Bottle o Tamoxifen
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florbo---I've always taken my tamox at the same time as my calcium-----pharmacist said no interactions between the two.
Karen---I had a TAH/BSO 4 years ago (ovaries ruptured); I asked about taking my appendix at the same time and they wouldn't do it. The first year was rough with the immediate surgical menopause and recovering from major abdominal surgery at the same time, but the SEs leveled offf over time to where they are more manageable. I still have the hot flashes, but it's the achiness/stiffness that bothers me the most.
anne
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I take meds. for hypothyroid, and it says not to take it within 4hrs. of calcium. So it makes sense. But I'd like to know how I'm going to remember to take my calcium, it's hard enough now, what with chemo. brain.
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Hello Ladies, Thanks for the info Karen.
Bone scan and Ct went ok today, I was just really tired afterward. Dh made dinner and cleaned up.
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kmmd: I have dry eyes too.
I started Tamox about 2 months ago. I still haven't gotten a period. I was always regular to the day & now nothing.My other SEs have been irritability & mild night sweats on occasion. I don't see my onc for another 2 months. Should I call her because I haven't gotten my period yet? The nurse @ radiology wasn't too concerned. She said that I might be done w/ periods now. I certainly don't want any surprises, I already have 4 kids! Well, there isn't much action going on on my bedroom anyway!
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Well I had my appointment with my Onc today and although it was all pretty much good news (as good news goes these days) I haven't really learned much. Yep, dry eyes is a side effect, my ovaries aren't "strong" they are just acting exactly like they were pre-bc. He believes that I am having no hot flashes because my periods are still regular - but things could change at any day. Definitely am an Extensive Metaboliser - got a copy of the CYP results. Tamoxifen in larger doses was used earlier for fertility issues so there is no reason to think it would stop periods.
He would like me to consider the ooph regardless of my BRCA1&2 results because of my family history and age. I came home and did a lot of researching on the net only to get more confused. So much info out there which contradicts each other.
I think I will just sit tight, enjoy the tam train for awhile, get back into running and chill .. and also buy some more eye drops.
big hugs everyone
confused but not defeated
Helena
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Helena, thanks for letting me know about the dry eyes. I miss my contacts. One of my Onc's is really set on me getting ovaries out despite my BRCA testing too. I decided to let the train ride and review the issue again in several months when I'm feeling better from the chemo. I'm not keen for surgery I'm not sure I need.
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Helena and kmmd, I'm curious why your Oncs are suggesting oophs? And kmmd, I don't know your age, but often when close to 40 or older, chemo usually seems to be permanently stopping most women's periods anyway, so why the overkill of also getting an ooph?
My Onc never even mentioned it and when I remarked to him how many women seem to be getting this done, he told me, well, you're lucky, you don't need to do that. I should have asked him why though, I just assumed it was because of my Stage 1, node-, small sized tumor. But I see that many women with pretty much the same stats and age (48) as me are being told that they need to do this. Maybe my Onc is less aggressive than others, I know he is very well respected here on Long Island and knows his stuff, so I don't doubt him. Or maybe it's because my periods have become irregular.
Not that I would ever want to have this done, I'm against the idea, because of heart disease and strokes running in my family and certainly don't need any more libido problems or increased menopause symptoms! Just curious.
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rgluff, we're close in age. The Onc pushing it is doing it based on family history despite neg BRCA. Plus wanted me to go on AI. I tell you, the AI's are better, but not enough better for me to go through surgery. The risk of ovarian cancer he quoted me is lower then my risk of my breast cancer coming back as distant mets according to my oncotype so I'm really not hot about doing it. My other Onc involved is more like yours. Just differences in approach and the "art of medicine" from what I can see. I'm doing well on the Tamox and after the trouble I had with chemo I'm just happy to be on a more normal level and really don't want to be rocking the boat and going back into rehab phase and trying new drugs.
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Hi Ladies.
I am new to this thread. Started Tamoxifen one month ago. I am tolerating it well except for the joint pain. My lower back, knees, ankles, hands and even the bottom of my feet ache constantly. Has this happened to anyone? Do you think it's tamoxifen and if so what can I do to ease the discomfort.
Thanks
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Hi Pickle -
I also started Tamox about a month ago - 7/1 - and have the most terrific joint pain in every area that you mentioned! Advil and other OTCs are not alleviating the pain - which has gotten to the point where I can't sleep at night. I have never experienced this before taking Tamox. I am seeing my med onco today to discuss this and whether she can prescribe certain medication to take care of this.
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Thanks Britt. Please let me know what your onc says.
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I certainly will . . . and here's another thing: I have also been having the most vivid, horrific nightmares since taking Tamox - this also has never happened before taking this medication. Has anyone else experienced this?
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Feeling the joint aches in odd spots, but for me its the low back and neck and shoulder tension and aches! My pcp prescribed 600 mg Motrin, but I swear it doesn't do anything! Haven't had the nightmares, YIKES!
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Hi, all -
Just got back from my med onco - she did a thorough check-up (making sure there were no blood clots) and told me to stop taking the Tamox for one week. She also prescribed Vicodin for the pain. If the pains subside within the week, she re-wrote my prescription to start taking the Tamox again with 10mg in the morning and 10mg at night . . . I was taking 20mg per day.
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Pickle...hi! I have been on Tamox for only 2 1/2 weeks and have had every joint area ache at one point or another....driving me insane. My neck has been a mess for over a week now...not a lot of pain, just achy and stiff really. It has been getting better I have been taking 3 aleve per day and each day am waking up feeling much better. So maybe give it some time???? That is what I am trying to do since I have no choice with 5 + years of Tamox in my future. The worst of it was me freaking that every ache was a new problem that I needed to tell my onc's about. I hate the worry about every little thing that bothers us....I am thinking too much! I know my cancer is GONE and all the other symptoms are ones I would probably have had anyway chasing kids around and being 41, not 21 anymore
Britt-No nightmares here....sorry that you are experiencing them. Wishing you happy dreams tonight....beaches, martini's, gorgeous sunsets....go to bed repeating this and hopefully you will have sweet instead of sour dreams.
Eyes......definitely something going on...a bit dry but I am still wearing my contacts for now. I don't like wearing my glasses out...gets too sweaty with the heat.
I take my tamox at 8 each night. Not sure if this makes a difference or not.
hugs,
Diane
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Hi all - I have always had joint pain - although it seemed to get better when I was going through the chemo treatments. Now joint pain is back again. It could be that I was less active during chemo and I have picked up my pace again since I'm not so fatigued anymore. But my feet do hurt in the morning when I 1st get out of bed. Also - I do not sleep for long stretches at all, I wake almost every hour. It is horrible.
Britt - Since you mentioned nightmares, I did tell my husband about a dream I had and my dog ended up decapitated, it was more weird than scary. I can't remember that last time I remembered a dream of mine. I can't believe I slept long enough to have a dream!
Hi Diane - I take my pill around 10:00 at night.
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Britt: Thanks for the update from your onc and I hope your nightmares subside. Are you taking any other meds?
Diane: I take my tamoxifen in the a.m. (20mg). Maybe I'll try it at night. My joints aren't painful like sharp pains...it is more achy and sore. I can relate to the feelings of always thinking it's something else but I just keep telling myself that I am canacer free! I think it will get easier over time to not worry so much.
My eyes had been very dry and apparently that is also a lingereing side effect of chemo . I saw my opthamologist a couple of weeks ago and he just recommended "Refresh Tears" 4 times a day. I love it...very soothing.
Patti: I think some of my joint pain may be from being so inactive during chemo and now I am doing more and more but I think part of it is Tamoxifen. My feet hurt first thing in the morning too...they just feel really stiff and achy. I am still taking 1/2 mg of ativan at night to help me sleep. It helps.
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I have Ativan, Ambien, and over the counter Simply Sleep. None really help but the Ambien works best. Have one pill left since it was prescribed for Chemo (for nights on Steroids). Ambien must be preapproved by Insurance, and I really don't want to get hooked. I rotate them around depending on how tired I am and how many nights I didn't get enough sleep. I'm going to keep a better record of my sleep and aches to report to onc. 8/19 at next appointment.
Thanks for the suggestions.
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What's "ooph"?
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My eye doc. recommended Refresh drops, and fish oil tablets, seems to work, but it takes awhile. Be patient, we all know that word....ha ha
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Kari- DH: "That flower is as big as your head!"
A true romantic eh?
Oh hey, all that dancing together and sweating together- wow that sounds HOT and I don't mean the weather or flashes! WONDERFUL! Yeah, normal life. Almost seems too easy.If I forget to PM you for FB, please PM me... I am still working on this post!
on to page 119...
Helena- when is your spring? I take the Bausch & Lomb Preservsion AREDS vitamins (pre-DX) because I read a study (yes, right, big surprise there, I read studies pre-DX) that said they'd been proven to forestall some of the eye aging issues, I can't even remember what. Supposed to take them morning and night but since I have to take the antacid (used to be nexium) once a day anyway, I through the B&L in there. So I get it once a day (like chicken soup, it couldn't hurt, right?). And Iron 'cause GP said it was low, again pre-DX. When I start Tamox, I'll just throw it in with them all. Wish the pill was just a little smaller... I take them all at once.
Mary, was thinking about you Monday, and all this week. I been off slaying dragons, you know the sh*t that piles up while you're busy dancing the cancer tango... 5 days of research on a deadline... brain hurts but I did good. Anyway, that's why you didn;t hear from me but if you need anythying, email, call, say something, K?
Diane- your avatar ROCKS baby! I am trying to caatch up on posts and i an two pages behind so by the time I read everything up until now I am sure I will find that others have explained to you that although the presence of hot flashes has been shown to mean a lower recurrence rate, the absence of them does NOT mean a higher recurrence rate. It's one of the cancer conundrums. And taking Tamox does not stop your period... it might, it might not but probably not. Fun fun fun eh? And I think, this part i am not sure about and don't have ready evidence but I think Tamox works more by interfering wth cancer's ability to reproduct by blocking it's estrogen receptors rather then by just lowering your estrogen levels. But then, they really don't know how it works. it was kinda an accident that Tamox was found to reduce cancer recurrence. Like Madame Curie and her moldy bread...
Karen- thank you so much for sharing your experience. You make it sound easy but it also sounds really hard!!!!!
Vivvy- yah you are a star, when you dont have one of those pill dispensers it can reallly be tough to keep track! I need to sort trhough the older pages, find Jule's post and click on her name. I tried to find her profile by name and it didn't come up. If we find her profile you can see her last post. She may have just moved on, or she may have changed her BC org name. Ah.. OK, Helena's got her on FB... I'll stay tuned...
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kmmd - I had laser corrective surgery over 10 years ago so don't have to worry about contacts or glasses any more. The dry eyes must make it very uncomfortable.
MBCR an ooph is the surgical removal of your ovaries - to stop the production of estrogen as it puts you into immediate menopause.
Rose - I am like kmmd with the family history as my younger sister was dx at age 35 and me at 46 so they think the risk is very high for ovarian cancer. I'm really not convinced but it is such a horror of a thing that I don't want to discount it just yet. And to be honest the thing that is stopping me is taking AI's. Tam is working so well for me and like kmmd everything is going so well just now after a turbulent 8 months I too don't want to rock the boat. Sigh. Will wait for my BRCA results and decide then.
Hello to all the newbies.
Leggy & Pickle - got some drops today - feeeeeeeels nice!!
Britt - I take 10mg both morning and nite and it works fantastic for me (especially now I have my new dispenser!!!!!!!!!!) Works so much better than the 20mg at once.
Rachel - gorgeous one - hope there's a lot of dragon pieces lying around over there!! I did a couple of hours research myself yesterday about periods/hot flashes/CYP test results and was totally bamboozled as I really don't think there is an answer or even an accepted theory on what is to be expected from Tamoxifen. Oncotyping shows how individual everyone's cancer is and how our body reacts/adapts to adjuvent therapy. Surgery is soooo much easier to get your head around.... and spring is Sept/Oct/Nov ......google Byron Bay, New South Wales, Australia (der!).
big hugs everyone
Helena
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WoW So much to read. Welcome Pickle, Britt and Diane, enjoy the the ride, it has not been that bad.
Rose, Helena, Kmmd, I am opting for an ooph. Not because onc recommended it, but because I tried three years before bc to have complete hyster, due to my mom dying at 29 from ovarian cancer and strong cancer history on my dad's side of the family as well(aunt and grandma died of bc at 33 and 38). There is no clear cut test for ovarian cancer and at times it is discovered too late. The surgeon can not believe why I have not had this done sooner. He is a fertility specialist who is the head of the OB/GYN dept for Geisinger in Pa. He hired the surgeon that did my BS.
Rachel, good luck with you deadline. Yes alot get neglected when ealing w/cancer crap. I have to take all three kids for physicals today, since they did not go earlier in the year due to surgery, second surgery and then rads.
Tomorrow I will hopefully get the results fo my tests. Since the rads onc is unble to squeeze me in and unwilling to give info over the phone, I had nfo faxed to the surgeon. Otherwise I would have to wait until Aug 11. No thank-you!!!
Have a good day.
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Oops!!! forgot to say. I have noticed that any se's that I have seem to get worse just before my cycle. I am due to start my period on the 30th and my hotflashes have been horrible the past two days. However, it could be from iodine or nuclear medicine from bone scan and ct. As far a joint pain, I can not blame tamoxifen for that since I have had knee and ankle pain for the past couple of years.
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Hello sisters.
I am back on this tamoxifen train...at least when I was on this thread........way back..that's what we called it.
I was on tamoxifen for a year back in 2007-2008, then had a hysterectomy and was put on an AI. That lasted for 8 mos. I couldn't take it anymore...severe pain and s/e's. I switched to another AI, but it was worse. There was one more to try..but I said NO. The o/c then put me back on the tamox, since I experienced fewer side effects. I have yet to fill my scrip....I am giving my body a little more rest. I will be starting it within the next week.
Here's hoping that all of us on tamox...have the tolerance, and more importantly, get the results needed to keep the estrogen down...and keep us Cancer FREE!!
xoxo
Lisa
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Hi ladies! Here is my two cents on things mentioned (and this is a great thread)--
Tamoxifen works by "docking" at estrogen receptor "ports" which means that estrogen can't "dock" there so less or no effect on the body. Interestingly, tamox decreases estrogen effect on breast tissue but stimulates other areas like bone (this is why it's actually strengthening for bones vs AIs), uterine and ovaries. The uterine and ovary stimulation can cause problems but the risk is pretty low. So it's ok that pre-meno women still have active estrogen-producing ovaries.
For joint pain, try glucosamine and MSM combo (supplement). And it should be the sulfate version. I had like one twinge when I first started taking tamox but then it went away so not sure if it was the glucosamine helping but it's good for your joints anyway and not harmful.
I had the discussion with my onc about SEs vs no SEs and she said younger women tend to tolerate tamox better in general. I had the test done to see how I metabolized tamox and it showed I did it very well so am not worried about my lack of SEs.
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Lisa, welcome back to the train, you know the drill, it stops and picks up more passengers, ALL ABOARD!!!! I think I read soem of your posts here and maybe also when the AIs started to make problems. Here's hoping your return is a nice ride.
Allie, that's how it was explained to me. I have a raunchy sense of humor, so I like the "dock blocking" metaphor, especially because it rhymes nicely with the "cock blocking" metaphor I had for Tamoxifen. When it was explained to me, the doc drew things sticking out of a cancer cell, to say that it was good that these "receptors" were still intact on my cancer cells, these receptors being the reproductive organs of the cell. (I guess you have to see how he drew it). Anyway, I pictured Tamoxifen putting condoms on these sex organs of the cancer cells. Tamoxifen, the cock and dock blocking drug...
Helena, I believe I nailed the dragon's ass to the wall. If I did, then then it's epitaph should read: "Never try to f*ck with a mac user with a digital camera"
Mary- that sounds EXACTLY like the situation with my FISH test. I saw like 4 or 5 ONCs, but I had the luck and I guess smarts to list a friend of the family who happened ot be an ONC on the list of people at the BS who should get results. When my FISH test results came in, they were sent to the ONC I did not choose, the one who was about to deliver her baby. (She said it was in two months but I was stunned she'd even consider taking on a new patient when she KNEW she'd be unable to be there for me within two months fcol!!!!) Turns out, she was in the emergency room with pre-eclampsia (sp) and her idiot phone answerer said she had my resultts but I couldn't have them for over another week when I could get an appt with another ONC in that practice. I called the family friend and got the results immediately. Jerks.
Someone also told me recently, a lawyer friend with BC, that they can not withhold your medical records from you, but I understand and agree that it's a tough road to try that on these idiot phone answerers.
It also makes no sense that you could wait until August 11, I would think they'd need that info before surgery.
Hugs and hope that you get your results tomorrow!
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I actually got the CT results today, they were clean. The bone scan results had not been added to my file yet. I guess it is a good thing to use doctors in the same system, because once one scans any results into my chart at Geisinger, all my doctors have access to it. The only reason I did my rads at a different hosp, was b/c I was not drinving an hour on back hilly roads during winter weather here in the Poconos. 10 mins on the interstate was a much better option.
Hopefully I will have the bone scan results tomorrow.
Lisa where in OHIO do you live? I used to have family in Fremont and my MIL's best friend live in the Columbus area.
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Mary Yeah baby!!!! YAY!!!!
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Mary - fantastic news. Thinking of you 2morrow for the bone scan results. ((hugs)) And also big hugs for your mum - just so young - my mum died at 38 - killed by a drunk driver. Too young.
Hi Lisa - lovely to see you here - sorry about your bad ride with AIs - hoping tamoxifen is kinder to you and here's to being FREE!! Yeah.
AllieM22 - hi there - I also don't have SE's but my CYP test had great results so I am also confident that it is working. My Onc thinks it is because I am still getting regular periods - they arrived today....
Going to Melbourne tomorrow for 3 days for my SIL's surprise 40th birthday and not taking the laptop - sure I will get withdrawals!!!!! Take care everybody.
big hugs
Helena
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