Bottle o Tamoxifen
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Bounce
I haven't mentioned the issues to the dr as when I went to see him both issues had gone away. They seem to go away and come back. Also I am not really having any pain, just stiffness and cracking joints. Very strange. I am seeing someone in a month so I will mention it them if it is still an issue.
Also very strange about the blisters in your mouth. I know that after I started the Tamoxafin the skin on the left side of my face dried up and peeled off. That was weird but I have had no issues with that since.
Strange what all these treatments do to our bodies.
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Shoppygirl, one of the SE of Tamoxifen is joint pain. I feel my hands stiff at night, and my knees bother a little. I never had this before until the Tamoxifen.
I have to say that now, after a month with Tamoxifen I feel less of the knees pain. Ask your doctor, maybe calcium?
If you read this thread back, you will find a number of ladies talking about the same SE and what they did for them.
Good luck!
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shoppygirl - I know what you mean - a while ago I had a pain in my side for 3 weeks. Finally made a doctor's appointment and the pain went away!
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Lahela, wishing you the best as you transition to your new treatment.
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Bounce--I have the exact same thing inside my cheeks!! Didn't give it much thought till you brought it up. I'm sure it's just another Tamoxifen thing!!
Shoppygirl---I added Ginger and Turmeric to my diet which I feel helped alot with the joint/muscle pain. And regular exercise, of course. Tamoxifen is famous for this side effect!
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Thanks everyone for reading my mind by asking and answering the questions I have but haven't asked yet. I'm at the end of week 1 of being on tamox and i've had incredibly vivid dreams (with George Clooney no less lol), and lost a pound so yay. I've had a headache though since day 3 and am pretty lightheaded. I've also had a bit of a metallic taste in my mouth. Has anyone else had that? Oh ya, and I find I have some nausea too
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Lala
Thank you for the advice. Is it a supplement that you buy at the health food store?
Also, I am so scared to take anything natural as I am so concerned with it interfering. May I ask if you had to check with your doctor first before taking the Ginger and Turmeric? I would love to start taking it too.
I have also found that excersise is they key to helping with the stiffness but I just had an ooph last Thursday and am limited in what I can do. I am now thinking that is probably part of the reason for the increased stiffness.
Diva,
I have had some strange dreams since being on the Tamox, not George Clooney but still very strange!! Lol!!
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I'm still curious/ fascinated about this vivid dream phenomenon some of us have experienced. Anyone understand it at all?
And yes, exercise does really help prevent stiff/sore joints....and I am only a convert during the last year.
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shoppygirl, what about trying glucosamine? I don't know if it's one of the supplements that can inhibit tamoxifen so you'd want to check on that, but otherwise it is a good thing to use for joint pain :-)
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Diva, I also have that metallic taste in my mouth and very dry mouth at night.
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I thought I checked on glucosamine and it was ok - but turmeric is not! It's ok in food but not as a supplement.
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Awesome information !
Thanks!
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Headeast. Thanks for letting me know as I thought I was going nuts. I'm drinking a lot more water and still have such a dry mouth.
Shoppygirl, I'm not even a huge George Clooney fan but after my dreams...wowza. Lol
So now I'm trying to stay calm because I just found a little hard pebble in my other breast. Feels very different than my tumour did but anxiety level has gone up a wee bit tonight. Thinking happy thoughts!
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Shoppygirl--I buy both at the Vitamin Shoppe. I bought their brand of ginger and the Gaia brand of turmeric per my doctor.
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Hi ladies!
I just saw my oncologist and received my prescription for Tamoxifen. I'm nervous to start because of all the potential side effects. Fortunately, he said I should wait to take it until after reconstructive surgery on 4/4. He doesn't want to increase the risk of any vasular problems at the time of surgery. I'm still having side effects from chem and am thrilled not to have to take anything for 2 whole months!!
Did most of you have really unpleasant side effects at the beginning or were they just annoying??
Thanks!
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uds17-- Mine were more annoying than anything. I didn't have any problems for the first month, then got the nighttime joint/muscle pain. My nails got a bit brittle so added Biotin. I'm now a year (and 5 days!) out and doing pretty good on it. With a small dose of melatonin and some ginger and turmeric, I have the nighttime pain under control and sleep well. The only thing I truly hate about Tamoxifen is the weight gain! My oncologist said alot of his patients gain 20-40 pounds in their first year on it! I joined a gym and work out 5 or 6 days a week, improved my diet and still don't lose! But at least I'm maintaining within a pound or two what I was before BC. Just very discouraging.... But I can live with it as long as it keeps my chances of recurrence lower!
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hi all - started tamoxifen a little over one month ago and just finished had recon a few weeks ago. So far no weight gain for me but have lost 13 lbs since start of New Year. My DH and I have been tracking our calories as we have put a lot of weight since met and even more since my diagnosis. My MO warned me about weight gain but she said should be ok as long as I drink plenty of water and exercise. The worst part for me has been hot flashes as night. Nurse at PS office suggested to take tamoxifen at night and see if that helps and I think it has. I still get them a few times a night but not as bad as before. I can actually get some sleep!
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oh Diva, I hope it's nothing - be sure to let us know!
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Thx lala! Yep, he warned me about the weight gain. Not looking forward to that at all!!
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uds, some people lose weight on Tamoxifen, so it just depends. I had increased appetite for a while, then decreased, then normal. I had some hot flashes in my second month, then just mild warm-ups. Back to hot flashes when I had to switch brands, but back on Teva for two weeks I've noticed my hot flashes dropped to basically nil over the past week or so. My MO told me not to expect dramatic SEs right away, more like at the 3-week mark, although some people do get SEs sooner. And some just get no SEs at all. Really mixed bag, not worth dreading. Sounds like a great idea to take a couple of months off before your next surgery and just get past the chemo.
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Hi Uds -- I have been on tamoxifen for almost 3 weeks, and can't say that I have noticed any side effects. I get some little warm ups, and need to take my hat off and on during the night, but that has been happening since I lost my hair during chemo, and I can't say it has anything to do with tamoxifen. I gained about a pound so far, but am trying to watch what I eat and get lots of water, fruits and veggies. I have also been a little constipated, but that might be from the vitamins or something else. SmoothMove tea at night handles it for me. I agree with RunFree -- not worth dreading it. Chemo is the worst of this journey for most of us, and you have that behind you.
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Not a really long time to judge but 2 months in now I would say the first week or two I did have some dizziness and nausea but I don't know if that was truly tamoxifen or post-radiation stuff. The vivid dreams are interesting and have continued on and off assuming I actually get some sleep.
I am thinking about this a little differently- the side effect from NOT taking tamoxifen can be recurrence of breast cancer it helps me swallow my daily dose with ease
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OMG, the tamoxifen saga is just getting worse. After express scripts called to let me know they couldn't get the Teva in the 20mg but had plenty of 10mg Mylan on hand well long story short I go online to check the status of the prescription......nothing no record of any prescription sent or being processed. I called Teva and Mylan are both now discontinued and all they have is Watson, which I had a bad reaction too, my thing is they didn't even bother to call and let me know. So yeah for me I have to try and find a pharmacy that has another brand, or just take the freaking Watson and deal the bad reaction!
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hi I need help. I am 67 and just started tamoxifen . I get small sweats but my problem is not being able to get to sleep . I feel wired and I can't even stay in bed. I can read, no good,I can watch tv but I continue to stay up till 3 or even 5 am. I am taking meds to sleep and They do not work !! I exercise, I am gaining weight....glad to know I am not alone. I figure I will deal with that after I get some sleep . I have the last surgery for reconstruction in 2 wks. Really not worried about it .need help with sleep please
9/12 found lump stage 2 a. Estrogen +
10/12 lumpectomy redone ( no clean margins ) 11/1
12/12 -6/13 chemo
8/13 mastectomy both reconstruction
10/13 radiation
2/14 coming finish reconstruction
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Nck when do you take the Tamoxifen, or have you tried both morning and night at times? Some people who have sleep trouble will switch the timing and it makes a difference. Also some people find that early SEs ease up. Lacey on this thread has had good luck with controlled-release melatonin 2 mg when other things hadn't worked. Lack of sleep is a terrible thing.
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Nck, I can totally relate to that "wired" feeling all night, which, as Runfree mentioned, has calmed down for me since I started taking a 2mg dose of controlled release melatonin. That is my only sleep meds and while my sleep is certainly not my old "normal", it is so much improved from being wired nightly until 3AM or so. I can actually fall asleep in a calm state, and go back to sleep if I get up during the night. I also exercise a lot daily (learned at my PE on Monday that I'm 25 lbs lighter than last year at this time....yay!), which still didn't help me feel a relaxed tired at bedtime until I started the melatonin a few months ago. I am so thankful for getting the suggestion of the controlled release melatonin on this thread. Good luck, Nck....
Unfortunate news for me......saw the allergist this week and as the toppling tower theory goes, the reason I am having all these itching allergies, is that I am not avoiding food items that I am mildly allergic to (e.g., putting an apple or pear in my vegetable smoothies), and that sends the allergy blocks tumbling over. So in addition to wrapping my bed mattress and pillow in allergy (dust mite) free covers, I will further limit my diet.....damn! Apparently, there is no way that I can get relief by allergy injections. Of course my ongoing cognitive fog prevented me from ordering the dust mite covers yesterday. Better get on that!
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called Mylan again today was told that they are still temporarily discontinued and she guessed that it would depend on the volume of request before its re-evaluated on the status, called Teva they stated they have a 6-8 week back-order right now.
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Hello everyone. Just read some of the posts on this last page. Curious to find out who else is having any muscle and joint aches and soreness. I started my Tamoxifen 1/24/14 and since I last saw my oncologist 1/20/14 who ordered me to go out and walk everyday to eliminate fatigue which I complained about that it was taking me a long time to bounce back after last chemo 12/30/13. So since then, I've been diligent about my exercise/yoga/walking (increased my miles every time) and last 2/1/14, I started indoor rock climbing again (last time was in Oct 2013 just before I went for my mastectomy). Fatigue went away and I thought the aches/soreness are due to the exercises/walking until I remembered yesterday about Tamoxifen's side effects. I want to know from any of our ladies here, if they have/had it, how long this will last. I have to drag myself to exercise/walk and eager to regain my strength but the aches/soreness slows me down. Definitely having the hot flashes but I can tolerate that.
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RunFree, TeamKim, wyo- thanks for your responses! You're right, chemo is worse. I think the part that is concerning to me is that I knew chemo would suck, but I also knew it was time-limited and so I could handle it; if I do have side effects from the Tamoxifen, it'll be for 5 years.... I just want to be able to feel like me. Does that make sense??
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there are a lot of us on here that have bone and joint pain, hot flashes, fatigue and insomnia. I personally have been on it study since March of 2012. And depending on what brand of tamoxifen is how bad the se's are. My oncologist tells me every time I see, "remember this is a marathon not a sprint".
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