Bottle o Tamoxifen
Comments
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Dear blackcat2012 - funny you should say that!
In 2012 I became the owner of ..... wait for it ...... a black cat! Guess what? She keeps me up at night. Seriously. Stop laughing you all!!!
Every night its the same thing - she scratches - more like digs - at doors. So if we open the doors she scratches on cupboard doors. Let her into the cupboards and she scratches on the back interior panel. Once I am up she goes off to sleep in a quiet spot. I go back to bed. She gets up and digs.
Its not a problem of her making marks - she doesn't claw the doors - its a problem of the noise waking everyone up.
OK - send in all suggestions - I have tried everything - keeping her nails short, playing with her before bedtime (she is a rescue cat and doesn't much like playing with people or toys). Ignoring her, etc. the list goes on and on. Bottom line is since kitty arrived I don't sleep! So now I can have Tamoxifen to help keep me up with kitty at 2 in the morning!
I keep thinking to myself that the cat gave me cancer and will probably kill me! And stop laughing!!!!! :-)0 -
Give the cat the Melatonin! And then YOU go sleep outdoors!
You guys, I took Melatonin while on Tamoxifen for awhile too..... but for ME, it caused the Tiajuana trots! I didn't connect the two, but after 2 weeks of this, I started taking like 4-5 Immodium AD a DAY!!!
So THEN I thought I would go nuts, but I figured out, this didn't start, until I started the Melatonin, so I quit THAT, and then I was back to normal.... well, as normal as I can be!0 -
My MO said Benadryl does not have toxic interaction ... may just reduce effectiveness if taken every day. Seafood allergy here too. If the choice is breathing ... well ... won't have to worry about Tamoxifen if I can't.
My sleep has improved after about 20 months on Tamoxifen .... get 4-5 hrs now, before sometimes as little as 1 hr. Quality is still poor, but getting a little more quantity. Sleeping aids, including pills, didn't help me. I almost gave up on Tami ... but there is hope for improvement, not necessarily like it was before.
Gyn can be your friend on this journey. I had many, many ovarian cysts and bad bleeding issues after starting tami. Set up a relationship now and at least you will have a baseline and also can relieve some worries.0 -
Sleep?? What in the heck is that?? Melatonin doesn't help one bit. What I would do for a good night sleep. I've been sleep deprived for almost 3 years - yikes.
Bounce - You crack me up. I needed a good laugh today. How about trying putting kitty in a cat carrier at night and see what happens. That would solve the scratching issues.0 -
Bounce - have you tried a new scratching post with cat nip spray sprayed on it? Poor thing you! LOL! I too have rescue cats that drive me crazy.
Any post menopausal ladies out there that have had good luck with tamoxifen after bad luck with AIs? I am thinking tamoxifen might be my next choice when I see my MO this week. Femara is toxic in my body.0 -
BayouBabe - I am post menopausal and had terrible luck with the AIs. Tried both Arimidex and Femara. Femara being the worst. So Tamox it is. Been on it since Jan 2011 and have been plagued with multiple uterine issues which eventually lead to needing a hysterectomy a few months ago. I'm sure my case is rare and I don't want to scare you. I have to tell you that other than the uterine issues I have had had very mild SEs - a few hot flashes, and some sleep problems but both are doable.0 -
Hi Ladies - nothing in the below post has to do with Tamoxifen so skip over it if you like -
Jo1955 - I loved the picture.
For 22 hours of the day or night kitty - who is a cat called Fluffkins - does nothing but sleep with an occassional bite to eat.
Its very hard to wake her up unless you try to clip her nails. At that point she instantly wakes up and runs under a bed or takes some other stealthy evasive action.
There are only 2 (though it can stretch to 3 or 4) hours out of every 24 when Fluffkins' attitude changes and she is awake and ready for action. She prowls about the apartment (she can't go outside at all) looking for items of interest to smack about and chase. But she has short bursts of energy followed by little rests followed by short bursts.
I try to leave a few scattered items for her to find and play with. She is soooooo cute. Once she has finished batting a little ball of rolled up paper (or hair scrunchy) about she will carry it to her food dish and deposit it there - never to touch it again for the night.
At some point she will have dropped all the little toys into her food dish and then comes looking for a human to redistribute them. Let the scratching begin.
I don't think its doable to keep her locked in a cat carrier at that time. It would be like putting an athlete in a straitjacket.
What does help is trying to keep her awake and moving between 21:00 to 23:00 say - then she will sleep later - but its hard to do because I don't want to spend that time playing with her every night. Its a bit much. Because she doesn't like playing with people and only tolerates our love and petting a small amount before she nips us gently its hard to make her play when she doesn't want to.
I am hopeful that as the weather gets colder Fluffkins will be less inclined to roam at night and more inclined to come sleep on me. In winter she thinks I am a good souce of heat and will often sit or sleep on me - as long as I don't try to pet her! Do I even need to mention here that its not very comfortable to have a cat sleep on you for a long time? :-)
I am waiting to see if she is impressed by one of my Tamoxifen hot flushes!
And despite being almost useless as a pet she is still loved and adored by the entire family. As soon as anyone comes home - first question is always "Where's Fluffkins" and then a smile breaks out across the kid/other kid/mother's/husband's face as they manage to give her a pet before she runs away like they are the devil.
[By the way she ignores store bought cat toys! Only goes for paper balls, hair scrunchies and big plastic zip ties. She used to play with straws and strings but lost interest in them. Occassionaly a fly gets into the apartment and then she spends a really long time chasing the poor thing about before he either gets eaten or escapes.]
Hope everyone has had enough sleep and has a happy Sunday.0 -
Hi Ladies
I am new to this thread, and took my first T last night - 20hrs later so far so good - hopefully I will be one of the lucky ones - chemo pushed me into immediate menopause and apart from occasional very minor warm flushes I have come thru pretty easily
I have only got as far as page 3 catching up on this thread so plenty of bedtime reading ahead of me - 700+ pages on one little drug .......really??
but great to see posters from 2007 still here and posting
Look forward to getting to know you all and learning more about the big T.
NC xx0 -
Bounce, I just cracked up when I read your post! THAT was really funny, reading about the exploits of your cat! Ha! One of my Daughter's cats in Orlando, will always bring her home "treasures" every night! He scours the neighborhood, looking for tid-bits that he thinks his Mom will love! Old chip-packages, sacks from who knows where, gum wrappers, etc! She takes pictures of all his little offerings, and sends them to me!
There is that one video of someones cat, that steals stuff from the neighborhood! They have a video of his night-time runs! Socks, bathing suits, underwear, just ANYthing he can manage, he brings home! I love those stories.
So NC, just hang on for the ride! You'll have lots of SE's maybe, but they usually go away, in time for new ones to come along! The most troublesome were the leg cramps for me, and the "warm flushes".... But just try and hang in there. And I DREAMED all the time.... (mostly while sleeping)..... That's if you ever get to sleep! Ha!0 -
Bounce...
I like your idea chevyboy...0 -
Hi all, I've got a Tamoxifen question. My BS said I would need to be on hormone therapy but I am questioning that. I had a hysterectomy almost 2 years ago (total). My OBGYN stupidly put me on estrogen for horrible hot flashes. Skip to August 2013 when I was diagnosed with BC, I believe from taking the estrogen. I have been off of it since the end of July. My question ~ I have no ovaries to produce estrogen and am not taking oral estrogen, so why would I need hormone treatment to rid my body of estrogen when there is none being produced? Am I being naive about this? I am close to 3 weeks post NS BIL MX with TEs. Negative nodes.0 -
Cheryl, It is not just the overies that produce estrogen. I know fat cells do and there could be others. I'm more than twenty years post menopause and am on tamoxifen. They also give it to men with breast cancer.
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Lots has been written about this - no ovaries does not mean no estrogen. The body is way more complicated than that.
Even skinny, elderly ladies who have not had their ovaries for years get ER+ BC.
Sorry to be quoting from Wikipedia (not the most reliable source sometimes) but it was the quickest thing I could find:
"Some estrogens are also produced in smaller amounts by other tissues such as the liver, adrenal glands, and the breasts. These secondary sources of estrogens are especially important in postmenopausal women. Fat cells produce estrogen as well."0 -
Cheryl, Just because you had a double mastectomy doesn't mean your surgeon got all the breast tissue. Like Bounce and some of the others have said, there are other sources of estrogen production in the body. I am also postmenopausal and am on Tamoxifen. I recently had to have a complete hysterectomy because of Tamoxifen and had to unfortunately keep my ovaries - they have fused to my bladder. Look at it this way, taking Tamoxifen is just another way to keep the BC beast in check.0 -
Wow, didn't know about the fat cells producing estrogen.............I'm in trouble. I'm about 50 lbs overweight
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I was having horrible leg cramps from Tamoxifen. I think because of the hot flashes it depletes you of important electrolytes (just my theory) anyways I started drinking about 8 ounces of tonic water and juice(usually cranberry) and they have almost completely gone away. If I forget for a couple days the cramps come back with a vengence. Hope this helps.0 -
rds, that is fascinating! I have been having awful itching and rashes for nearly three months now, probably a rare side effect of Tamoxifen. I wonder if there's some simple remedy like that for this symptom? Anyone have any ideas?0 -
rds - that's a great idea for leg cramps! My left leg and foot seem to be especially susceptible, day or night. I can be putting on my tennis shoes and just because I arched my foot it can cramp. Or stretching in bed when I first wake up - zing! A cramp grabs my calf.
RunFree - I can't think of anything for a skin rash. Those are so frustrating - doctors act like they're incurable or something! Have you been tested for allergies?
Jo - my pharmacy said their supplier is having a hard time getting Teva brand Tamoxifen and I was wondering if you've heard the same thing. I had to give up the Mylan, which was great for me. And Teva is better than Watson for me. I'll hate it if Watson becomes the only brand. Why the shortage of Tamoxifen all of a sudden? I never did find out why Mylan "temporarily" quit making it...0 -
Wow my hot flashes have turned it up several notches. It's about 38 out & I'm sleeping with the window open & a fan on. This is ridiculous0 -
Hi Ladies
Has anyone noticed if Tamoxifen symptoms are less on days when you exercise?
On the day of my simulation I did not have time to exercise and by the evening I was very emotional - both angry and sad - but I thought it was from the simulation.
Then the next day I was even worse - I felt like I was having a nervous breakdown. I did not exercise. I just kept wanting to cry. Then it struck me that is how I used to feel when I was young and had bad PMS. I thought perhaps the Tamoxifen was messing with my emotions.
This morning I woke up early feeling MISERABLE again - but then I pulled on my big girl panties and rode 15 minutes on my exercise bike [which until now has been used mainly to hang washing on :-)]. A bit of sweating and a quick shower and I was off to work feeling like new.
All gone misery. I still think cancer sucks but I am coping again. All that from 15 minutes of exercise?
So - has anyone else noticed a change in side effects on days when you exercise?
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Yes! Exercise does help me and for you Bounce, that 15 minutes was the best gift you could of given yourself today.
The days I don't want to get out of bed and hide under the covers, and literally do that sometimes, finally I tell myself to get myself together, put on some shorts and a running bra, shoes, and hop on my treadmill. Yes, sometimes I only do 3km - sometimes 10km, but the 3 km is as good as the 10 on my bad days, which enable me to stay up and moving during the day. On days I feel good and do more, I even feel better. Now, if only I could sleep.
Tamoxifen has screwed me up totally on sleeping. Can't fall asleep, can't stay asleep. Hot flashes so bad I have to get up and change my shorts and tank top. It's spring here, so I already have the bedroom windows wide open (and we have lots of large windows) and I can sleep even without a sheet on me and my poor hubby is huddled under a quilt and blanket!
and I have defeated every sleeping pill and combination of pills there is - trust me, I'm a nurse.0 -
Bounce i have exercise is the only thing that keeps me from killing someone ..lol.. seriously though i find the days i dont my mood is horrid and physically i feel ten times worse. Right now i only take one day off running and even then i walk the dog that day. my sleep is really messed too. ive lost a ton of weight though which would be good if i needed to lose it but right now im desperately trying to hang on to the bmi by a finger.Justagirl when do you take your tamoxifen ? i take mine right at bed time but thinking of switching it to morning to see if it makes a difference to sleep.0 -
So exercise saves the day. I used to hate exercise. I always said I was allergic to sweating. I guess I am going to have to get used to it or pay the price.
Another side effect of Tamoxifen (or perhaps its just cancer in general) is that I have no patience left with anyone. Not my poor husband or my boss or my nocturnal cat - but especially not for waiting in line! I know its infantile but I keep wanting to say very loudly - I have cancer - let me go to the front of the line, pay for my purchases and go home! My time is precious. I don't want to waste it waiting.
Now I know that the person in front of me may be even worse off than me and even if they aren't I don't really expect the world to cater to my every whim. Though it would be nice. :-)
I just remembered - I really don't have patience for people who ask me how I am in hushed tones as if I am about to drop dead instantly - and then spend the next 20 minutes telling me about their problems.
People keep saying that this could be an opportunity for me to reevaluate my life and do something really worthwhile. I am going to tell the next person who suggests that to me that I was very happy with my old life and would be quite happy to have it back right now. How rude! I am going to tell them they will be lucky if I don't turn into an ogre and rip their arms off - let alone do something wonderful with my life.
It's like saying all you need to beat cancer is a good attitude. And 10 years of Tamoxifen.
I think the Tamoxifen threw me into the "Anger" phase. - I am going to go Google what phase I should have been in before that and what I can look forward to next.
I actually keep feeling like a fly on the wall looking down at this odd angry version of my old calm self and thinking O my gosh - what are we going to do with her and how do we get the old one back? Its a bit amusing that I can be so cross and grumpy about everything.
This is hysterical - yesterday evening I thought I was going to snap so I decided that I was going to take a tranquilizer - which I had asked the doctor for before my biopsy (but stupidly didn't use it then).
I know I put them in a particular draw. I looked and looked but couldn't find them. Imagine half crazy lady looking frantically for happy tablets with no luck! Some very unladylike words were escaping me! I must remember to look for them some day when I am calm.
Well - bless you ladies - Thanks for listening. I have vented away like Old Faithful and feel better already.
It never ceases to amaze me that we are scattered all over the world - when I am going to sleep - one of you is waking up somewhere. We are living through all the seasons together at the same time, sharing our problems and our solutions and just generally being there for one another.
Hugs to all0 -
Bounce,
We are so >> << You hit the nail on the head. It's the Anger Phase!! Yes that's it. I'm frustrated, aggravated, depress etc. No patience at all. I sometimes feel like I'm screaming in my head at the everyday bs0 -
Since I've been on Tamoxifen the Mylan brand I have always had bone and joint pain I do take glucosamine and chondritin for this. However several months back they gave me Watson brand tamoxifen (I'm since back on the Mylan brand but don't know for how long) and since being on the Watson my right shoulder and arm is just killing me. When I move it in certain ways I would almost swear it's broken, it's not though. Doctor has sent me for X-ray all fine insurance company said X-ray and physical therapy before MRI. Any other suggestion? Has anyone here had the experience?
And I totally agree about the whole Anger Phase, then I have the I sorry I'm a pest Phase. It sure has been an interesting 2 years!0 -
mstrouble16: I've been on Tamoxifen (Watson brand) for 2 years, 1 month so far and I've had several lengthy episodes of horrible joint pain. The first six months on it were awful. I had shoulder, lower back and hip pain that hurt all the time and woke me up at night. At one point I couldn't move my right arm, had an impingement and thought I had a torn rotator cuff (I didn't-it was just Tamox effects). After several scans ruled out cancer I was sent to months of physical therapy which did not help at all and accupuncture which did not reduce the pain either.
In desperation I went to a rheumatologist who told me that he believed my body was just overwhelmed with inflammation as a side effect of Tamox. He put me on prednisone (steroid) for one week and it was amazing! It zapped the joint pain and I had lasting relief for approximately one year. The last few months the joint pain has been building again and this time it's in both shoulders, my neck and my upper back. My onc sent me for a bone scan which was clean and has put me on prednisone for a week in hopes that it will have the same effect it did last time (will let you know if it works again-just started it).
It's hard to imagine going through this for another 3 years. Tamoxifen joint pain is no joke! Maybe you can try a short tapering does of a steroid to see if it works for you too?0 -
dragonfly1 - thanks for the info.
Do you (or anyone else out there) know why Tamoxifen causes inflammation?
I thought inflammation was one of the contributing factors to developing cancer.
Am puzzled.0 -
dragonfly, they had me on Meloxicam but it didn't work well with my high blood pressure medicine. The blood pressure medicine is a diuretic and the Meloxicam had the reverse effect needless to say I felt like a watermelon ready to explode! But I will ask about prednisone0 -
heartnsoul - I have no idea why Mylan stopped making Tamox. If it works for you, I hope you can get it again. I have been on Teva brand since the beginning and I have had very few side effects. No joint pain, very mild hot flashes. I am sleep deprived but I can't totally blame that on Tamoxifen. I have had sleep issues for many years.0 -
mstrouble16: Prednisone might be a problem because you have high blood pressure-ask to be sure. It makes me completely manic when I'm on it but it has been very effective. Taking it once a year may be the only way I can cope with staying on Tamox for the full 5 years.
I've never been able to get a good answer about why Tamoxifen causes such bad joint pain/inflammation in some people. The rheumatologist initially wondered if I had some kind of auto-immune disorder that occured when my body "re-set" after chemo. Multiple lab tests and scans ruled that out and we were back to Tamoxifen being the culprit by process of elimination.
Bounce: I don't think the doctors know exactly why Tamoxifen causes this. It's all speculation but I also worry about the inflammatory process and how it may factor into cancer/recurrence. Interestingly, I have also always had severe allergies to all sorts of environmental things-pollen, grass, mold and even metals-another inflammatory process. Seems like my body is constantly in inflammatory overload and it makes me wonder about the connection to cancer.
I'm trying to decide on the lesser of the evils at this point. I'm 44 and pre-menopausal so the onc tells me that the Tamox is even more crucial in preventing recurrence. So it's Tamoxifen and the joint pain roller coaster vs. no Tamoxifen and higher risk of recurrence. My onc values quality of life and says he will support me in any decision I make. He just wants me to stay on it as long as I can stand it.0
