Bottle o Tamoxifen
Comments
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Gl. But if it gets bad, you can go back on t.
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scrafgal If Tamoxifen works for you, there is no reason to go on Armidex. You could try it but if Tamoxifen works for you then why switch. I have been in menopause since my chemo and I have stuck with Tamoxifen for 7 years now. I refused to switch because of the joint SE's with Armidex. I still have minor joint pain and hot flashes but they are both tolerable. It's up to you whether you switch or stay, not up to your doctor. Best wishes.
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Leeza13
If I cannot deal with Arimidex then I take comfort in knowing that I can go back to tamoxifen with no problems. However, with my 46 oncotype, grade 3, 4cm tumor, I feel that if I can reduce recurrence risk even a little, then Arimidex is worth a shot. I figure that almost nothing could be as bad as FAC chemo but I admit that I am worried about joint pain with Arimidex. I exercise regularly and want to continue. I start tomorrow with Arimidex. Yipes!
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I would start today but I want to get a good workout in beforehand...the first day on Arimidex might be rough!
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Try going into not expecting ses. If you're mind is set on it you'll start seeing them even if you don't have them or it's not that bad. Some have minimal or no ses. Remember most people who are doing well are not on the boards anymore. So the board has a tilt toward bad news.
It's like going to a tough job interview with your mind thinking no way..
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Totally get it, Scrafgal, I won't start tamoxifen until after my race in early September. And if, as I suspect will happen, my endocrinologist suggests prolia, I'll hold off on that too until after my race.
While I don't want a recurrance, I also want full quality of life and for me that means staying very physically fit and active.
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Hi Goldfish- good luck this time around-
I have osteopaenia so am on tamoxifin
( post menopausal)- Just finished
my first month ( i take 20 mg every nite
at 9- with water)- I did not start
low dosage only because i didnt
know you could- just went along with
what oc said- no side effects
at all ( yet?!)- however- i am well aware
from hearing from many women
that side effects may be worse
in pre menopausal - i also am aware
that side effects are a hit and miss-
some women have a ton- some have
few - some have none- etc
I any case- because i have never been
on Aromatase inhibitors i cannot speak
for your case- but if anything- I as well
am still reluctant to be onthis drug-
the side effects unseen eg: blood clots
loom large in my mind-?i am looking for
any excuse to stop this drug- but seeing
as i have no side effects right now
i am still tsking it- so if anything-its
possible
you may as well experience this zero
effect- goodluck -0 -
Hello everyone. I’m 8 weeks PFC (AC-T) and have been on tamoxifen for 6 weeks. I’ve noticed that since beginning tamoxifen, I’m experiencing heavy bone and joint pain, especially after sitting or laying down. I’m also having issues with anxiety. The hot flashes are no fun either. At least 5-6x a day. In addition, I’m also feeling nauseous on a regular basis.
Since I’ve only been on tamoxifen for less than 2 months, I feel I should give it another month before switching brands. Though, the SE’s are driving me crazy that I almost want to quit. But my mammaprint came back with high risk of recurrence. Thus, quitting tamoxifen isn’t much of an option
Any advice on what I can do about some of these SE’s?
Thanks in advance.
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DonnaleeNC - I'm in just about the same boat as you. I quit cold turkey my Estrace Hormone pills upon Dx. Instant Hot Flashes. Mine are so severe I have panic attacks. All I do is shiver and teeth chatter freeze, then a Hot Flash and have to strip, stand in front of the A/C and I even cut most of my hair off so I can run cold water over my head. Then I cool off and Round and Round I go, 24/7. My Doctors cannot find anything to ease the Hot Flashes.
I am seriously considering taking Estrace Pills again just to have a 'Normal Life" for a second. Yes, During my panic attack, at that time I would rather take the chance of having cancer again, and have some relief. Its that bad. I am terrified that if I start Tamoxifen it will increase the intensity of my Hot Flashes - I will go crazy.
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Thanks Cassiecanada for the encouragement, maybe I will be one of the lucky ones on Tamoxifin with little to no side effects. I took the first 20 mg pill last night and a baby aspirin as well. I think I will do every other day for a week or two. I am having total knee replacement in September so the baby aspirin is to prevent blood clots with the knee surgery. Lots going on so I feel if I stay busy I won't have time for side effects. We shall see.
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Wow, rljes. Your hot flashes are no laughing matter. They really are interrupting your life.
I appreciate your post - we are indeed riding in the same boat, while looking for different life preservers.Here is a link that may be helpful:
https://www.webmd.com/menopause/guide/menopause-hot-flashes#2
I take gabapentin for chronic pain issues, but I didn't know it could potentially help with hot flashes. Maybe that's why I never had them - thank goodness, I don't think I could handle that AND the crazies.You probably have already done your own research, maybe you even have tried some of these medications. It kinda sucks to have to take medications to combat the side effects of other medications. But it also kinda sucks to think about going off your tamoxifen and worrying about whether The Beast will return. We both are faced with a tough choice.
Let us all know if you do find something that gives you some relief.
Bless your heart, I'll be thinking about you.
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i would switch manufacturers. There are a few. Pharmacies don't carry all of them. So you may have to call. Teva and mayne and I've seen watson posted.
I had knee replacement in march. Work hard the first couple weeks on your range of motion. Scar tissue starts to slowly set in. First 6 weeks needs to be focus on that. Strengthening focus comes after. My surgeon stopped tamoxifen until my post op appt 2 weeks later because of the risk of stroke and clots. You'll be stopping baby aspirin too. I've worked with hip and kner surgeons at the center for joint replacement here for 10 years so I know a lot about it. If you have questions, feel free to pm me.
PS.. if joint issues aren't resolved, I'd stop the t until you are in better shape after surgery. It is a tough painful recovery and you don't need t making other joints and bones feel bad.
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AngieinAmsterdam, stick it out. I had body aches too and they were worst at night, in bed, rolling over hurt. Everything felt sore and stiff. But that did ease off after a few months. The hot flashes remain. THey are annoying but I can live with them. The leg cramps, which mostly only happen at night in bed, are pretty fierce, but if I stay hydrated they seem a bit better. There are things you can do to ease the situation. I used to take my pill in the morning but now take it at night. Experiment. Take 1/2 a pill in the morning and 1/2 a pill at night, see if that makes a difference. Good luck and as Scrafgal says, you might find that the side effects are annoying but tolerable. Good luck!
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Dagnabbit! So frustrated. I tried once again to research the risk of recurrence of my cancer if I don't take the tamoxifen. I can't find anything about it. I do find information that suggests as many as 25% of women either don't start taking tamoxifen or stop it early. So if they have that patient population nailed down, why aren't they telling us the rates of recurrence in that population? This is frustrating. It's almost like researchers feel they have no obligation to look at that statistic, because they are convinced that we (the hormone-positive folk) should just take the tamoxifen. Maybe I'm just not using the correct search criteria.
While I'm ranting, I might as well say that if I see the word "non-compliant" just one more time . . . grrrr . . .
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Good advice Artista...
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Goldfish and Angiein I started on 10mg and after a couple of weeks went to 10 in AM and PM. After a couple more weeks I went to 20mg in the PM and after 10 days my ses we worse then the AM/PM so I went back to that and after 3 days the ses went down. My MO says many say to take 20mg at once for convenience, but it doesn't matter how you get the 20. After 4 months I have almost no ses, the biggest one is my messed up cycle and wondering if it will ever show it's face again. Good luck on your tamoxifen journey.
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Hi Donnalee- just curious- my own MO
gave me 2 sets of stats when going
over hormonal therapy with me -one set
was just straight up recurrence ( local/met)
without hormone blockers and the
second set was recurrence risk WITH
hormone blocker ( local/mets)- would
that info be on his report? I see its
on mine- that info would help you decide-
i say that because i know for myself,
benefit is so small for me ( 3%) that
at my age ( 63) i still struggle with
the risk vs benefit thing0 -
When I start the tamoxifen (in September), I will be on 5 mg a day to see how I do. If that's OK, I'll go to 10 and evaluate. But I won't lie, this will be a super slow ramp and I'll bail if the side effects affect me being able to do the things I love to do and that make me me.
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edj3 - I want to do exactly the same thing with starting really slow. I'm hoping my MO is fine w/ that. My appt is 7/31.
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Here's how I approached it with my MO in case this might be useful:
I shared that historically I've done very poorly with hormone-related drugs (I gained 30 pounds on the pill super fast, bled all the time--and when I stopped the pill all that weight vanished and so did all that bleeding). I said I want to do the slowest of slow ramps on the drug so that we can see how I tolerate things.
I also said I have a 10k race in early September and I didn't want to start any drug treatment until after that. This race is super important to me, it's the first one I'll have run since I fractured my pelvis running races in May 2018. Told him I'll take the first dose right after crossing the finish line but not until then. He laughed and said no give yourself a few days to get rehydrated etc. before you start.
And he said OK! He said we'll start w/ 5 mg a day, I'll need to split them and then see how it goes.
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edj, my pills are 20 mg and split fairly well down the middle into two 10 mg halves (at least that's the expected outcome). But trying to split those halves again ends up smashing the pill to bits. If you can get 10mg tabs and cut them in half, perfect. The other option to consider is that you can split a 20mg tablet and take 10 mg every other day.
I would suggest too that your first, and maybe second dose of tamoxifen be a full 20 mg...to get the drug up and running in your system. Then dial it back to the 5 mg, to keep the drug present and bumped up in your body. I say this based on the reading I did on low dose tamoxifen trials and most of them said the FIRST dose was a 20 mg tablet to get a good amount of the drug into the body, then they dialed it back to smaller doses. I do not take a full 20mg dose every day, but I based my approach on the model laid out by the researchers. Started with one full dose then dialed it back to 10 mg most days, 20 mg on Wed and Sun.
DorothyB, you might wait a long time for your oncologist's blessing. Some are game to try things a different way and others are strictly by the book. At the end of the day your oncologist is not the boss of you, he is not 'in control' of what happens. He is an adviser and you are relying on his expertise and guidance. But he has zero ownership over you. Ultimately what you decide to do has to be your own decision, and you do not need the blessing of your oncologist to do what you want to do. I DECIDED what I was going to do and told my oncologist this was the way it was going. I asked if he had any input and I was willing to listen to what he had to say. But I certainly was not willing to hand over my authority and autonomy because a white coat is not an authority figure. You do not need your oncologists blessing, permission or anything else with how you decide to proceed. You want to know his thoughts, that's what he's paid for. But after that, this is your rodeo. You get to decide.
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Hey runor, fortunately my MO has prescribed 10mg pills and is good with 5mg a day at the start. I'll get ramped up nice and slowly, which is my plan and as you phrased it, my rodeo
I'm glad, because while I'm willing to give this a try, I'm not willing to jump into the deep end of the drug pool. 0 -
I also have the 10mg pills and mainly take 5mg, the 10 cut in half.
I started May 12 with 5mg every other day for 2 weeks, then 5mg every day for 4 weeks...now I am about three weeks into 5,5,10 repeating...
I saw my MO last week and he was fine with my ramp up...and said he would be fine with me staying at 5,5,10 if this balances my continuing to take it vs SEs. His original plan was 10 a day.
I hope to settle into a stable pattern soon...so that making up by weekly pill tray becomes easier than having to remember the jog of 5,5,10.
I had DCIS so I have been looking at the new studies with only 5mg...but the pills do not cut cleanly so I am happy to do a couple of 10s per week to make sure I am getting at least 5/day on average
TT
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the pill cutter sold in drugstores works well.
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I jumped in and started Tamoxifin 2 days ago, 20 mg. I have tried all three of the AI's with bad side effects, mostly aching joints so Tamoxifin is my last resort. I am 71 years old and my recurrence risk is 10% with Tamoxifin and 20% without. I have read on here many people start with a lower dose and was wondering if there is any research about this being better as far as side effects are concerned or is this based more on people's experiences. Thanks for your info
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ses are individual. I've never heard of starting low dose and going up helps with ses. If they're going to happen they will.
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Don't recall reading any studies on starting low and building up vs starting w/ 20 mg, but the studies done on women w/ DCIS said that there were less side effects on the lower dose . . . so starting at a lower dose should give me less side effects starting out.
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I'll let you know how it goes after I do it--this is my preference. Bonus is that my doctor is OK with it but honestly if he weren't, I probably wouldn't take it. Yes, I know not everyone gets those side effects. I generally do get side effects from all sorts of medications and this one may be the rare exception. But if it's not, then some of the listed side effects would greatly impair my ability to do the physically active sports that are so important to me.
We all have lines we won't cross. For some, it's radiation, others chemo. For me, I'll try this drug but won't hesistate to stop it if it interferes with my quality of life.
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rljes: My MO said I could take what's called 'AM/PM for menopause. I found it on Amazon, it does seem to help some. I have horrible hot flashes as well.
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Goldfish, I have been on Tamoxifen for a year. I take it in the morning with my yogurt. The side effects are weird, for me they come and go and different ones from month to month. Right now I am experiencing massive hair loss on my head. I like have 20 different bottles of shampoo to help and have not gotten anywhere, I started the hair loss just in the last 4 months. I also break out like I have gotten bitten by bugs, I am seeing a dermo to figure this out. I try not to itch, when I do I scar. It sucks! But this comes and goes as well. I drink tons of water, like any where from 40oz to 80oz. My skin is dry. Oh, I am postmenopausal and have osteopenia. Supposedly tamoxifen will help with that only because I am postmenopausal. This isn't the case for women who have not gone through menopause. Also depends where you are in life, like where your hormones are as how the tamoxifen will work and the side effects, just all over the place. Not to mention your mental state, I take xanax which helps me, but everyone is different. What works for one may not work for another, just do your homework and come to this website to the forums, they have helped me. Good luck. Oh, I am 65 years old. The last time I saw my surgeon, he is for staying on tamoxifen, he believes that this pill works.
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