Tamoxifen for gals who have not had chemo
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KAK, hugs to you too. Love your new artwork. London is cold but sunny. I have lived long enough to have seen the previous financial crises and hope to live long enough to see this one out. I don't know what has got into me tonight. In my everyday life I am quite upbeat. Honest.
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I have been on Tamoxifen for 9 months now and until recently had hot flashes / night sweats, weight gain and some difficulty sleeping. Now I find I seem to be developing an arthritis type condition. Hip joints sometimes stiff when they never were before, and more obvious, pinky fingers looking a little deformed and sore. I've googled tamox & arthritis and found a site where others are saying the same thing: http://www.imaginis.com/548private/ubb/Forum1/HTML/000513.html.0
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Karen,
My pinky has been acting up the last 2 weeks as well (been on tamox for 4weeks). My onc tells me one of the SEs of AIs is joint or muscle pain, but not necessarily with tamox. I guess this is one of those things we know about, but hasn't been scientifically proven, so doesn't make it in the literature. I had some Naproxen left over, and she said that was fine. It helps some with the swelling and stiffness, but it's still there. As long as it stays to this level, I'm ok with it, considering....
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I just started Tamoxifen last week, and I was wondering how soon y'all began to experience any side effects? I have a vague headache that comes and goes - sort of the ghost of the types of migraines I'd get on my off weeks with BCP's, but not really worthy of meds. I also am feeling tired and sleeping really well - which could just be delayed fatigue from the radiation treatment and two out-of-state trips I took prior to starting the Tamoxifen. And if anything, I keep getting COLD, vs experiencing hot flashes. But I can't help but feel that I'm bound to be assaulted by vicious menopausal symptoms at any moment (I'm 45 and pre-menopausal going into this part of the treatment).
Interestingly, in the five months from diagnosis to the present time, I have noticed things that are listed as side effects of Tamoxifen, but I wasn't taking it yet. Slightly dry eyes, drier facial skin, joint stiffness in the morning, a bit of negative moodiness. Probably just my body adjusting after the years of BCP's, I guess, but if the timing was different I'd totally have assumed it was due to the Tamoxifen, had I already been taking it...
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Kleenex,
I've been on Tamox since Sept. 10 of this year. I used to wake up hot, it lasted for a couple of weeks (every night). Now I only wake up hot once in a while. I'm tolerating Tamox pretty good---thank goodness. Instead of taking the full 20mg, I've continued taking 10mg in the morning and 10mg at night.
Hope your se's get better.
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Kleenex,
My "se's" started about 2 weeks after I started my tamox. I've been on tamox since October of 2007 and I must say that the only menopausal se's I've had were hot flushes (not even a flash!) and a few night sweats that went away after a couple of months. I was still tired after rads too, as I started tamox 2 weeks after completing rads (26 reg & 9 boosts).
Take care!
Trish
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NenaH said: "Thank you all. LisaAlissa I typed CA15.3 in the second search engine you mention and the only posting that came up was my own.
NenaH,
I don't know why you're having trouble.
I've tried it again, with the same results. So I thought I'd post an image showing the serach form & results I got using this search page: http://community.breastcancer.org/posts/search The image below shows what I filled in--and what I got back. I can't think why you wouldn't get the same result.
But maybe you can. You'll notice that your post is the first (most recent) returned result when I ran the search again.
Maybe you can see why your results aren't the same?
HTH,
LisaAlissa
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Thank you LisaAlissa. It must have been my Tamoxed brain as I stupidly typed in my name in 'Member Name'. Duh.
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Kleenex, hey girl! I am starting Tamox when I get back from vacation. I started Effexor last week to help wtih some SE's and a bit of stress I have been putting on myself. I think the Effexor and vacation will help. My onc said that being on the Effexor when I start the Tamox should be helpful too. My age of 38 should also be an advantage too minimizing SE risks. BUT lets talk after I actually start it! :-) The Effexor seems to have only given me a few days of weird se's very very minimal but noticeable. Now I don't notice anything different. Doc said anyday now I should notice a calming of sorts. about 2 weeks he says and 6 for full effect.
Well, I will be in touch when I get back and start...
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Thank you for your replies regarding side effect onset! I am now almost two weeks out, still with not much to speak of, except for that feeling that at any minute the thermostat is going to freak out... we shall see!
2NewBoobs - What is the philosophy behind splitting the dose? Does this decrease possible flash activity? Do you cut 20 mg tablets in half, or do you have 10 mg tablets? Mine are 20 mg - all 90 of them, through mail order...
Wndalina - hope your vacation goes well! Distraction is fabulously helpful with all of this! I was so leery of starting the tamoxifen - it hasn't been much of anything. So far.
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Nena, is that you as a child?? Or is it your daughter? Adorable.
Wendy, vacations are the best therapy, aren't they? I've felt better than I have since menopause began for me 4 years ago on this Effexor!
Hey, Kleenex, nice to see you here.
Hugs to all.
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bluegems...Thanks for the validation...my pinkies are driving me crazy...always had nice long fingers and now they are starting to look freakish. I wonder if it will go away after the 5 years?
Just got back myself from a little vacation to the Carolina's and does getting away really make a difference! The best part was seeing dolphins jumping in and out of the water along the coast in Myrtle Beach. Before we left I wasn't even really sure I wanted to go, but so glad I did. I felt "normal" again.
Actually, I just realized that TODAY is my 1 year anniversay of the lumpectomy!! YAHOO! Funny, but I really feel like I've hit a milestone with one more thing under my belt, but on the otherhand people talk about the 5 year mark and I also look at it as "what's going to happen then?...." Everyday is a blessing and I'm going to try and stay positive!
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Kathi, that is my son who is eleven tomorrow (15 December). Not many people are using their real names as usernames so I changed mine too but possibly to counter that I felt like using a 'real' picture.
Karen, it is so good you decided to go to Carolina. A lot of the time people wait until they feel 'right' before they do things but, unfortunatelly, depression thrives on inactivity. Congratulations on your first anniversary. I do think it is an important one. May you have many many more.
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AccidentalTourist...Thank you so much for your kind words. You are so right about the depression thriving on inactivity.....that is why I wasn't so thrilled about going but when we finally left, I felt so much better. I would strongly encourage anyone out there to push through those feelings if you are on the fence about getting away like I was. That worked better than any medication they could have given me.
Happy Birthday to your son tomorrow and good luck to you on the Tamoxifen...let us know how you do on it. I hope your Rads went as well as can be expected.
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Karen, Happy Anniverysary - certainly one worth celebrating!
Nena, your son is soooo cute! Those beautiful eyes! That great smile! Hope he's had a great birthday.
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You guys are so great to think of wishing my son happy birthday in midst of all our troubles. I would like to adopt you all.
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Lynmas, how did you know about the thickening problem? Did you have routine ultrasounds or did you have bleeding or symptoms?
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Kleenex,
You said, "2NewBoobs - What is the philosophy behind splitting the dose? Does this decrease possible flash activity?"
I was supposed to start taking 20mg once a day after taking 10mg in morning and 10mg at night for 3 weeks. The se's stopped after 2 weeks, I was having no other problems so I decided to continue taking it twice a day....didn't want to take any chances because I'm doing really well on it. So, I guess my philosophy was "don't change it if it works".
Yes, I get the 10mg tablets. All I know is that there is not as much being put in your system at once if you take it twice a day.....it seems to work for me and my Onc is fine with it too.
Good luck!
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Karen56,
Happy Anniversary!
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Just saw this thread and thought I'd add my tamox experience. I started taking it in March 2007 after a lumpectomy and just prior to starting rads. I took it through my whole rads treatment and didn't have any problems. The SEs started after being on it a few weeks and I experienced night sweats, hot flashes, insomnia and pretty bad joint pain. The SEs all subsided to a manageable state within a few months. I was 50 when I started taking it and was having regular periods. I only had one period after starting it (a nice SE).
Then last month I developed blood clots in my leg and suffered a pulmonary embolism. To say the least, I was immediately yanked off the tamox. Once I was started on blood thinners I had some severe vaginal bleeding. They did an ultrasound and found my endometrial lining to be twice as thick as normal. I had a biopsy which came back normal. The drs all think the lining will reduce once I've been off the tamox for a while.
Since I don't want to scare anyone from using tamox, I do want to point out that my sister had an embolism about 6 weeks before me and although she never had cancer, she was taking an HRT. So the drs think this may be a genetic thing and the hormone treatment triggered it in both of us. I'm currently waiting for the results of the tests to see if it is genetic.
Now that I'm off the tamox the night sweats, flashes and insomnia have returned in full force. Test results show that I'm still premenopausal so now I guess I'm just going through natural menopause.
Even with the problems I've experienced, I still think tamox is worth trying. Hopefully the SEs will be manageable and you'll be able to complete the full 5 years.
My one piece of advice to those on tamox -- never ignore aching leg pain (especially in your calf). My leg had been bothering me for a few weeks and I never even considered that it could be anything serious.
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KAK and 2NewBoobs...thank you!
2NewBooks...I, too, love your screen name...I told my husband if I have any other problems, they both are coming off and I'll give Pam Anderson a run for her money ! LOL
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So far, I'm on day 18 with not much in the way of side effects. Got my period at 31 days, but that was my "norm" without BCP's for a long time. My period is starting off with a bang - I was hoping that Tamoxifen would encourage it to disappear (I'm 45), but I've heard some women say theirs got heavier...?
My skin was really getting dry, so I had to switch my facial products. We've also had a change in seasons here in Texas, so that could've contributed to my dry skin.
Sheila - thanks for your story. I'm sorry you had to go through that - scary stuff!
Are we supposed to be scheduled for any sort of routine uterine lining monitoring? Is that something I should ask my oncologist about, or my gynecologist? I met only briefly with the medical oncologist (no chemo, so just a chat about Tamoxifen in my future before I started rads), and don't see her again until February. I may have a make a list of questions. For example, I have no idea if there are any things I shouldn't be taking with Tamoxifen. Is it bad to drink?
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Kleenex I am confused as why these things were not offered to you? Having read in many posts about routine MRIs, vaginal ultra sounds and other diagnostic procedures I presumed that women in the USA are monitored much better than in the UK (where only mammogram is offered). I do feel well after the treatment but am frankly worried about the lack of monitoring in the UK and was going to argue with the oncologist (who I am seeing for the first time post treatment in January) that if doctors in the USA consider it necessary these things should be offered here too.
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Hello all! I am back from our glorious cruise! What a great relaxing time. Massages (which had to be ok'd through oncologist), rainforest room, cocktails and no cooking for a week - sunny 80's - just perfect! Quality time with hubby and 5 year old - and time with just hubby. Couldn't ask for more! Effexor is working very well now. I do notice a difference. Supposed to start Tamoxifen this Friday - yikes! I should be much better off though with the Effexor kicked in.
Glad to see everyone - KAK and Kleenex - and all! I have no burns from radiation - the reduction helped me there - the only burns I have now are from sunning on the cruise. A few remnants of radiation but mostly just the tatt's - our badges of courage!
This week will be crazy - shopping done, but kitchen prep and wrapping. A good time I am sure! Cheers all - I will check in soon!
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Kleenex, here's a link that has 3 pages of info about tamoxifen. I didn't see anything there specific to drinking alcohol, but I do know that tamoxifen, like most drugs, is processed through your liver & that the docs usually monitor your liver function periodically just to make sure you're okay on it. They do this for lots of different meds, so don't worry about it. But what that tells me is that probably you want to avoid alcohol or just drink very moderately. My doc never said I had to avoid drinking alchohol, but if I drink 2 glasses of wine in a week, that's a lot for me. So, anyway, here's the link: http://www.healthline.com/multumcontent/tamoxifen
Wendy, your cruise sounds absolutely fab! I'm jealous!! Hope PA has escaped the massive snow storm & cold weather that seems to be running all across the US right now! We've had a really crappy & sloppy couple of days here in Rhode Island -- a foot plus of snow, then today sleet & freezing rain, then of course it's going down to 17 degrees F tonight so all the slush will freeze. Tomorrow it will be below freezing all day, but at least the sun will be out. GRRRRR. And I have to drive around all day for work......
Nena, the stupid thing with the US (among many other things) is that although we have some of the best healthcare in the world here, we also have millions of citizens without the insurance to cover it or the money to pay for it themselves. Also, there are huge differences between insurance plans & coverage in different parts of the country, so there are some really glaring disparities in the quality of care that Americans get. We are hoping that President-elect Obama can do something about all this. Poor man. I wouldn't want his job for anything.
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Hi, KAK -
Thank you for the information! There's nothing on the list that I'm taking that should conflict, although I do take Valtrex and I know that it can affect the liver, as well. I'm like you: kind of a cheap date. If it's a really wild and crazy month, I might have two glasses of wine or a margarita.
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Kleenex, yes indeed, I am & always have been a cheap date myself!! The craziest I get is a couple of semi-annual frozen mudslides, usually around July 4th & then around now. LOL
The good news for me with the tamoxifen was that I was allowed to stop taking zocor (for high cholesterol) & fosamax, because tamoxifen lowers cholesterol & helps maintain & build bone density. So, hey, my liver will have less to do!
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Awesome to give the liver a break! And way to focus on the positives with Tamoxifen. Mudslides sound yummy. Obviously, it wasn't our drinking habits that brought on the magic of breast cancer...
I've had a couple of "warm moments" at night over the last couple of days - I just finished week three. Luckily, it's been cold here, and we keep the house cool at night, so I just have to move the blankets and in a few minutes, I'm fine. Not exactly a "hot flash," with big sweatiness, but it will be interesting to see if this progresses into something toastier as my system adjusts to the new balance...
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Hi Kathi - yes it is cold here too. We are expecting sleet overnight onto our roadways that were 9 degrees - so needless to say ice tomorrow am on the drive to work - yippee! Who's jealous of that? HAHA!! AT least it will warm in teh day to 40's so we can get home safe and snug in our beds for the arrival of the jolly man - giggle giggle giggle!
My staff got me some really neat presents today I must share! Daytimers - are little day notebooks and they also have a leather line and within that line a pink breast cancer line. My staff got me a pink leather purse and daytimer book and a black and pink laptop bag - all have the ribbon logo some funds going to BC. They are just so awesome looking! I started to cry. They have been so supportive and just really spoiled me - I feel truly blessed to have such support. If anyone is interested in looking at teh bags I am sure they have a website - but they are just awesome!!!!!!!!
OK - off to have some hot cocoa... :-) brrrr...............
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It's Christmas Day.....rainy and 69 outside. I'm glad it's not freezing, but a little cooler would be nice!
My DH and I will just take it easy today and watch Christmas movies.
Hope everyone's having a wonderful day!
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