathartic event and will pass. I could not stand myself if I were like this all the time. I guess if it continues, I will try Lexapro, which is sitting in my cabinet in case I need it.
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Hi girls ...
My MO has me taking a baby aspirin every other day. I honestly don't remember why - she did tell me - but my short-term memory isn't what it used to be, LOL!! All my docs say I should keep taking it, so it must be beneficial.
I was done with hot flashes as I was already post menopausal when I was diagnosed. They came back with the Tami, but not too severe.
Supplements I take are multivitamin, D3, calcium, biotin, magnesium, B6, B12. Some of that is for other non-cancer related issues.
In addition to Zoloft, Tamoxifen and a very small dose of Ambien to sleep, I take 300 mg of Gabapentin 2x a day. The gabentin changed my life in such a good way. The chemo-induced peripheral neuropathy (CIPN) has severely limited my mobility, and I feel like it gave me me my life back. (Don't be afraid of the side effects.)
I use Vagifem inserts for the vaginal dryness. It really, really helped. Nothing even close to spontaneous sex - the dryness is an annoyance - but the Vagifem helps. Both my MO and my gyno recommended it.
For any of you taking statin cholesterol drugs ... statins caused me terrible leg pain & muscle weakness (about 3-5 months into the meds). Put that on top of the neuropathy and it is pretty brutal. It depends on how you tolerate statins. I needed to take a cholesterol medicine, but the leg pain ... ! My GP and I decided on taking it every other day and it helped.
I am not interested in taking Tami more than 5 years ... but I guess I will burn that bridge when I get to it.
Happy spring!
Debbie
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Hey Sparklecat, I had that same reaction. I did tamoxifen for 3 months and during the third month things started going noticeably wonky. My concern was that I didn't want to be prescribed something to make me feel better about these cognitive side effects, I wanted something without these side effects. I found a study that compared tam. to exemestane to healthy controls (about 100 per group). Tamoxifen was associated with poorer cognitive functioning (including verbal memory and executive function) compared to controls. The women on exemestane did not differ from the controls. I found this study to be pretty persuasive as it was a within-participant design so looking at changes in the same women over time. I found another study in which the effects of tamoxifen on cognitive functioning was demonstrated even when the comparison group had experienced lumpectomy and rads, indicating that these effects are real and not a matter of recovering from the effects of being diagnosed and treated. I had a big kerfuffle with my MO but she finally prescribed a lupron shot and exemestane. I start tomorrow in my post-tamoxifen life...
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Professor! Can you supply a link (PM is fine) for these studies? All of my "slowness" and inability to remember MANY things cannot all be chemo-brain! I never heard of what you are discussing. I would love to find an alternative.Debbie
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This one is about the effects of tam on cognitive functioning.
This one compares tamoxifen to exemastane.
I hope these links work.
A quick google scholar search of "cognitive side effects tamoxifen" is all it took for me to discover this treasure trove of not very good news...
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I didn't have chemo, and at times I think I'm losing my mind..Can't remember names, even what I ate for dinner. Never was like that before Tamoxifen, I'm 53. Most pills mess with our mines. Statins did that to my husband.0 -
I never had chemo or radiation either and suffer greatly from CRS (Can't Remember Sh*t!). People used to tell me I was almost savant-like in my ability to remember phone numbers and birthdays. Now I can't remember what I walked into the next room for. And don't get me started on the ever creeping belly fat!! Just saw an article in the latest Prevention magazine that talks about how Tamoxifen causes very slow and very steady weight gain, mostly in the belly. Great. Fat and dumb. That's no way to go through life. (Didn't I hear that in a movie?)
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Hahaha lala1 your post made me lol - I'm in the same club except I haven't even started Tamoxifen yet, there is no hope for me
Femara made my hair thin out, so I will be fat, dumb and bald!!!0 -
Hahaha, CRS. I have that but I had that before Tamoxifen, courtesy of going through menopause. I call it "mental-pause."
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Hi everyone, Happy Easter a day late!! I saw my MO, my plastic surgeon- had a bone scan, blood tests and a mammo and breast exam- I am good on all accounts except for terrible night sweats from my ovaries being removed.
I had been off Tamoxifen for 5 weeks- One week before surgery and 4 weeks after. I talked to my MO and he said it was up to me to change to an AI at this time or continue on Tamoxifen and see him again in 3 months and decide at that time. I think he was giving me a chance to settle down after surgery before deciding on a change--
Have any of you gone off Tamoxifen and went back on? WOW was I dizzy today, I am wondering if all the beginning side effects will start all over since I had a break?
My MO told me there is a benefit in the new studies of changing from Tamoxifen to an AI within the first two years. Anyone else heard of this?
I do feel weepy and try not to melt down lately, I believe its from the loss of horemones be it Tamoxifen or lack of estrogen- UFFFFF
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I think feeling is from lack. Of hormones. I feel the same way, chemopause and Tamoxifen has me weeping for everything. I cried the other day as I was listening to a song...it sucks but I guess this is our new "normal".
I have the same that it is beneficial for postmenopausal women to be on Tamoxifen for two years and then switch to AI
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I have heard the same, to switch. With Osteoporosis, I will get another bone density test in February before I decide.
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Lala1 - OMG! I also had a ridiculous ability to remember names, faces, phone numbers, part numbers, account numbers ... a co-worker (long time ago) once asked me why I did not have customer phone numbers on my rolodex. It was because I memorized all of them. Now, I can recall in minute detail shit that happened when I was in my 20's, but cannot remember why I walked into the room.
And it was Animal House ... "Fat, drunk and stupid is no way to go through life, son."
Professor ... thanks for the links.
I got results of my latest bone density ... bordering on osteoporosis. The first thing the nurse practitioner talked about was putting me on some weekly calcium that would probably make me sick to my stomach. Oh groovy, here we go again. Let's get our tickets on the pharma train!
Happy spring!
Debbie
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girlpowerdebbie, I am on Calcium, magnesium and Vit D3; I haven't had any issues, but I know we are all different. I am just hoping my bones will increase instead of decrease! I believe you need Vit D3 in order to properly absorb the Calcium, in case your NP didn't tell you.
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GirlPowerDebbie--that's it! Animal House! I may have to do the drunk part just to get through the fat and stupid part!
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ndgrrl,
I too was on tamoxifen for 6 weeks, got off for ooph/hysto surgery and went straight to Aromasin. I can only recall some hand stiffness and really bad flashes from the Tamo. I WAS ALSO DOING RADS AT THE TIME SO I WASNT SURE ABOUT THE SE's Accuracy. But.....the aromasin has me fat, horrible joint, muscle, shoulder pain, really stiff painful hands. To the point of limping. My feet hurt like hell. I suffered through for about 8 months. My mo took me off on 3/31. Said to wait a month and go back on Tamo 5/1. I'm really feeling the difference of not taking anything. Feels really good, not much pain. I'm hoping to lose some weight between now and 5/1. It works out well because I get fat grafting done in 4/21. I'm hoping I can tolerate the tamox better. My mo made it clear that not taking anything wasn't an option. You don't have to switch. Tamo has been around working just fine long before any of the AI Inhibitors, yes there is a benefit to do 2yrs on Tamo and 3 yrson AI, my mo says it is slightly better in reducing recurrence.
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UGH! I have been on Tamo since Oct 2014 and besides dealing with not being able to regulate my body temp, I have brain fog and gaining weight.
I find myself making too many mistakes at work and not being able to recall details about something I did a week ago. I guess I will have to get in the habit of making lots of notes to have something to rely on when asked why or what the hell did I do this time!
I have been walking/running about 35-40 miles per week. I am now going to a personal trainer twice a week and guess what? I am GAINING weight. Its not muscel, its belly fat. My clothes keep feeling more snug everyday no matter what I do. This is about to send me into a depression.
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cidney, I am with you on the weight gain. I feel like if I ate like a normal person does, I would've already gained 20 lbs. It is so frustrating...and seems counter-productive, since fat (esp belly fat) stores estrogen...what happens when we get off of Tam and we have all of this excess fatty estrogen around our middle?? UGH! I do not walk as much as I know I should, but I am not a couch potato. I have gained about 2-3 lbs since I started in May of 2014. At this rate, I will have gained at least 15 lbs by end of yr 5...if I'm lucky. I may go see an Endocrinoligist soon.
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Count me in on the loss of short term memory and weight gain. Now feeling depressed. My MO wants me to try Effexor. I have reservations. But feel I need something.
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Watch out on weight gain I gained 30lbs total in the 2 1/2 years I was on tamox. Although I did not exercise. Apparently that is a must..Never had to in my life but do now.
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Now that I am postmenopausal due to total hysterctomy and BSO I asked my BS what he thought about me staying on Tamoxifen or switching to an AI. He's very well known in his field and keeps up to date on the studies. He said that going on an AI would only give me about a 3% reduced risk of recurrence over Tamoxifen and that the increase in horrible side effects would not be worth it. He feels that since I do pretty well on Tamoxifen, he'd recommend I stay on it as long as possible. My sister's mother in law has had breast cancer twice and was on an AI. She said the bone pains and such were so bad that she quit it. Said she'd rather just risk dying. That's the problem with these drugs....for some people the SEs are too much so they quit all together. I figure everything is worth a try but at least I know if one day I go on an AI and it's horrific, I can always swap back to Tamoxifen.
Oh, and my BS also told me that at the last conference he went to, the question was asked "How many docs here have patients who lost weight on Tamoxifen?" and he said out of a few hundred docs, only 1 raised his hand! He said weight gain (and specifically belly fat) was almost guaranteed to happen so I might as well accept it. So I work out a little more to try to offset it. I've gained 10 pounds since my mastectomy 2 years ago and 5 of them were in the last 3 months after my hysterectomy! Being a woman is a tough job!!
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Well, I escaped the weight gain ... and I thought the belly fat was just beer! I settled about 142 lb, but had gotten up to 155 during chemo.Have any of you experienced this? Your brain thinks of the next thing to do (such as walking to the frig to get milk). Your body heads toward the destination - frig - and then you stand there and "buffer" a minute until you remember why you are standing in front of the frig. Buffering, that is what I call it. Happens to me all the time. That is cognitive decline due to the Tami, chemo brain, whatever you want to call it ... but my short term memory is shot.
Blah ...
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GirlPowerDe, love the term "buffering" and I am going to have to steal it from you. I have also noticed if I have more than 2 or 3 alocholic beverages, I can not remember anything afterwards. I stopped drinking during the week and only have a drink on the weekends if we go out for lunch or dinner. I will probabaly have to stop drinking 100% - thanks Tamo!
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