Bottle o Tamoxifen
Comments
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Bounce - maybe you can let go of some of the anger by considering that you HAD cancer - not that you HAVE it - looking at your Dx I would imagine your likelihood of reoccurance is very low - look on the bright side at least you escaped chemo
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Rerunner, I take my Tamoxifen with all my other vitamins and pills in the morning. I tried at night and before bed and it didn't make any difference.
Yes, I do believe, even mild exercise like casually walking will help the hot flashes and wild mood swings and deep dark anger streaks all thanks to the Tamoxifen. You can take stairs at work rather than the elevator. When shopping, park at the far end and walk, and then your car doesn't get dinged either. Exercise doesn't have to be a hour workout. It can be 5 minutes of dancing to a song you like while at home. Move - I garden a lot and tend my horses on our 8 acres and just being outside helps me.
Actually my GP diagnosed me with SAD: seasonal affective disorder. I need to be out in and see and feel the sun on me for 20 minutes a day, and it has to be before 11am - no hat, no sunblock, no sunglasses. This was a major help to me this last winter, as if the sun was out, in the morning I would wrap up in my robe and have my coffee on the porch steps. It helped and if I missed a few days due to bad weather I still seemed better.
And yes, one person, a nurse in the GP office I go to, that I know socially, said to me after I was initially diagnosed 'you know Deb, it's having a positive attitude that will make the difference'. Well, the receptionist sitting down in front of her made a face as I stood there in shock with tears streaming down my face from another frank discussion with my beloved GP. Welll, Shoot, I tried to be positive. Did it not work? I got mets. And no, I didn't get mets because I had a piss poor attitude. It happened because it happened. Good news is I was on Femara and switched to Tamoxifen since the mets were found in January and they haven't grown or spread and my tumour count has gone from 80 to 30 in 12 weeks on T.
As to the temper, well I think it is two things. We all have been pushed and stressed and prodded enough to last the rest of our lives, and just don't have the energy or desire to put up with waiting or other people's crap. It's partially the T and the rest how we now look at our lives.
Truth being, our lives will never be 'just' like it was before bc. We need to forge a new life and not let this BC rule us and take anything more away from us: so we get mad, our family and friends are going to have to get used to it, we are going to have a different outlook on life - again, all around us will have to adjust. WE are not here to please everyone.
We need to do what we want when we want! That is our right!
oh dear, that was a little rough, wasn't it.
PS; whomever lost their anti-anxiety pills, if you can't find them get some more and put them right next to your Tamoxifen. A little secret: my GP put me on anti-anxiety pills daily about 3 months before the mets were discovered and I felt so much better about myself and life and wasn't so snippy to others and was actually weaning myself off them and was almost there when I found out about the mets. Now I'm pretty much on them routinely but my GP and I say, 'heck, if it give me a better quality of life, so what' and it just helps me enjoy my husband, who doesn't ever deserve my wrath, my faithful dog Jaki and my 16 year old cat Freddie.
Sorry to write so much. My husband always asks me if I am writing a book!0 -
justagirl - that's great news re your tumour count - enjoy your sunshine -0 -
dragonfly, since you mentioned you have allergies to a lot of things, I wonder if a filler in the brand of your tamoxifen might be the culprit. Have you tried different brands to see if you have a different reaction?0 -
Gemini4: I did take one other brand when I first started Tamoxifen-I think it was Mylan but I ended up with joint pain on that too. How many brands are there? Maybe I can try to find another one. Makes sense that additives could be a problem for me.0 -
I'm not sure how many different brands make tamoxifen, but there's a thread (whose exact name I can't recall) here in the hormone therapy section that focuses on the different side effects that people are having with the various brands.
Edited to add link to the thread:0 -
Thanks Gemini4, I'll check out the thread.0 -
Just got my first bottle today. It says Teva Pharmaceuticals.
Anyway, have a question for you all..........just took my first dose. It was suggested by someone that I take it right before bed to help with SE's.
My question is.......how long before I might start experiencing SE's? Also, I struggle with depression/anxiety. I used to be on Lexapro and asked my MO today if I could go back on it. Having a really hard time lately (gee, wonder why). He wants me to go to my fam doc and he would prefer I go on Effexor. Anyone here on it? If so, how does it work for you?
Thanks ladies, have a wonderful rest of the evening!
Kimberly0 -
Hello ladies, I am checking to see if anyone has had tamoxifen cause blood clots in their legs. I am not sure that is my problem, but I have a very hot red sore leg and did not know what else could be causing it.0 -
VLS, is it sore in one place in particular? I don't like the sound of this. I'd try to call someone if I were you.0 -
Vls, ditto to what RunFree said. You should really have that checked out by your PCP or MO. Hope you can call one or the other in the morning. Good luck!0 -
Hi Everyone.
I saw the oncology NP today and was shocked when she told me that she had never heard of sleep problems as being a side effect of Tamoxifen. I said wellll I never had a problem before I started taking this med. Am I crazy here or isn't that a normal side effect?
So she decided I should take some Adivan for a month or so to get me to settle down at night and then start on Effexor for hot flashes as I am HOT especially at night. I have all the heat shut off in my room ( we have some snow) so its quite cold in there and hubby has taken up residence in our daughter who is away at college's room.
Anyone else told to take adivan to sleep for a couple months? I guess she thinks then my hot flashes should be in control.
I also had 12CC of fluid aspired out of my lumpectomy site( they were able to fit me in for an ultra sound). That wasn't the most fun
I also got fitted for a lumphodema sleeve( I hate it already) and a trunk compression tube top.
Tomorrow I will pick up my new meds and see if I can ever get some sleep.0 -
ndgirl, my MO prescribed ativan for me when I saw her last month. i tried it for a week, but saw little change in my inability to sleep through the night. I'm now trying the controlled release melatonin with a slight improvement. I find it so frustrating when docs act like you are the first person ever (!) to have fatigue or insomnia or joint pain, etc. , when the list of side effects on the pharm print out is full of them!
I guess in their zeal to help us prevent recurrence, they say everything they can to keep us on the drug for 5 or 10 years.0 -
7 weeks and my hair is still falling out - I've lost about 1/4 of the volume, my hairline has receded by well over a centimetre and the hairs themselves are growing finer. Having it chopped really short today in the hope it will slow the loss.
I've also started to have hot flashes and nightsweats the last few days. The nights are worst - waking up drenched in sweat, feeling like my face and torso are on fire, then when the heat passes I am absolutely freezing. Then it takes at least an hour to get back to sleep. This happens two or three times a night. I am soooooo tired all the time!
I'm not due to see the ONC again until January and will make a decision by then whether to continue. I have to weigh risk against quality of life.0 -
Iahela,
Today my NP ONC told me that Effexor will help a great deal for night sweats. She is starting me on the lowest dose and I hope that it will help. She says it takes up to two weeks to work. I will pick up my script tomorrow. I am told by friends it helped them a great deal. Maybe you can ask your doctor about being put on that?0 -
My angry phase has been replaced by a very happy phase! For no reason. I think my hormones are just running wild while they get used to the Tamoxifen.
And I am so not sleeping. But here is the thing - the minute I open my eyes I start to question all the treatments I am doing (I should be starting rads soon and I have a million questions and no good way of asking the RO) and questioning how I am feeling on T. I keep getting twinges in my stomach and thinking its uterine problems starting - which I am really scared of. And checking to see if my boobie is still sore/numb/hard etc. So its no wonder I can't sleep. I think if I could turn my mind to something else besides myself I might just be able to go to sleep.
For a person who didn't think a lot about themselves before I have become quite self absorbed. Maybe its a leap of faith to say - "Heck - I have done as much thinking as I want to. From now on let the docs worry about me." Let my MO and RO lie awake at night. I am going to sleep. Tonight I am going to try a new approach. If I wake up I am going to try to feel like a fluffy little animal snuggling in its nest - peaceful and safe. If I can concentrate enough on that safe feeling I might just go back to sleep. I am going to give it a try.
Hugs to all.0 -
ndgrrl - that might be worth trying. Let me know if it helps you? I know everything works slightly differently for different people, but I'm hoping for encouragement. I spent from 17 to 32 years of age on antidepressants then no longer needed them after I had my second baby - I guess my hormones sorted themselves out - and I would really rather not have to go down that road again, but if it really does help the night sweats I might consider it.0 -
Hi there Nocompromises2013
Thanks for posting back - You gave me a lot to think about.
I have to tell you that I read your posting 2 minutes before I left home this morning for work and I almost exploded in rage at first! But hang in there and keep reading as I am now in an insanely happy Tamoxifen mood. Anyone want to take bets on what I will be like tomorrow?
So - my first reaction to your suggestion that I think of myself as having HAD cancer, rather than as HAVING cancer was - O sure, that's why I have to do radiation and take Tamoxifen for 10 years! Like I ever had to take antibiotics after I had an infection or I ever had to stop the bleeding after the wound had healed up. (Sarcasm as well as cancer run in my family.)
Now please continue reading without taking offense because this morning's Bounce was bad-mood Bounce and even I don't like her.
Next you mentioned that from my diagnosis you thought that my likelihood of recurrence was very low - and that I should be happy that I missed chemo. So all the way to work I fumed on the bus wanting to say - O sure - for the next 5 or 10 years I may be OK according to the stats - but that takes me to 58 years young. What about after that? 20% - 30% percent of early diagnosed cancers develop into mets. (It turns out no-one is sure about these figures because this is a statistic that no-one collects data on. WHY?) And I only discovered that from reading on this website. None of my doctors ever mentioned it.
I have thought a lot about what it will be like for my family to watch me get ill and die. I know there can be a lot of time between the two but that is a dark place I go to sometimes when I can't stop myself. Its like poking your tongue in the place where your tooth used to be. You know you shouldn't do it but you do.
My Oncotype score puts me in the grey zone of there not being a clear benefit to doing chemo. My MO didn't think there was any benefit to it and didn't offer me the choice to do it or not. Yes - I am grateful that I dodged that bullet but I know from this web site that many ladies with Oncotype scores even lower than mine still did chemo by choice. As I am not an oncologist I can't tell from their diagnosis why they chose to do it. And I am sure if I asked another 2 MO's one would say to do the chemo!
So its not like I feel safe. I don't. I don't think I have any reason to think cancer wont be back some time.
I think I must almost have had smoke coming out my ears. :-) Luckily I don't have a long ride to work so I couldn't fume for too long. I had to get off the bus and actually start working. And about 3 hours later I suddenly realized that I was feeling very very Bouncy (happy) and that I hadn't thought about anything cancer related for 3 hours.
That's when I realized that I have to make a plan to ask my doctors all the questions I want to about my rads and about the statistics out there and then just accept some of the answers and do the treatments with a calm mind.
Its also when I realized what you might have been trying to tell me - get over yourself - forget about it - carry on. You didn't say how to do it. You just said to do it.
You are right. Thank you.
justagirl - "Black" Bounce was so pissed off this morning that I only really read your post now and you are spot on. Every word you wrote rang true. Amazing post - again - thank you.
We can't stop the waves but we can learn to surf.
Crazy Bounce has decided to try to relearn to hoola-hoop! Not a pretty sight.0 -
Bounce: I have similar stats...twice.....one was exactly 1 cm the other .8mm.....grade 1 and grade 3. I was advised not to do chemo for either and wasn't offered oncotypeDX. I take my tamoxifen now (didn't the first time) and having lost friends over the past year to heart attacks and cancer (various), all in their 60's and 50's......what becomes apparent is there are no guarantees for tomorrow, so live today. Your prognostic factors are great. You are new to this as well, and will go through the roller coaster of emotions as we all do and will do in the future because we got smacked upside the head. But we did get a second chance (I got two second chances) so I run with that. Don't beat yourself up for getting mad, sad, or even glad. It is perfectly normal. Don't let cancer steal another moment!!! Be well! PS...didn't do chemo or rads either. Double mastectomy.0 -
Did you do rads after the first diagnosis?0 -
lahela - Have you tried taking Biotin 5000mcg or 10,000mcg for the hair loss? Although it is a supplement, it has helped me tremendously. In fact, my hair is thicker now that it was before BC.
VLS - I would have the leg problems checked out as soon as possible. This doesn't sound good. Please let us know what you find out.
Effexor does help with a number of issues including hot flashes, night sweats and sleep. Unfortunately, that is one medication I could not handle. I really don't have that much of a problem with the flashes or sweats. Now, sleep on the other hand is another topic. Sleep deprivation has become a way of life for me. Some nights I actually do get sleep - like last night. I cherish those times. 2 years, 3 months and 11 days left on Tamoxifen but who is counting??!!0 -
Hey Bounce, Sarcasm may run in your family, but now that you have joined a family you never wanted to be in - the 'BC' family - hold on for the ride.
This is one disease that successfully messes with your mind, body and soul. It physically and mentally warps your image of yourself and very often drops you into the valley of doubt, fear and gloom. I take it to a rollercoaster ride - and I hate rollercoasters!
The only way you have any chance of winning is taking control of yourself, but at the same time allowing yourself to be. If your mood is sad, be sad, if happy - go for it, if insightful - write it down and ask the medical experts.
None of us know what will happen a few years down the way. I wasted 2 1/2 years of my life worrying about BC, then my lovely GP put me on an anti-anxiety pill which gave me the ability to live my life again.
Then about 4 months later, SMACK, I find out I have lung mets. Sure, I cried in the doctor's office when she told me. We both cried and hugged. Then I wiped my eyes, asked for another prescription of anti-anxiety pills and marched my ass out of that office not crying. Drove home, told my husband and 19 year old son and still no more crying. I did cry before I fell asleep that night. So the worst has happened to me, and you know what, luckily, so far, nothing has changed except they put me on Tamoxifen instead of Femara, and my 100's of tiny tiny lung mets are still there and CT's for my whole body show the rest of me clear and my tumour count has gone from 80 to 30.
It's easier said than done, but we all should embrace life. Yes, we are entitled to worry, but be smart. Write yourself a note about what concerns you, call and make an appointment to see your Dr. For many, BC will never cross the threshold into your body again, and if like me, it does, well, I'm in charge of me, and I choose to be happy. That's not to say I don't have down times but I mope and weep, have a nap, snap at my husband, and I'll back to getting on with my life.
Don't let Tamoxifen rule your life. Listen to these helpful ideas, try some and let go. And this Tamoxifen must be powerful stuff, as the Femara allowed the BC to give me mets but Tamoxifen is keeping them at bay.0 -
Boing ..... I mean Bounce ... Am sure we can have fun bouncing off each other ))))
Firstly let me say I was very reticent to post to you as I did, I was afraid you might start bouncing off the walls, I am glad the good bounce eventually saw the positive in what I was trying to say. Please don't fume....
. I wasnt even trying to say get over yourself but merely to point out that right now, in 'theory' you should be cancer free and getting your mindset there ..... many ladies are far more eloquent than moi and blue pearl and justagirl have reinforced far better than me what I was trying to convey
At 50 I would also like to think that I have a lot more than 5-10 years
At the risk of being shot down again- you asked how to get that +ve mindset ? I don't know the answer to that one - sometimes I think it is part of ones intuitive make-up. After many many good and bad life experiences for myself I would say I am not someone who is naturally prone to depression in any way shape or form unlike my H and I see the different ways that he automatically sees the worst where I ( subconsciously) always see the glass half full - I guess I try and look for the +ve and gloss over the bad. He reckons I am in denial but I suspect 5 months post Dx if I was going to breakdown majorly I would have by now - I hope so
I have to dash now. Will try to write more next time.
I do like both bounces thou)))).0 -
Bounce,
I echo your thoughts in my mind every time I have a moment to myself to think. Everyone in my life is telling me to let it go, you're fine now. Not to worry, to stop worrying. Don't understand what I'm fretting over...........blah, blah, blah
I see you were diagnosed Aug. 5, I was diagnosed Aug. 8. This is still VERY, VERY fresh for us. I don't care what anybody says..........I am still scared out of my mind that it's going to come back......never mind my odds of recurrence! They don't completely understand breast cancer yet...................and to top it off, when I asked what would happen if it DID come back? The answer I received, "It will be WICKED BAD". Oh, but I only have a 10% chance of THAT!
They gave me my options and told me things I NEED to do. I did everything they wanted or let me choose to do. For me, for my husband, for my 6 kids and 2 grand babies. If chemo had been offered, I would have done it.........I am at the mercy of doctors who are still learning..............as are we all. HATE THAT with a passion!
I am going to take this Tamoxifen for the next 10 years and just TRUST God. Trust that HE brought me to the right people......
Kimberly0 -
I understand what Taque and Bounce are saying.
I can undestand each and everything they both say. Its like we are on a roller coaster and we are trying to trust people we may just have met with our lives and things have been forgotten( in my case) which I learn later and then I freak out. The waiting is just the worst. Tonight a friend of mine asked me if cancer still scared me- I said yes it won't ever stop scaring me. It is again fresh in my mind when I was told I have a cyst that has to be ultra sounded every 6 months. I didn't know about it but it was there when they did my first biopsy. They forgot to mention it. So what choice do I have but trust the doctor to watch it for me. Cancer will always scare me- it took from me my grandfather. my mother, my sister who was my very age when she died and my 3 yr old neice.. To be told I had it myself is not something I ever wanted to hear.. Right now I keep waiting and hoping that I will wake up out of this nightmare and I will be ok..
I go back to work next week and not really looking forward to it because my boss has not been understanding at all. But i need to be with people. I just hope people can just hug me and not tell me about their family members cancer took or that I should have did this or should have did that. I have been practially a hermit as I could not handle those comments anymore. I need to trust my doctors and technology today is not the same as it was years ago. I have a friend whos BC came back and she is now stage 4. She was also stage one 5.5 yrs ago. I do not know how to offer her support and it scares the living daylights out of me that that could be me. So when people ask me if I am still scared of cancer. What can I say but YES!!
Anyone else get really weepy on Tamoxifen? or maybe its just my night. I am now the weepy girl. But one thing at least the crabby girl left for a bit- ha0 -
well I spoke with Jeannie from the breast center in NOLA where I had my reconstruction done, and Dr. Strolier (I think that's how it's spelled) advise NO physical therapy until I see an Orthopedic dr. He stated this could inflammation cause by Tamoxifen and stated they might just try a cortisone shot in the shoulder joint. I did have the X-ray taken and found I have surgical clips on the right axilla, probably on the left too since I had a bilateral mastectomy.0 -
ndgrrl, how awful that you've lost so many people to cancer! A little girl and a sister your age, holy moly, plus your mother plus your grandfather, really terrible. There's very little cancer in my family so I really didn't see this coming--I guess it's hideous news no matter where you start from, in different ways. But if you have a picture of losing people from cancer, that's something I don't have to deal with. I did find an effective remedy for people telling me scary cancer stories. As soon as I mentioned my cancer, before they said anything, I would put my hand up right in front of people's faces and said, "I am collecting happy cancer stories!" It was a little pushy, but it worked--people started telling me about their friends who are long-time survivors, etc. I also said in church when I got up to tell them about my diagnosis, "If you tell me my odds of surviving this are less than 100%, I'm going to put my fingers in my ears and say 'la la la'!" That helped send a message about how I wanted to be spoken to. I think if someone had persisted, I would have said, "No, really, stop right there, I can't hear that story right now." Maybe something like this will work for you. My husband did get buttonholed once by someone with a very sad story, but he's nicer than I am. I'm sure cancer will always scare you, and me too. To my great relief, though, I find I'm much braver now that I know more about my own situation. I hope you find the same. As for your friend who was stage 1 and then got mets, I desperately hate hearing stories like that, as we all do. Still, it's not common, and there may have been something in her case that is different from yours. Or she just got extremely unlucky, but that doesn't mean you will or I will.
My worst sustained time so far, emotionally, started a few weeks after I finished rads. I was so emotional and terrified and dramatic. It went on for a few weeks. As I think I've said on this thread before, I'm grateful that I hadn't started Tamoxifen yet so I couldn't blame the pill. I started looking into it and found it's very common to have a really low phase after active treatment ends. So your blues might be from Tamoxifen but they could also partly be that. Anyway I'm rooting for you, physically and emotionally. And for us all.0 -
awee- TY so much RunFree
I am still weepy woman- Grump Ass has left for a bit. I went up town and nearly cried when people were asking me how I was doing as they had not seen me in so long. ( I was being a hermit to avoid nosey people who kept asking me personal questions such as " You gonna cut them off?") I had to become hermit as a way to deal.
On a good note- Boss called me today and we had a decent conversation That helped me a great deal.
I also treated myself to a sandwich at the bakery.. yummm. I have been loseing weight so this was a nice treat. One thing about Tamo- my appetite has been very down where I forget to eat. But I could stand to lose many pounds so I take that as a bonus
I have yet to start my Effexor as I am scared of it... Maybe it will help me with the weepies as well as the hot flashes IDK
I did go get some Melatonin and I hope that will help.
Gentle hugs all around.0 -
Ndgirl, best of luck to you as you re-enter work. I'm glad for you that you had a decent conversation with your boss before returning.
Runfree, loved your clever ways to set limits with folks who have no clue what we have/are going through. Sadly, cancer scares everyone, so people can often say exactly the wrong thing in an attempt to deal with their own anxiety and loss for words. As a clinician, I always remember one of my early mentors teaching us....when in doubt, DON'T! She was referring to us as new therapists trying to respond therapeutically to clients...and likely saying too much.
Years later, a neighbor lost a 19 year old daughter to cancer, and I always recall her telling us how difficult it was to listen to platitudes and other not so empathic statements from people who see her for the first time after her daughter's death. She also did not want to have it brought up at work in ways that left her feeling even more vulnerable and unable to do her job. She said, I just wish people would look at me and say,....."It's so good to see you and have you back with us!"
Ndgirl, I hope you get a few of those when you return. I also hope that you can pace yourself with work. Your body (and mind!) has been through a lot over the past few months. Hopefully, the effexor and/or melatonin will help you get some much needed rest. Good luck!0 -
I've had the same low-appetite side effect on Tamoxifen, though it's off and on. I love it! I CANNOT believe someone would ask "You gonna cut them off?"--that's really barbaric! I'm so glad you had a better conversation with your boss. That has to be helpful in thinking about going back to work soon. These days I do best when I'm at work. It feels like such a privilege just to go to the office and put in a solid day. Glad you got some melatonin. Is it the CR kind?0
