Bottle o Tamoxifen
Comments
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Lala1, thanks for sharing...that was great information. I started tamoxifen April 11 and met my new gyn this past Monday. I haven't had a period since I stops BCPs the week of my surgery last September. My gyn said that if I have any bleeding at this point, he will do an office biopsy. If this happens 3-4 times, he'd advocate a hysterectomy. If all this takes two-ish years to play out, then he'd remove my ovaries too, thinking that by that time I will have gotten most/all of the benefits from them I can. (I need as much bone health as possible -- both my mother and father had osteoporosis.) I'm not relishing the idea of more surgery, but I would love to have my ovaries out and KNOW that I've gotten rid of their estrogen! Good for you for advocating for yourself, and best of luck with your surgery!
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Hello, ladies! A question about pelvic pain. I am 49 y.o. and was still having regular periods before starting tamoxifen (menopause is late in our family--my 56 y.o. sis is still having occasional periods). I have been on tamoxifen now for five months, with just a few side effects (mild hot flashes, hip pain for a short time). I have only had two periods since starting it. At my yearly physical with my primary care doctor, he said my uterus felt asymmetrical and ordered an ultrasound. Results were inconclusive so I had to have a CT scan. The scan showed some thickening and a large uterine fibroid and some ovarian cysts. My MO said there was no need to do anything, since I wasn't experiencing any symptoms. Since then, however, I now seem to be experiencing quite a bit of pelvic discomfort--like when you are about to start your period. Pain meds take care of it, but now I am having stomach pain from the ibuprofen and/or acetaminophen. The pelvic pain is not unbearable but is uncomfortable. I am wondering if the fibroid will continue to grow. I am also preparing for a July DIEP surgery, so don't really want to be distracted by this issue. Thoughts from others about the pelvic pain? Have you experienced this--does it come and go? What helped you?
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Hey everyone! I have been on Tamox for about 2-1/2 months now. Two weeks ago I had a pap and a uterine ultrasound to get a baseline to monitor for any changes. I just found out that they both came back abnormal. The pap showed some abnormal cells and my uterus was slightly thickened. My doctor said it could possibly be caused by the Tamox. I have to go in for cervix and uterus biospy, but I was just wondering if anyone has had these abnormal results. I can understand the thickening a little bit because my periods have been lighter than they were before Tamox, so that makes sense, but not the abnormal pap.
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Bec65,
Hi Bec65. It seems as though we have a very similar Dx. I was wondering, how are you doing on the Tamoxifen in terms of any SEs? I am a bit nervous because I begin taking it this Friday. I begin radiation in a week or so, as I just went for my CT Sim last week. My MO is starting me on Tamoxifen right away, but it seems as most start with Tamoxifen after radiation. Chemo made my periods stop, but, at the age of 47, I am worried about them returning. My MO did a hormone level test on me, and she said I was pretty much menopausal, so she is hoping it does not come back.
Does anyone have problems working and being on Tamoxifen? I plan to go back to work toward the end of my radiation therapy.
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Cannoli1 - I started a new job a week after radiation stopped. Started tamox a month after that. I have been on tamox for 3 months now and it didn't affect my work at all. Good luck
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I started Tamoxifen a couple weeks ago and so far so good. I had night sweats before Tamo and that hasn't changed. Fingers crossed.
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Cannoli, yes...look how similar we are! I'm not having any SEs from Tamoxifen that are really worth complaining about -- I have the occasional "warm" flash and that's about it. My ankles swell if I'm on my feet too long and always by the end of the day. My MO said this could be from Tamoxifen, but it also could be from the Aleve I was taking regularly for joint pain. (I started having REALLY bad joint pain about a month PFC. My MO said this is an uncommon late SE from Taxol and should resolve by 6 months PFC. Until then, I look and feel like a 100-year-old woman when I get up out of a chair!) Anyway, I stopped taking Aleve yesterday, so I'm monitoring my ankles to see how they do.
My MO and RO were adamant about waiting until one week PFR to start Tamoxifen. We didn't have a big conversation about it, but I do remember the reason for waiting had to do with efficacy of the radiation. I know most of my ER+/PR+ peeps from the Nov. 2013 chemo thread waited (or are waiting) until after rads to start Tamoxifen. I tried googling "tamoxifen during radiation" and the following bc.org link came up:
http://www.breastcancer.org/treatment/radiation/a...
The first big entry from Dr. Weiss pretty much sums up what my doctors told me. It sounds like in our shoes, a strong case could be made for going either way. What's your gut feeling?
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I have been on Tamox for about 2 months now. I worked 6 hours per day thru rads and started taking 2 weeks after my last treatment. I have been working full time since April. I did have some stiffness but that is getting better, mild flashed and wake up quite often at night. Not too bad, so far I am doing well I think. Best of everything to everyone.0 -
I will be starting tamoxifen at the end of the week, which will be 10 days after finishing up rads. Just wondering if anyone has advice on what time of day to take the tamoxifen. My MO says to take it in the AM, but I thought I also heard somewhere that the side effects are easiest if you take it in the evening.
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I take at night.0 -
Kuriastas, I take mine at 8 PM because I heard you would sleep through the side effects. Well I seem to wake up frequently at night to cover and uncover myself. I'm hot, then cold, then hot.... I started Tamoxifen 4/4 and it's just been in the last couple of weeks that I've noticed hot flashes during the day. They don't seem to last more than 5 minutes but they are happening several times per day. I'm wondering if taking it in the morning would make a difference. i'll be curous what others say.
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I usually take mine in the morning but will take it at night if I've forgotten that day. I notice no difference with the timing of hot flashes (my biggest SE) -- taking it in the morning doesn't prevent the night sweats. I was having hot flashes/night sweats before starting tamoxifen, so it may be that this medication is not even responsible for them.
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I started off taking it at night because I knew I'd remember it then with my sleep aid. However, I started waking up around 3 am each night, totally overpowering my sleep aid which had previously worked for me without fail! It didn't feel like it was because of hot flashes, but I think it was and that they were mild. Anyway, my MO said to adjust the time I take it, so I've been backing it up gradually. The past couple days I've taken it late afternoon/dinner time and I've had "warm flashes" about 4 hours later in the evening . My goal is to take it right when I wake up with another drug I have to take at that time. If I get hot/warm flashes, I'll just learn to deal with it -- a good night's sleep has become too precious!
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Juliecc,
My ONC told me the same thing; to take it before bed so I sleep through the side effects. I take a Xanax to help me sleep, so hopefully this will keep me sleeping through the night.
Bec65,
Not sure how I feel about this. I know that both my MO and RO agreed that taking Tamoxifen while doing radiation is OK. My RO did acknowledge that some doctors feel Tamoxifen should follow radiation for the reasons listed in the link you provided, but he believes that the Tamoxifen will have no affect on the radiation.
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I started tamoxifen during my second week of rads. I have several friends who did the same. I've never heard of starting the tamoxifen after rads are complete..interesting article. It seems there is no wrong or right way, just preference.
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Hi ladies -
I have a couple of questions for you. I finished rads last week and am supposed to go on tamoxifen the first week of June. My MO told me to see her 3 weeks after rads. I was having periods every month and they were very heavy before chemo. My periods stopped during chemo. Did your periods stop during chemo? If so, I noticed that it seems like most of you are having periods with the tamoxifen. When did your periods start? Also, one of my docs ran an estrogen blood test and it came back post menopausal. Just wondering what you are hearing from your MO's. I am a little confused.
Kim
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lonnie713,
How are you doing with your tissue expanders? Mine are extremely uncomfortable. I start rads in about a week or so, and my PS does not want to do the replacement surgery until 6 months after rads. I hope they do not stay this uncomfortable the entire time.
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KJ....I haven't had a period since before my first chemo treatment. I am praying that it does not return between now and the time I get my hysto/ooph. Fingers are crossed!!!!! It sounds like you won't get your period based on the post menopausal diagnosis.
Cannoli......the expanders are still uncomfortable, not as bad, but still nevertheless. I go commando, a cami or wifebeater and that's it, anything else is uncomfortable. I haven't seen my PS since my last fill. He said to come back after rads. I have to do the exchange and the hysto/ooph. When my PS sees my skin from the rads (which isn't bad, just red, more burning on collar bone) he will probably want to wait some weeks to do the exchange. If that is the case, in the interim I will do the hysto/ooph. My RO said I can get that 4 weeks after rads or sooner depending on how I feel. I'm looking at maybe August (wishful thinking, I know) for the exchange. I just want it all done!
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lonnie713,
I am hoping my period does not return as well. My last period was March 31st....right after my first chemo. My ONC had me take the BRCA test for ovarian cancer to see if it runs in my family, and it does not....thankfully. I'm not sure what I am going to do in terms of thinking about getting a hysterectomy or having my ovaries removed. I have an appointment with my OBGYN in July, after I am done with rads, and I will discuss this with her. I do have a pretty large fibroid on my ovary, which my ONC says do not turn cancerous, but I'll wait to see what my OBGYN says in terms of having it removed. I can't bear to think having another surgery, other than having my tissue expanders replaced with permanent implants.
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Cannoli1- I am 40. My MO started me on Tamoxifen right away, bu the RO had me discontinue during radiation treatment. I went back on it as soon as treatment was done. I am a full time police officer and I do have SEs from the drug, but I am still able to work. Some days are better then others, and I can always take the day off if need be..
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Hi ladies. As I mentioned in an earlier post, my Tamoxifen was just switched to Fareston (same base drug, different name and interaction with Prozac). My MO called today and told me that she wants me to have a baseline EKG. She mentioned Long QT and so did the prescription info when I picked it up. Is anyone else taking this version of Tamoxifen? If so, did you have to go for a baseline EKG? Trying not to be nervous, but I love to run, bike and swim so heart problems scare me. Thanks for being supportive!
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Kim - I was 37 at diagnosis, and started my last pre-chemopause period the day of my first TCH infusion. My cycles started back 4 months PFC. I started taking the tamoxifen 6 months PFC a few weeks after I finished rads.
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Hi,
I was wondering if anyone else is soooo sleepy on Tamoxifen. I am also on a low dose of Effexor so maybe that is not helping either but wow I just want to sleep all the time. I started Tamoxifen in September and it just doesn't seem to be getting better. Any suggestions?
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Ndgrrl - I am starting to notice fatigue setting in more and more (3 months on Tamox now) - however, I can NOT NOT NOT stay asleep at night
I checked this weekend, and I am awake every 1.5 hours. It's driving me insane. So the sleepiness during the day for me could be attributed to the lack of a good nights sleep.Also - this weekend my pharmacy switched me from Teva to Apo. Not sure what to do - I have a month left on my Teva .. not sure if I should make the switch (read good stuff about Apo) or try to keep on the Teva.
Anyone have any thoughts on that ?
Have a wonderful Monday ladies !0 -
I find that I want to at least rest 9-10 hours. I may not sleep the whole time, but I still get very tired. I think it is a combo of everything.0 -
Ladies - I am sorry to hear you are having difficulties but so happy to know I am not crazy.
My oncologist was totally uninterested in any of the side effects I reported but did tell me to ask my GP to check my hemoglobin.
GP assured me the hemoglobin was fine and asked me some questions.
Turns out if you wake up 3 or 4 times every night you will feel tired the next day and have cognitive problems too.
I guess I would have known that if I could think a bit.
So - I am just going to nap as much as my job and life will allow. The GP prescribed a sleeping tablet but I don't want to start with that.
I was thinking of starting to take the Tamoxifen in the morning - I wonder if that would help?
MrsDarcy - if you were doing really well on Teva I would say stick with it - but seeing as you have sleep issues it might be worth changing and seeing if there is a difference.
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Hi, I forgot to mention in my last post that I am also having ovarian pain. I thought at first I was ovulating( I had a partial hysterectomy so do not have periods but still do have my ovaries) But for the past couple weeks my right side has been hurting more so when I am sitting. It feels like I do when I ovulate.
Can Tamoxifen cause ovarian cysts? I have not had one before so not sure what they are.
Thanks again.
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I have pain like that too, and I haven't had a period since 2010. My cat scan showed uterine fibroids and an ovarian cyst. I see my OBGYN in August and I'll have to see what else is going on when I have my trans-vaginal ultrasound.
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ndgrll- yes. Tamoxifen can cause ovarian cysts. It's definitely worth having that checked out!
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Bec65 - I talked to my MO about my pain and feeling like a really old lady when getting up in the morning and if I have been sitting for a while. He kind of dismissed it and said I was too far out from chemo for it to be a side effect. It started getting worse 2 months PFC - I am now 4 months PFC. I just started Tamoxifen this week as I completed Rads last Wednesday. I have been taking Aleve off and on for the joint issues but it seems to not be worth taking because for me once I get up and going for a few minutes I am ok.
I am taking my pills in the morning. I already toss and turn due to warm flashes at night - but last night I woke up sweating! I am going to have to get a fan to blow on me all night - the ceiling fan is not cutting it. I am calling my OBGYN this week to set up a followup appointment from last year when I was planning a partial hysterectomy due to numerous fibroids and ovarian cysts. I need to meet with him again to get this on the books - since it will be covered 100% by insurance this year. Plus he will be doing a bladder tightening procedure - YEAH!!!!
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