Bottle o Tamoxifen
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Sleep is the big one for me, too. I see my MO today and I am going to talk to her about it. Melatonin doesn't really do it for me and she wanted to put me on Effexor. I don't want to take an antidepressant. I can still at least orgasm even if I have no sex drive. I am not putting the final nail in that coffin. Gabapentin has also been mentioned by my GP but others tell me that's for nerve stuff. I will report back. My MO is kind of useless so my expectations are low.
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trvler, i am on the 2nd week and so far no change in the orgasim area. I sure hope it doesn't
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Ladies, My MO has a sign in her exam room that has helpful hints. #1 is find something to laugh about every day. I have to say reading all your posts gives me a 😂 laugh every day. I admit I have developed a perverse sense of humor.....
Egads- I just visualized a tiny little group of Red Devils pushing a leg around....maybe they were red Tasmanian devils...👹👺👿😈
Veeder- The MO who actually said that she had patients who were happy with vaginal dryness. I thought of Football cheerleaders cheering & yelling "go dryness, Go dryness". I was laughing & my husband thought I was 😜 crazy. 🤸🏻♀️🤸🏻♀️🤸🏾♂️
Everyone- When I visited with my elderly family I promised myself I would never spend my retirement watching soap operas. Now as a retiree, I find myself spending my days reading posts on constipation. 💩💩
Runor- I keep a plastic grocery bag on the counter while I'm cooking. My husband thinks it's because I've suddenly become a neat nut. It's really there to hide the hair I pull out of pots, off of plates, etc., etc. Thanks to you, I think I'll wash each hair off, put in in my fridge in a glass jar with a lid & if anyone asks, my reply will be "I've read that aging your hair, then using it to season sauces, provides "natural vitamins" to our 🥘 food.
Thanks to everyone for sharing & maybe with a little humor we'll all have better days!
Barbara
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Hello everyone! I have been on Tamoxifen for about ten months. Not a single hot flash. No side effects at all aside from mild discharge. I have read that some people are poor metabolizers of Tamoxifen, so I asked my onc. if I should have the test for the CYP2D6 genotype and he brushed it off as being unnecessary. Anybody have any input here? Should I seek a second opinion? Or should I just count my blessings that I don't have side effects?
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I think you should count your blessings. I remember being on pregnancy boards and women who had no morning sickness always thought they had miscarried. Some people just get lucky.
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Can I ask how old you are? My doctor told me something like, because I was not in menopause at all, tamoxifen slammed me into it which is why my symptoms are noticeable.
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Thanks for responding, Allison! I am post menopausal at 64. I am on Tamoxifen because I have mild osteoporosis/osteopenia and Tamoxifen is supposed to be bone friendly. Of note, when I went through menopause many years ago, I never had a single hot flash then either!
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Twillis, do you recc. taking the magnesium at any certain time of day
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ThreeC - I only wish there were tiny Tasmanian devils pushing my legs around during exercise.. I could sit back and read a magazine at the gym LOL! I know one thing, the exercises feel like hell some days!
Love your 'perverse' sense of humour....just about died laughing when you said your retirement is filled with postsabout constipation LOL!!! As for 'hair seasoning' well, might be worth a try...if it doesn't work out you can use it for dental floss...or filling pillows! Thanks for giving me my daily laugh!
🤣🤪🤣
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Been a few years since I posted on here, which I guess is a good thing. I had my Dx and treatments all in 2014. Been on tamoxifen since mid 2014. My personal SEs have included night cramps in my legs at times, heavy irregular periods, sometimes months apart, and mor recently a prolonged state (2 weeks) of brown discharge after a period. I have also been informed of a polyp that I am to get removed, with no date set for that yet. Compared to others, I'd say my response to Tamoxifen hasn't been that bad. I do have concerns about what is going on in my uterus. The very heavy periods etc.
I did not search this thread, but wondered if any of you have been advised or told you could reduce your Tamoxifen dosage? I am reading a 2012 article which suggest benefits of lower doses on breast biomarkers, to be the same, whether you take 5mg, 10 mg, or 20 mg dose. It then postulates that reducing the dose would necessarily reduce the side effects. My question is has anyone been told they could reduce their dosage?
If not, and what this article proposes has some basis in truth, then why not? If the percieved benefits of Lower tamoxifen dosage are the same, and side effects are equally reduced, then surely worth pursuing.
As a side note, I stopped taking my tamoxifen for a few days, and my discharge has completely stopped. I am strongly considering taking a month off from tamoxifen, as I have read several on here have done.
My feeling on reading the article, is that if I perhaps maintained a lower dose during my break, then I'd be retaining some, if not all the benefits of the drug.
Anyone care to comment?
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There is a test you can order online (urinalysis I think it was) that I did to test for CYP2D6 . I read about it on here -- and now can't recall the specifics! Try Google. I had to list a doctor, so listed my MO, who brushed off testing too for this.
(I have few SEs -- some but mild, no hot flashes -- and just did this for my comfort.) Maybe it's baseless but what the hey. I came in at rapid metabolizer I think it was, which is good.
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gigibee, I don’t think it should make a difference but I’m not positive on that. I take mine at the same time I take the Tamoxifen just for convince. 6pm, I have my phone alarm set, which I hate but I think I’d forget otherwise.
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wifewbc- I have also read that a lower dose may be just as effective. If you go back to January on this thread there is a discussion on it
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thank you Twills! I switched from taking tamoxifen in the evening to the morning hoping it would help with sleep issues. Haven’t seen a huge improvement. Started the magnesium you posted today.
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I hope it helps your hot flashes gigibee, my sleep varies a bit but has gotten better. I fall asleep fine but I wake up a little before daylight, it was much earlier so hopefully this will last a while. I can usually fall back to sleep. Good luck!
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Wife: Runor is a big believer in a lower dose. I am sure she will chime in and she is very thorough.
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Twills, the funny thing is I haven’t had any hot flashes. I live in the cold Midwest and have been actually hoping for one it’s been so darn cold !
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Gotcha, are you trying it for muscle aches?
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For those interested in reviewing the article I read on low dose tamoxifen research results, then above is the link. It's compelling enough for me to consider reducing my own dosage. Hope the link works for everyone.
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WifeWCB - thank you for posting the article, I’ll definitely be discussing this with my MO. Great info
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Twills,muscle aches and insomnia , fingers crossed , neither are horrible but figured I’d give it a shot to see if either improve.
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Just picked up my first bottle today and start it after my mirena gets taken out monday. I am a little nervous about starting it, but ready to take it and be done with this chapter in my life.
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I am assuming that most of us considering or investigating Tamoxifen dosage changes fall into those premenopausal. Therefore, had our diagnosis in our 30s and 40s type of thing. Difficult to tell on this forum outside of a little deduction or questioning a poster their age
While forum has been an excellent source of information for people living with breast cancer, for many years there is always room for improvement. One of the biggest problems, for me personally, which I mentioned several years back, is that we detail all our cancer related diagnosis with indelicate precision, but omit one of the more helpful details which is our age.
Knowing the age of a poster who may have posted something pertinent to my own struggle, would help me ascertain if it was relevant to my own case. With breast cancer, being able to then compare as many apples to apples, without having to ask more details of a poster, would sure help many of us. Which is surely what his place is about. Perhaps there is a suggestion box I don't know about.
It's been almost 5 years since I started posting on here, and I still have to guess the age of my fellow cancer strugglers, while the intimate details of their disease are openly shared
Understand please, this is far from a gripe. I just want this place to evenbetter. Age at diagnosis is a key marker in how breast cancer is treated, and I think it would be useful in helping people navigate this forum.
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Gigibee, I haven’t heard anyone mention that it helped insomnia but I guess it’s worth a try:)
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I have been on Tamoxifen for about 6 weeks now with minimal side effects. Warm flushes and excessively TIRED have been the worst. I’ve had a bit of urinary incontinence and initially a full feeling in my pelvis but that seems to have resolved so far.
I agree WifeWBC ages in our signatures would be so helpful
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A little update. I had my follow up fr my second endometrial biopsy today. Again there was not enough tissue harvested for a suitable sample. What was examined was normal with no signs of any disease. But I've been referred to my Gyne's Chief of staff fr yet another consult/biopsy/d'n C. What a pain in the uterus.
An update, I had a hysteroscopy and d&c on March 7th. All the tissues removed were benign. The better news is that there was a 2cm endometrial polyp that appears to have been causing difficulty getting a normal reading by the ultrasound and the endometrium is not actually that thick. I do feel a distinct change when I work out. I have an exercise called a plank extension that we are required to do for our annual fitness test. Prior to surgery I could feel that there was a hard lump in the belly, now I do not. Who knows, maybe it was all in my head, but I am quite relieved to hear that all is fairly normal. Have a nice Sunday.
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WifeWBC--thank you for posting the article, I have drug my feet on starting T for 10 months ( I was given the OK for the first 7) and I was reading everything I could get my hands on regarding low doses. I started T this week and am cutting my pills in half until I can talk to my MO about prescribing 10mg pills. Also, I agree on the age thing.
One of the reasons I waited to take tamoxifen was to have my body heal. I wanted to see what were side effects of chemo & radiation and what would be from tamoxifen. I ran into a couple things like "angry bladder" in September or the aches in my shoulder for months, that I would have blamed tamoxifen. I also got my own moisture back in the nether regions in October. I started ovulating again the past few months (with no period). My taste has yet to come back after over a year so I know I am still healing. But I did read a lot of studies on tamoxifen and know that it's more helpful than harmful when it comes to this fight. That said, we are all different people with different ages, shapes, dietary habits, immune systems and activity levels so it's always been hard for me to participate in a blanket solution, which I feel 20 mg is. The fact is, some people tolerate it more than others. I am hoping the researchers will find that there can be different doses that are still effective without the toxicities. I hope to find a balance. Knowledge is power so I'm interested in reading this article. There are several studies on foods like flaxseed that work like tamoxifen. Cruciferous vegetables, mushroom, soy (not processed soy products), etc that have all been shown to decrease breast cancer proliferation or increase aptosis. My point is, with so many women scared of tamoxifen or feeling crappy, or going off it or never going on it, the medical world needs to keep searching for alternatives. I'm happy they are doing that in these trials.
Sammi2006--I'm 3 days in so we'll be starting close to each other!!
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I am reconsidering my decision to continue tamoxifen to 10 yr mark. For the second time in 7 yrs my provider has changed my brand and side effects have substantially incresed. Now I'm having difficulties finding my old brand which was Watson.
Is anyone taking Watson? A search of their website brings you to Actavis pharmaceuticals.
Since I've reopened my account here (couldn't remember my old info) I've been considering taking a lower dose or stopping all together. My main problem since I was switched to Mylan is joint pain.
Thanks for any input.
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Trvler, you might want to talk with your MO about Gabapentin. There are some good studies out there which show that it helps with hot flashes. It can be tried at low doses, and at higher doses, so it is not like a sudden train wreck. Even though its first purpose has been for nerve damage, it does seem to do something about hot flash triggers.
I was already on gabapentin for nerve damage from Taxol, but at a moderate dose when I went on Tamoxifen. My hot flashes were intolerable by the time I reached the 6-week mark, so we stepped the dose up to the maximum, and it has made a welcome difference. I am able to function again.
I am also on Effexor (I guess I am one of those lucky hot flashers). Between that and the gabapentin, the libido issue is very evident. But I am still able to climax, so I still have some good moments. I just have to be more mindful of making the most of those times.
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I agree about the age thing as well. I was diagnosed at 29 and will add that to my signature.
So tomorrow I go to the gyne to get an exam and my mirena iud removed, and then start tamoxifen after it is out. I have been on hormonal bc since I was 18 and am a little nervous about combination of coming off of it in addition to starting hormone therapy. For some reason that makes me more nervous than when I started zoladex.
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