Bottle 'o Tamoxifen

Rmanmom

Professor50 I am also 51 and very active so please weigh in how you do on round 2 of Tamoxifen. I did great on it for 18 months, it is only the last 6 months that have been difficult. My SE's are mostly nausea and light headedness. My MO gave me a script for a bone denisty test and told me to get a work up from my obgyn to determine whether or not I am through menopause and then I can switch to an AI if I want or I can stay on Tamoxifen. I started splitting up the dose and that worked for a while but now I am feeling crummy again. So I decided to take a very short vacation from it and from day 1 I felt so much better. Does anyone take a prescription anti nausea medication with their Tamoxifen? I really do not want to take an AI at this point. I sleep great and do not have too much fatigue and no joint/muscle pain so other than the nausea it has been okay. I am committed to taking something as I had a positive node and am triple positive. To those of you just starting out, please do not be alarmed by those of us on here discussing SE's, most of us do okay and find it manageable, and honestly, if I need to stay the course, I can.

Sjacobs146

I just turned 49, and was pre-menopausal prior to chemo. I had regular period right through my 3rd treatment, and nothing since then (Dec 5, 2014). My MO said that I had a 50-50 chance of my period coming back. I'm not missing it at all.

I have been on Tamoxifen since April and have absolutely no SEs. My MO says that only 25% of the women in her practice have any SEs from Tamoxifen and only about a handful have severe SEs. If you haven't tried it, please give it a chance, it is likely that you will have only minor SEs or even none at all. If you never take it, you'll never know, and you can always choose to stop

gaia0132

I am feeling a little relieved to read these recent posts sharing the Tamox experience- everyone is so different- but some others I read were horrifying!

I will start Monday 8/31 which gives me a 2 week head start before I start Herceptin

Praying I'm in the minimal/no SE camp- just turned 50 and am stage IV out of the gate so I hope I can get some break!

Thanks ladies

lala1

I am almost 3 years on Tamoxifen. I've had SEs for sure but nothing I can't manage one way or the other. For my muscle/joint pain which is my worst SE, I exercise, swim, practice yoga, take Turmeric, ginger and magnesium and manage to keep my pain level around 1 or 2 just depending on the day. I hate to think 7 more years but then again, it is doable for me. I think the surgeries were much worse. I did have problems with nausea and dizziness for the last year and a half and at one point truly thought I might not make the full 10 years, but then I decided I needed to do something ( as opposed to most of my docs who just said "Welcome to menopause!" and found that I had a low grade chronic sinus infection. I didn't have the usual symptoms of allergies like sneezing, runny eyes, etc just nausea and dizziness. Once I did a course of antibiotics (specifically Clindamycin after having no relief with Ceflex) I feel awesome! Like the old me. I still have some issues. I am in menopause now since my Jan hysterectomy and experience all that menopause has to offer like hot flashes, and yes, very mild and intermittent nausea, buzzing in my head sometimes, weight issues, mental fog, etc. All symptoms of menopause and Tamoxifen. But I figure if I can fight through BC I can fight through my SEs from Tamoxifen. I know some experience way worse issues than me but I do think it's worth seeing if you experience any at all. You never know if you'll be one of the lucky ones who said through it. My BS said I should try to avoid the AIs as long as I can exactly because I am doing pretty well on the Tamoxifen. He said overall the AI SEs are worse.

Blownaway

I would like an update from Professor 50 also. I started Tamoxifen around the beginning of the year (2015) and bragged about how I was having no s/e's with it, then at the 6 month mark, the pain started and gradually has gotten worse. I didn't relate it to T until about 2 months ago. My bones, joints, muscles, head absolutely ache off and on all day with "zingers of pain" that make me cringe. I've never been a sissy and hate the thought of addiction but my doctor gave me Gabapentin and I am steadily upping the dose and buying every little supplement that anyone recommends (been on magnesium with my calcium for years) now have added turmeric, glucosamine and will get ginger. I've had some results - sleeping better than I have for a long time (I take 3 Gabapentin before bed, along with 10 mg melatonin). My onco glossed over the possible s/e's saying that everyone is different and I know she's right but DANG!!!!

Professor50

Tomorrow is my first day back. I am planning to do 1/2 a pill in the morning and 1/2 in the evening to sort of ease into it. I didn't have many physical SEs the first time out so hopefully it will be like that this time. I did sleep really well on tamoxifen so I'm hopeful about that! fingers crossed. ((Yes I can actually cross them now, one month post-AI!))

Ridley

Prof 50 -- I switched to taking tamox 10 mg in the morning and 10 at night -- ran it by my onc and he is fine with it. I think it helped me a bit. I hope it does you too.

Blownaway -- sorry to hear you are experiencing so much pain. Tamox seems to be sneaky regarding when the SEs show up -- I seemed to do pretty well until about 6 months in as well (except for my hair thinning which could have been from surgery as well), but then it hit me -- mostly mood impact. I hope they start to let up.

FastWalker

Hi all,

I just took my first Tamoxifen pill about 20 minutes ago. I have been dreading this moment for so long. I got myself so worked up that I was shaking when I took it. I tend not to do well with medications (even over-the-counter). I will most likely be on it for 10 years - so it better be kind to me.

When is the best time to take it? Morning or evening?

Professor50

Hey All, Hanging in there/ so far so good. First, yes, according to my MO, it used to be the norm to do 10mg in the morning and 10mg at night. They changed it to 20mg all at once, only because people were forgetting to take the second dose. There is no difference, in terms of effectiveness. I think that whatever allows a person to benefit from this drug is good.

Second, I am getting ready to switch to taking it all at dinner time. I seem to recall the last time I did tamoxifen the nicest SE was suddenly sleeping really well through the night. It seems like that worked when I took it at dinner so I am making that switch today. (I am not sleeping well at all these days: I am very much back to normal which is not fun).

Good luck everyone!

ladyb1234

Fastwalker, I take my pill mid-day. I experimented when initially starting the Tamo to determine what time of day worked for me individually. I started taking it in the evening but it wreaked havoc on my sleeping and hit me hard about mid-morning in terms of some SEs I was experiencing early on. Taking it in the morning caused nausea. Mid-day works best for me.

FastWalker

ladyb1234: Thanks for the advice! I hear that it takes some tinkering to get the best time of day down. . . I am already prone to insomnia so don't want to make that worse. . . About what time mid-day?

Shimmymoo

Hi

I'm starting tamo this weekend. Anyone have any suggestions about when to take it? Morning? Before bed? With food? Without? Just wondering what works for everyone!

Oops! I just realized the thread above this discussing time of day! Sorry! If anyone has strong feelings one way or another your response would be appreciated!

What supplements do you suggest to help with se?

Many thanks!!

gemini4

Fastwalker and Shimmymoo, I personally have not noticed any difference in taking it in morning vs evening or with/without food. I feel no immediate side effects, only the broad sweeping effect of hot flashes, weight gain, and some joint stiffness (which are all symptoms of menopause and therefore might not be from Tamoxifen).

ALittleBitBritish

take mine at night, have it on the nightstand and take it with a cup of hot tea - once SEs wore off I have no issues with it

ladyb1234

Fastwalker, I take the tamoxifen between 12-1 and with food. I am one of the individuals that has and still has a lot of SEs with Tamoxifen so had to experiment with the different times of day and with/without food. Lunch time with food has minimized some of the SEs like hotflashes, nausea, insominia and brain fogginess. Hoping you have no SEs and tolerate Tamoxifen well.

willowreed84

I take my tamox with dinner.  I got a little dizzy the first 2 weeks when I started out taking them in the morning so I switched to evenings when I could stay home afterwards.  The dizziness passed after 2 weeks but I stayed on the evening plan.  I generally take meds with food because I get sick with an empty stomach full of meds.:) 

live_deliciously

ive just been on tomoxifen for two weeks now. Right now I'm taking at breakfast and am considering to take at dinner going forward. So far only side effects is some dizziness a few days but I notice it depends on how much breakfast and liquid I have before I take it. Having a little constipation and a little vaginal discharge. Nothing major so far.

Does anyone know if tomoxifen doesn't work on the tumor would you still the side effects? Is this any indicator?

slothabouttown

LD,

I've read that some studies say hot flashes from tamoxifen can indicate its effectiveness.

Lots of hot flashes = its working

Not a lot of hot flashes = not working

This freaked me out a little because I have experienced a decrease in hot flashes with tamoxifen compared to chemo. I have a couple at night and maybe one or two a day which seems really mild to me. But, I've found just as much info out there saying absence of hot flashes on tamoxifen are not an indicator of effectiveness. When I find that conflicting info I always choose to believe the data that errs in my favor and keeps me from obsessive worry.

Professor50

Actually, I think that there was a rather modest study indicating that side effects were associated with it actually working and no side effects indicating that it was not working. HOWEVER, later, better powered studies (those with large samples) showed that this was actually not the case. It seems that the side effects are independent of effectiveness.

I am hoping that this time out the side effects are more manageable so I can stay on the drug longer.

Among the things I am doing is compromising a bit more than I was willing to do before. I am trying to be more flexible. Yes, I may be slower, mentally and physically. But I CAN deal with that. I do not have to be super human, even though it felt nice to be that way! I can give myself more time with tasks; I can jot things down and keep my calendar more written down and less in my head. I can bear down and remind myself that when I have trouble remembering a word, that is a small price to pay for not having a recurrence. I can let people see that I am a fallible human being. Because that has always been true even if I didn't want to admit it. Or it didn't feel so obvious.

Every time I find myself searching for a word that just won't come, I promise to conjure in my mind's eye the image of my son, 11 years old and adorable. I can hesitate during lecture (and over-prepare instead of winging things so much) so that that little boy will have his mom around. I am a proud and stubborn person who did not want to change anything about myself because of cancer. Now I feel more like, maybe, I can be even prouder of myself if I let myself be changed. Such a struggle...

FastWalker

gemini4: Thanks for the reply. Sorry you are getting some symptoms. Do you think walking would help a little with the joint pain? The reason why I ask is because I have had back problems and walking seems to help me.

ALittleBitBritish: Glad your side effects have worn off!

ladyb1234: Sorry you have had a tough time on Tamoxifen. I am already getting symptoms. (Didn't think it was possible so soon . . .) It is making me nauseous, tired, light headed -- and I am getting a feverish warm feeling. (Not quite a "hot flash" yet - but I feel uncomfortably warm.) I have been taking it with food, as I find most pills are easier on a full stomach.

willowreed84: I am getting dizzy too - like when I get up from a chair. Glad your dizziness has subsided! I am also thirsty as heck and can't seem to drink enough water. (But at least that is easily remedied, right?!) I can't even take vitamins on an empty stomach - so I fully concur.

live_deliciously: Drink plenty of water. (I started tamoxifen on Friday and getting dizzy too.)

slothabouttown: Originally they believed that more symptoms = more effective. Now, they are saying the original conclusion was wrong. So, hopefully, nothing to worry about.

Professor50: Glad you are learning to not be as hard on yourself. It's definitely a difficult thing to learn - I can totally relate. When I was in my early 30s, I herniated 6 disks. It was life altering to say the least. At first, I was SO angry and frustrated that I could no longer do certain things. I discovered (with time) how to do some things differently -- and what activities I needed to forgo. I had to learn to be easier and more patient with myself - no easy task for a perfectionist. In time, you will learn too.

BBwithBC45

I used to take my Tamoxifen mid afternoon for the first month, but then I switched to evening, and I take it with dinner. I don't know if I noticed much difference. I decided to take it with dinner, because I have to take baby aspirin with my Tamoxifen and it's easier on my stomach if I take it with food.

I do get hot flashes and am not a fan of them. I am gaining some weigt too and not happy about it.

BreatheDeep

Hi Cmo65 , have you decided whether to take Tamoxifen or not yet? I've had my bottle a month and the radiation Dr. said I don't have any more time to hold off so I need to decide. I am still completely on the fence on this, I still can't decide whether the 5-6% chance it will give me of not having a recurrence are worth everything it will do to my body, whether I have SE's or not ;-(

gemini4

FastWalker -- yes, exercise definitely helps with my joint stiffness. Swimming or water aerobics has offered me the most relief, but any movement is good.

Sjacobs146

regarding dizziness... I had it when I first started the tamoxifen, but I assumed it was related to my high blood pressure. I was fine when in an upright position, but laying down was a problem. It eventually went away on its own, so now I'm thinking it was the tamoxifen, and I adjusted to it

Astarte

Yes, I will. I just have to pick up my tamoxifen from the pharmacy. I really hope it doesn't make me pack on the pounds.

B123

hi ladies has anyone ever had se from taxi fen with stomach aches and pain, feeling nauseas? I have tried taking it 3different times in past few years, I just can't tolerate it. I'm not sure if giving it a few weeks is best? I hate feeling this way, my stomach is gurgle with load noises, I feel pressure in pelvis. When I'm on the arimidex I feel great..

FastWalker

BBwithBC45 : I wouldn't be happy with hot flashes or weight gain either. I am thinking of taking baby aspirin since I have varicose veins, which raises my risk of blood clots. I will ask my PCP next month when I go for my annual physical. (My MO was non-committal - basically said it wouldn't hurt.)

BreatheDeep: You could try Tamoxifen and if the side effects are intolerable, you can always stop. Did you do chemo? Some kind of systemic protection is important - that's why I ultimately decided to take Tamoxifen. (I didn't want to take it either, but didn't do chemo.)

gemini4: So glad you found something that helps your pain! I LOVE aqua/water aerobics! Those classes really helped me to rehab after herniating spinal disks. What's great too is that it exercises the entire body - and it's fun.

Sjacobs146: Glad your dizziness subsided. Mine happens when I get up from the chair or I bend over and straighten back up. Hopefully, mine will pass too.

Astarte: I read Tamoxifen can give you either weight gain or weight loss. Let's hope we are in the weight loss category!

B123: I sometimes feel nauseous. Taking it with food helps. Good luck!

Professor50

I don't want to be a downer but I have never heard of anyone losing weight on tamoxifen. I know it is in the prescribing information but someone here mentioned that a doctor at a crowded conference reported how a speaker said,"who has had a patient lose weight on a tamoxifen?" and only 1 doc raised his/her hand. Yes I am bitter . I gained over 20 lbs on tamoxifen and have struggled ever since to get these extra pounds off. Working out insanely and counting calories. So far to little effect. ARGH!!! Sticking with it in any case. Last weekend I went out and bought some new clothes. I couldn't keep hating myself every time I look in my closet.

FastWalker

Professor50: I second your ARGHHHH! (Thanks for the warning though . . .)

BBwithBC45

FastWalker, I'm at risk for blood clot too; I have a history of DVT. I started bruising easily and have bleeding with each bowel movement, so at my today's visit with the MO's office they told me to stop aspirin. I was not comfortable with this - I'd rather bruise than get a blood clot or a stroke, so we settled at taking the aspirin every other day.