Bottle o Tamoxifen
Comments
-
Spoonie, I am sorry you are having such a miserable time on tamoxifen. I will be two year this coming August and the side effects now are much less than in the beginning. Well. Mostly. There seems to be an ebb and flow to it. Before, the joint pain in bed at night was very bad. Moving in bed was difficult and hurt. I still get that, but not as much. The leg cramps seem to have eased off but they do come back when you least expect it. Hot flashes come when they come. I guess I'm saying the picture isn't all rosey, but it did get a bit more tolerable. The hair loss is annoying though since my hair ends up everywhere, including everything I cook!
But as to not getting the laundry and dishes done - I have a theory. (based on nothing). Tamoxifen suppresses our female hormones. So maybe our male hormones become more dominant. Maybe, in some small ways, we become more man-like. My husband can be surrounded by dirty laundry and dirty dishes and not do a damn thing about any of it nor feel that he has to. It does not affect him. Gritty floors, dusty furniture, scummy toilets, no effect. Nada. Like you, I find the burden of keeping a house up an increasing struggle. Tasks I used to fly through without batting an eye have become uphill battles. Then I realized, this is not a battle over lack of energy or ability. This is about not giving a shit. This is about thinking I ought to care about all this when I just don't. So there are dirty dishes. Who cares? I'll get to it when I get to it. This is NEW for me. I have been very driven, very OCD about cleaning. Now? Meh....who cares. I think the struggle you are having is with your own expectations more than the actual energy. Because for the things I like to do, I have all kinds of energy. Like drinking coffee. Man, I could do that all day long! While I sit on the sofa and watch the dirty dishes go nowhere. So you might be more able than you think you are, just not as motivated, which makes perfect sense.
0 -
Hey Nancy618,
Does your Teva brand actually say Teva? I thought I'd read that they were bought by Mayne, and you could still get the formulation but it wouldn't say Teva any more.
I think I want to try the Teva next. I've tried Mayne, Mylan, and now Actavis. Terrible fatigue on all of them, although the Actavis took longer to kick in and also put me in a bad mood. But my pharmacy reps can be a little dense (Express Scripts) and I think I need to be ready to point them to exactly what I'm looking for...).
I really hope the Teva goes better. What I'm experiencing now... I don't think I can sustain it. But I do want the protection of tamoxifen. I'm not ready to give up quite yet...
0 -
Salamandra, the manufacturer on the label said Teva. I haven't picked up the current scrip yet.
Runor, I think you're onto something. While I'm not sure it has to do with male vs female traits, the "I don't give a shit" feelings are real. I have attributed it to not getting enough sleep... been a battle for me since menopause...and getting older. I just don't have the stamina I used to have. I had to sit down after vacuuming ONE room last week. I don't want to do anything or go anywhere. It's either because I'm tired or in pain, but it's also that attitude. I too have energy for the few things that I want to do. That really hasn't improved much since off the tamoxifen for 4 weeks, so I don't know.
I'm with Salamandra... I want the protection of tamoxifen but I don't think I can live with the side effects, because the quality of life sucks.
0 -
I just picked up my scrip and the pharmacist talked to me. On the bottle, it says manufactured in Israel by Teva Pharmaceuticals. Distributed by Mayne Pharma. But it comes through as the manufacturer Mayne on their printed labels. Only a 30 day supply this time because insurance won't allow a 90 day because I just got a 90 day supply in April. It will be interesting to see what they give me the next 2 months.
Oh and I did some gardening today and my piriformis muscle is irritated and my sciatic nerve is giving me shooting pains now and then. That's kind of the way it's been for a couple years. But on the Activis and Mylan, it was painful all the time.
0 -
Runor -- LOL @ male traits via tamoxifen! That gave me quite the chuckle! I can see how that theory works in general, makes complete sense. Wish it were true for me as I have no energy for the fun things I want to do at all. I would love to go to a movie but even that is too much. I'd love to have my parents come visit but I am too exhausted to even talk most of the time. It's just ALL costing too much. I do think you're quite on to something though about the new energy level making me face my own expectations and come to the conclusion that yep, the dishes, the laundry, the errands, that x y z, aren't nearly important and can be survived through, as last I checked no one has died from not doing the dishes. LOL I'm sure my exes can attest to that fact. Hahahaha. Thanks again for the laugh and the support. I'm clinging to the hope that with the Gaba on board I'll have energy to do the things I love again.
0 -
Thanks Nancy. I'm also going to need a new scrip from my MO because of all the drug changes, but I'll see if I can talk to express scripts over the weekend and at least start sorting it.
Maybe 4th time will be the charm!
0 -
hi all, I am still trying to decide what I'm going to do
I stopped AIs at Easter and I'm feeling better, but somehow feel like I “should" be taking tamoxifen if I'm not going to do AIs
Spoon or, I'm sorry you are having such a hard time. That's what I felt like on AIs
I couldn't keep on that way
Nancy, if it is your piroformis, lie on a tennis ball on that sore spot, it will help break it up
My favorite PT of all time is in the Milwaukee metro area if you need a PT
0 -
2fun, I have tried the tennis ball but it was too painful. Now that is not as painful, I should try it again.I've been off the tamoxifen for 4 weeks now. I'm having occasional pains in my legs mostly at night. And still having hot flashes though not very often or as intense. In 2 weeks, I'll start back on them.
0 -
Finished two weeks at 5mg everyother day, started on 5mg everyday this past Sunday. Will stay two weeks at 5mg a day before deciding what to do next. Don't believe any new SEs are with me, but still suffering from SEs of Arimidex...mainly joint pain.
The 10mg pills cut okay, but they are soft and tend to crumble . My Rx is for 10mg a day...will see.
I have my first flying business trip leaving this Saturday, so have compression stockings ready.
I thought Arimidex SEs were bad...but DVTs, wow! TT
0 -
Hi
TrmTab - I feel the same way - that Arimidex started the excess pain. Even though I stopped for about 3 months now, it seems that it 'triggered' something in my body, and hasn't let up (like stuffed up nose, rash, shin, hip & spine pain)
I am starting tamoxifen 5mg AGAIN next week. I had thought it was making me more fatigue, but Its been 2 months off of it, and I'm tired beyond belief. I doubt if I'll ever go above 10mg - slow and steady like you are.
0 -
rjes and TimTab I find that Tamoxifen is tolerable as far as joint pain I have heard from too many about the pain from Armidex.. Even though I am in menopause, I told my onc that I would only take Tamxoifen. I have been on 10 mg daily for 6 years now and may ask my onc to lower it to 5mg. Seems like that is the going tolerable dose. I am tired most of the day. The hot flashes are what are most annoying.
0 -
Hi all. It's been a long time since I posted here. I'm due to come off Tamoxifen after 10 years in July. Just wondering if anyone else has been on it that long and how long it took hot flushes to go away? Or the same question even if you've only been on it five years? I'm now 48 so there is always a chance I'll be in menopause for real once I stop and that the hot flushes may not end. But I would so dearly love to have a break from them after 10 years! Am also hoping it will have a positive effect on my weight - not so much gain as where it's distributed. That may have more to do with age than Tamoxifen of course! Oh also, did your periods came back? I've had about three in 10 years and haven't missed them but would willingly swap them for hot flushes going away. While taking Tamoxifen I've always followed up any bleeding with my GP in case it's a sign of uterine cancer. Any idea how long I need to worry about that as opposed to just assuming it's a period?
Thanks in advance and hello to any of you who I used to talk to on this forum all those years ago ....
0 -
I am sorry that all of you are having the same problems I am, but it is comforting to know I am not losing my mind!
I stopped AIs 5 weeks ago and I still have bouts of sever depression (but it comes and goes a few hours a day) and I still cannot grasp anything with my hands. Someone at my BC yoga class said "what is the use of oppose able thumbs if you can't use them!" LOL
I am thinking I will ask my MO about Tamoxifen.I have already had my reproductive organs removed due to endometrial cancer during my BC discovery. The fun never ends! Thanks for all of your support/advice!
0 -
Anyone taking cbd oil? Wondering if it interacts with tamoxifen. Heard helps with pain.
0 -
KM47--I've posted before so you might be able to look back but I did 5 years on Tamoxifen then stopped due to my BCI results that showed no benefit from continuing. I had visions of the muscle and joint pain disappearing within a month and the fat just falling off my body as I walked down the street
but that's not at all what happened. Funny enough for me I noticed a big difference in how I felt at about 9 months! My pains went away and I started to lose weight without doing anything different, albeit I was pretty diligent about watching my weight while on Tamoxifen. My MO told me that most of his patients gain on average 40 pounds while doing their 5 years and I was determined not to let that happen, especially when he told me that having a fairly normal BMI will reduce your risk of recurrence by somewhere around 40%! I ended up gaining about 15 pounds but at about 9 months it slowly started to come off and I'm now down about 12 pounds since January. I had a total hysterectomy during my 5 years so I wouldn't know about the periods returning. I can say my hot flashes got better shortly after stopping Tamoxifen, then when everything else started to improve, the hot flashes got worse. Now that I've dropped some weight, they are better. I think that spending 5 years letting that drug wreak havoc on your body means it will take some time to readjust and you just need to be prepared that it won't happen overnight. 0 -
I saw that some of you have dizziness.Mine lasts short time, like 2 minutes when I move sometimes my head. I also think maybe from the change of glasses I'm using my old ones since my original ones are broken... The thing is that I've started tamoxifen on November is it possible to have any SE like dizziness or feeling lightheaded now????
0 -
when you have other issues, it's hard to tell what is from what. Ses can start or end at any time. At first I had frequent warm flushes. Now it's been a year of 3 years that it's not often. I'm the type if I feel there could be benefit then I'll deal with the ses unless it becomes debilitating.
0 -
lala1 - question plz - what exactly is BCI ? I mentioned it to my oncologist yesterday and she had no idea there was a test for Tamoxifen. (I don't like my oncologist- not helpful at all) Thx!
0 -
I have been on Tamoxifen for one year and the main side effects I had in the first month or two have returned with a vengeance in the past month, namely hot flashes and leg/foot cramps. What's up with that? I'll turn 51 in a few weeks so maybe I'm entering real menopause? The hot flashes are occurring 1-2 times at night and again 1-2 during the day, every day. Only my left leg/foot cramps up, which is both strange and unfortunate since I drive a stick shift. *sigh*
0 -
I noticed hot flashes are worse, or more noticeable, in the summer. I have to keep a fan on in my bedroom during the hotter months.
0 -
ReadyAbout I have to agree that my hot flashes increase in the summer months. I use an activcool wrap you can get at sporting goods stores. Also hand held fans. And yes I do get foot cramps as well. Not too sure why.. At night I turn down the air conditioner if I wake up with them at night. In the fall it seems there are less of them.
0 -
Good news from my MO today. end of 4th year follow up all is good. Mammo clear birads 2 (benign condition due to my treatments). AND he is fine if i want to reduce the dosage and will not be keeping me on Tamoxifen after my 5 years is up. AND that my five years would be up in August at the end of five years post treatment, not 5 years from starting the drug so shaves off another 5 months. He suggested because of the half life, that I take it every other day. Ya me
0 -
Molliefish - doing the happy dance for you! Yay you is right!
0 -
That is WONDERFUL news MollieFish!!!! <<<super happy dance for you>>>
0 -
Molliefish, that is awesome.
0 -
Wow, molliefish! Here's hoping for similar news for all of us! Congratulations!!!
0 -
rljes---BCI is the Breast Cancer Index test. It's run when you hit your 5 year mark. Your original tumor sample is tested. It will tell you what your risk for recurrence is for years 5-10 and whether or not you'd benefit from continuing hormone therapy. Google it and take the info to your doctor (although, for me, a doctor who's never heard of this test would concern me),
NoteRed-- The only SEs I had when I started Tamoxifen was the muscle/joint pain that started at about 3 months. All my other SEs didn't show up till 11 months after I started so yeah, I think you can get them anytime.
0 -
An interesting development, not sure what to make of it or maybe it's coincidental.
Used to take my tamox in the morning. At night, in bed, I'd get leg cramps. Pretty much never in the day, but at night.
Then I switched to taking the tamox at bedtime. Not to affect anything but because I took another medication at night and thought it made more sense to take my meds together so I wasn't forgetting one or the other. So the switch was organizational not medical in nature. Now I take my tamox at bedtime.
When do I get leg cramps now? In the morning! When I'm in the bathtub. NOT a good time to get a leg cramp because they always get me off guard, I'm happily washing my hair and the next thing you know I'm screeching and flailing and have shampoo in my eyes. How do you 'walk off' a leg cramp when you're wet, naked and soapy?
So, I am wondering if aprox 12 hours after taking the tamox I have either a dip or rise in the med that triggers leg cramps? But the time I take the pill is new and the morning episodes of leg cramps is also new. I'm not sure what to think about this. Makes me scared to wash my hair!
0 -
Awesome news Molliefish!
I doubt I'll get to 4 or 5 years on tamoxifen.
Just started back on this week after being off 6 weeks, during which time all my SEs, except for an occasional hot flash, went away.
Only taken it since Tuesday and forgot yesterday, but the extreme hot flashes and vag discharge started after the first dose. Waiting to see if the joint and muscle pain returns. If it does, I'm done. I'm turning 68 in 3 days. I'm ok with whatever life the Lord has planned for me, but it's going to be spent without debilitating pain.
0 -
Nancy, have you considered taking less than 20mg every day? Maybe 10 mg? Maybe take a 20 mg pill every other day? Or every third day? Or take a 20 mg this week on Sunday and a 10 mg next Sunday and a 20 mg the Sunday after that?
I see your Oncotype is pretty low and your tumour small and a low grade and stage. That is all positive in your favour.
If you are comfortable quitting altogether - then ALL types of tweaking are available to you, because even taking a 20mg tablet once a week will keep SOME tamoxifen in your system. You are free to get creative with this drug, you are not forced to follow a regimen. Finding your own way to take tamoxifen, rather than quitting completely, might be a reasonable way to allow you some quality of life AND some protection from recurrence. There seems to be a huge black hole in the information of HOW MUCH tamoxifen a body needs in order for it to be effective. In another thread another poster said in a very slyly slid in sentence that that research has been done and the dose was settled on to give the most people the most benefit. Uh...that is wishful thinking as far as I can tell. I LOOKED HARD for trials on different dosages of tamoxifen and never found any (other than the very few, small low dose trials) that explain why 20mg was chosen as the standard dose. As far as I have been able to gather it was settled as the dose that drove the least amount of women completely mad with misery. It was the dose most women would stay on - but not he most effective lowest dose. I found NOTHING that said that.
So before you quit in utter misery, realize that you can take this pill how, when and in what dose you want to see if it makes it more tolerable - because as my oncologist said, some tamoxifen is better than no tamoxifen. Maybe there is a way to get quality of life and peace of mind as well. I awlays hope, anyway.
0
