Bottle o Tamoxifen
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Thanks ladies will call someone tomorrow. I can't attribute it to anything and even if it was because of something new I wore (hypothetical) wouldn't that itching be gone by now? It has been at least a week and is getting worse. I have bruises from it because all my levels have been low since radiation. I literally have to take Benadryl every 4-6 hours or I'm constantly scratching. And it is bad when clothes are against it now too.
I live in AZ, so no really changing seasons yet that I could attribute to allergies.0 -
justachapter, I sent you a PM. I itch with Tamox. More itch with Teva,less itch with Actavis.
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I developed a cough while on Tamoxifen and it turned out to be Silent Reflux, the symptoms were cough and hoarseness. I ended up taking Prilosec twice per day. A month after I quit Tamoxifen I quit Prilosec and the symptoms haven't returned.
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hello ladies, I started tamoxifen about 10 days ago I've had a few hot flashes but nothing to bad, however the past 2 days my legs and back have just been so achy to the point it's really uncomfortable ( my calves are really sore also almost like tight feeling) . It almost feels like I have a really bad flu. Has anyone experienced this ? I am fighting a small cold but nothing that should be causing this kind of discomfort.
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Yes, mine lasted for a couple of weeks. It's like when driving in a car you feel the need to get out stretch and walk it off. My legs bothered me more than my back. Try stretching and walking and hopefully yours will subside too. My MO said it is a frequent side effect, but usually doesn't last longer than that.
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I feel pain in my back and hip everyday all day, especially the tightness in my legs. Are you on Teva brand????
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Tamoxifen has given me achy joints and muscles, mostly in my legs, since the first month. My holistic doctor suggested magnesium, turmeric, and ginger all of which made a huge difference. Exercise has also helped alot. I can now sleep much better!
On a side note, I had my 9 month checkup with my oncologist today (and he says no need to come bakc for a year! Woo hoo!). We discussed me possibly having to have a hysterectomy some time in the future, although it keeps getting pushed back as alot of my problems (thickened lining, enlarged uterus, cysts and fibroids) have for the most part resolved themselves for now. I asked what my increased risk of ovarian and endometrial cancer was due to the Tamoxifen and he said endo risk is very very small in normal population but tenfold increase if taking Tamoxifen (but he said it is still very small). But he said Tamoxifen actually REDUCES my chance of ovarian cancer. Has anyone ever heard that? Or had their doctor tell you that? I was under the impression that it increases ovarian cancer risk which is why my Gyn says if I have hysterectomy, he'd want my ovaries out too. So just curious what others have been told.
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Ovaries out because they produce Estrogen, Ovarian Cancer higher risk if you are Brca1+ or Brca 2+.
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Lala, how much magnesium, turmeric and ginger? Thanks for sharing.
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Daisy, I started tamoxifen 4 weeks ago and although I have not had regular aches and pains I had a really bad day 2 weeks in when I felt like I had the flu and my temp shot up to 102. It was gone the next day and other than that the only real side effects have been a constant tummy upset which seems to be subsiding (a bit) the last few days and some fatigue that I attribute in part to rads, and occasional excessive hunger. My MO did mention the possibility of sore calves as an SE. Hope it improves soon for you.
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stage1---I take 1 Gaia Turmeric Supreme which is 500mg, 1 500mg Ginger and 2 SloMag magnesium each morning. I then take 1 SloMag at night. My holistic doc said the Gaia Turmeric is the best, doesn't matter brand of ginger and SloMag magnesium best. He said start with this dose and see if it helps. Try it for 2 or 3 weeks. If not, add a pill of each but at another time of day, up to 3 times a day. The original dose worked for me for a long time but I started to get just a bit more pain at night and adding 1 SloMag tab stopped that. At his suggestion, I also added a tiny dose of melatonin which sealed the deal on my sleep! I take a 0.3mg dose which I found on Amazon. Very few stores sell doses that small. He said start as small as possible and work up....keeping in mind that high doses can have the opposite effect and keep you up at night. I now get a good 7-8 hours of sleep a night. Bonus of all this is that it's also really good for my heart!
Izzysmom--I am 19 months into my Tamoxifen and for the last 4 months have had ongoing tummy issues. Mostly slight nausea with bouts of excessive burping, which drives me nuts, and constant bloating! I asked my onco about it and he said Tamoxifen can cause water retention which is probably why we all gain weight on it. He couldn't explain why it just started after15 months but feels that's the cause. I think it's the Tamoxifen cause perimenopausal symptoms which all these things can be attributed to!! I am also dealing with slight dizziness on a regular basis. He had no solutions for any of it of course!
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thank you, Lala! Yes, I am also taking melatonin, with 3 mg I still wake at 5 am:(. It is definitely the Tamox waking me up.
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Justachapter - what is the latest - has the itchiness gotten any better yet? hope so, what did the DR say??? keep us posted and hope they figured out something to make it go away,,, i actually have heard that many people develop a rash and can be the fillers or the dyes in the tablet - if coating is colored.... not sure - could be any number of things - let us know how you are doing,,,,
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lala, thanks for the info about your supplements. I'm going to try your protocol. As far as tamoxifen and other cancers, I don't think I've heard of any connection with ovarian cancer. My understand is there's a very small increase in risk of uterine cancer (which is why our GYN and MO want to know about any spotting, and some women are monitored for thickening of the uterine lining). But again, I'm pretty sure there is no added risk of ovarian cancer from tamoxifen.
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Gemini4---Thanks for that info. Tamoxifen definitely increases endometrial cancer risk, thus my request for a baseline TVUS which showed a slightly thickened lining which we are monitoring. He must want to remove ovaries just to reduce estrogen levels since I am ER/PR+. That makes sense.
And stage1---Note that I am on a melatonin dose of 0.3 mg which is about a 10th of your dose. My doc was very explicit about melatonin in doses too high can actually make you sleep worse. He said lots of people are more sensitive to it than they realize so starting very low and increasing slowly is the best way to do it. It's just very hard to find doses that small.
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good to know ,Lala, but now that I have been on 3 mg of melatonin, I wonder if I should decrease. I stated with half of my dose, which didn't work well, so I increased to the 3 mg. I communicated with the pharmacist on dose, they said I could take up to 5mg. Sooooo confusing. But maybe less is more in this case?
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Stage1 - I started taking melatonin in the beginning (starting Tamox) too and was on 5mg. My MO approved the 5mg. You can stay at the 3mg I am sure.
I don't take it anymore - it didn't work for me. I find now that a good busy day and a walk when I get home with the poochies make me tired enough to fall asleep. "Staying" asleep is an issue - but I'll take what I can get
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Ladies,I was curious to know if anyone had tried Young Living Essential oils for any of the side effects some of us experience like night sweats, mood swings, low sexual libido. I'm 50 and until Tamoxifen I had regular periods. If I understand all this tamoxifen makes your body exhibit signs of menopause a few of which I just listed. I have a lot of these. They are only a minor aggravation except the low energy. I would really like to feel good again.
I'm hearing rave reviews on the oils from others but didn't know if anyone here had tried them and if they are safe to use with Tamoxifen. I'm not selling them and really know nothing about them. Just curious if they would help.
Thanks,
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MrsDarcy:) sounds like we are the same on sleep habits. Even if I can fall asleep within the hour, I wake in an hour go to sleep just to wake at 5am and seem to have restless syndrome all over! I do nearly 10000 steps a day with my Fitbit, doesn't help:(. It's the Tamox. I will be talking to my dr on this further...
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Hi everyone! I haven't been in here in a very long time but do read from time to time. For those of you who don't know, I am post menopausal and have been on Tamoxifen since Jan 2011. So I am almost finished. Not going to do 10 years of this crap.
In no way am I trying to scare anyone but I feel my experience on this little white pill is unique and have shared it on here in the past.. Yes, I have had the joint pains, hot flashes, etc. BUT, have had numerous uterine issues - 2 hysteroscopies and 2 D&Cs. Last summer, my gyn told me I needed to go ahead with a hysterectomy since I was also having post menopausal bleeding. Why am I telling you all this? My advise to you is this. When you see your GYN on a yearly basis, insist on having a transvaginal ultrasound and if there is any thickening of the uterus, had it removed. When I had my second biopsy done, my doctor also found a 3 cm polyp that he removed - it was benign.
The plan at the time of the hysterectomy was to also go ahead and remove my ovaries but they had to stay put. Many years ago, I had an ectopic pregnancy and there were tons of adhesions. Over the course of all these years, the adhesions wrapped around my ovaries and they are now fused to my bladder. Not a good thing but I have to just live with it.
As far as the risk for ovarian cancer while on Tamoxifen - very rare.
Endometrial cancer on the other hand is something that should be checked for on a regular basis. We can't be too careful you know.
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Wow, Thanks jo, Thanks for your story. I dread that little demon pill every time I even look at it. I am post menopausal, everything still in tact. So far. Only been 4.5 months and already I despise it. Oh Lordy, there has got to be a better way. They better not even think about telling me to on an AL after this for another 5 fricking years, if I last that long. NO way NO how. I threaten to quit almost daily.
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I am with you on that Rett. Although I honestly am not finding SEs of Tamox too bad so far (its only been a month) I do get bouts of extreme fatigue and hunger. I am also concerned about cataracts as my father was registered blind with a white cane until he had surgery for them in his 30s. I have never even thought about that in years until now and as my hobby is photography I need to look after my eyesight. I do get lots of floaters in my eyes. My sleep is bad, waking up early but as its always terrible I can't tell what is normal for me and what isn't.
If things stay as they are and the eyes are ok I may ask the MO if I can stay on it for longer though and take my chances with the uterine cancer as the AIs sound awful and his current plan is for me to change to them and take for 3 years after 2 years of tamoxifen. Just taking it all a day at a time at the moment. No way am I going to stay on anything for 10 years if it makes me feel bad.
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rettemich - I was not able to take any of the AIs. Started on Arimidex and that lasted a whole three weeks. The nausea was unbearable. Couldn't find it in me to eat at all. Then on to Femara. That lasted an entire week. I was so disoriented and again nauseated. It took a lot for my MO to convince me to even try Tamox.
iyzzysmom - Since you brought up the subject of cataracts - that is what I am dealing with now. The vision in my left eye changed dramatically in 2 months time. That was back in Jan 2014. Saw my eye doctor in Aug and my vision has shifted even more but we agreed to not make any changes in my glasses until I see him again in Feb or if I need to go in sooner. I went from being able to see far away to being able to see close up really well. I do wear glasses and had to have the left lens changed already. I am currently seeing an eye doctor and he wants to continue seeing me every 6 months as long as I am on Tamox. He said I may need corrective surgery within a year. Until then, I am will have my lenses changed. The thought of cataract surgery scares the crap out of me. I do a lot of quilting and love to read. I need to have good vision as we all do.
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One thing to remember....Tamoxifen CAUSES thickened lining just in and of itself. It doesn't mean it's necessarily bad. If your lining is a bit thicker, but not alot, then you can possibly just monitor it. It's when you start getting unusual bleeding that you should really be concerned.
I totally agree with jo1955....insist on a TVUS! Be sure you have a baseline when you start Tamoxifen so you have a comparison. That way you won't go through unneccessary procedures. My first US showed all the bad things like thickened lining, enlarged uterus, ovarian cysts and uterine fibroids. My gyn panicked and said I needed an abdominal hysterectomy immediately. I went for a second opinion and a second US a month later which showed no change in most things except slightly less thick lining and slightly smaller cysts. Two months after that, did another US and cysts gone, lining slightly less thick but in the acceptable Tamoxifen range, fibroids still there but unchanged in size, uterus no longer enlarged. Doc was pretty surprised. He said come back in 4 months for another US. So I'm on the "watchful waiting" program and totally comfortable with it. Oh, and he also runs the CA125 test each time as well for added comfort.
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lala1 - We are on the same page. Everyone on Tamoxifen should insist on a TVUS during their first GYN appt after starting the little white pill for a baseline and then a follow up one each year after that. I am so glad I did. My GYN wants to do the CA125 test next year and I am not too sure about this. From what I have read and what my MO has told me, it is not a reliable test. Too many false positives. My MO does not recommend it. I have a year to think about whether or not I am going to do it.
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jo1955---Yep, I was told same about CA125 but my doc says it's still a useful tool in watching for cancer. He said he'd rather have false positives over false negatives!! He feels that doing the TVUS along with the CA125 test gives him a really good idea of how things are going. He does the CA125 every time he does and US which for me is about every 4 months. He said endometrial biopsies have the same problems....they aren't very reliable. He likens them to looking for a tennis ball on a tennis court on your hands and knees with your eyes closed! But he said it's still another good tool to have and when you put all of them together, they are very helpful. I'd rather have TVUS (totally painless for me) and blood drawn periodically for now over having a hysterectomy. I'm so worried about surgical menopause and incontinence!! Hopefully I can string it out till I go thru menopause on my own and then I'll probably get it done. Doc says I'll most likely need it one way or the other, it's just a matter of when.
Why is your doc having you do a CA125 test? I see you had a hysterectomy and I know that's for ovarian cancer. Did he leave your ovaries? My doc says he won't do one without the other because he's worried about ovarian and endo cancer. What was the reasoning for leaving your ovaries if that's what they did? And how was your recovery? I am freaked out about the possibilty of surgical menopause!!!
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lala1 - My ovaries had to stay because they are fused to my bladder. I had an ectopic pregnancy many years ago and was so full of adhesions which is not a good thing. The doctor spent the first 25 minutes of surgery just getting those darn things out. Recovery from the hysterectomy was much harder than I thought it would be. It took me about 2 months to get back into the swing of things. I am a golfer and had to put that on hold of all things.
I was in the hospital for 4 days - was supposed to be 3 days. This is considered major surgery and you will be in the hospital for a few days. I had to stay the extra day because I could haven't a bowel movement. No food or drink for 3 days. Finally, the nurse gave me a suppository to help things along. By the time this happened, the doctor decided I should stay one more day. I was so ready to get home. I usually don't have an appetite whatsoever after anesthesia and the few pounds I lost did not hurt anything.
Went through menopause on my own 6 years ago and the big concern that lead to the hysterectomy was the post menopausal bleeding I was having. I even told my MO who said I needed to stop taking Tamoxifen until after surgery. I was off it for 5 weeks and really starting feel so good inspite of the surgery recovery.
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I had hysterectomy and oophorectomy 9 yrs ago at age 50, due to uterine fibroids, ovarian cysts, heavy bleeding...they did laproscopic/vaginal surgery, so no big incisions or scars. I'm sure everyone is not a candidate for that. I recovered quickly. The first week was the hardest. Fatigue, etc. for a few months. Not begin able to drive or lift things was annoying, but it really wasn't too bad for me. Dr slapped an HRT patch on me right after surgery, which my body didn't like, so I quit after one week, and after that, I think I took estrogen vaginal suppositories for a couple months for dryness; then quit those totally, worried about BC risk (go figure) and haven't had meno symptoms except hot flashes now and then with Tam. I think I was peri-menopausal when I had the hysterectomy, so my body just adjusted, I guess. Personally, I was glad to get rid of the extra body parts...fewer things to malfunction!:)
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Hi ladies,
I was wondering which brand of Tamoxifen would have the least SE, if there is such a thing! Lol
I tried two brands so far: Teva and Novaldex D by Astra Zeneca.
I started on Tamoxifen last June and stayed on it for 2,5 months. I was experiencing a lot of SE from rads (light headedness, pressure headaches, chest and shoulder pain, extreme fatigue, burning trachea, chest, foreign object sensation when swallowing, weakness, sore/hoarse voice), so I thought it might be a good idea to stop Tamoxifen to see if the SE would get any better.
I was off it for about a month and my MO started me on it again this week to see which SE are caused by the drug.
I noticed that since I restarted Tamoxifen ( 10mg for the first week then followed by the full dose of 20 mg) the list of SE now includes bone and joint pain. Yay!
Anyway I would apreciate your input and ideas on this.
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AmazonWarrior - I think all of us has experienced some joint pain. I know I have. I started on the Teva brand and have dealt with the minor SEs. When hubby and I were traveling this summer I had to get a refill at a different CVS pharmacy. I got the Watson brand and the SEs were so bad, I stopped it until I got home and went to my regular pharmacy and restarted with the Teva brand. Yes, I do notice a difference. What brand do you have now?
Keepthefaith - I was not a candidate for the vaginal surgery. My tummy scar is not that bad. I had some "extra" tummy fat under my belly button and my doctor took care of that while he was at it. I do notice a big difference. He suggested it, I didn't.
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