"Tamoxifen Road" - Support and Encouragement
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Thanks, friends! I'll try staying extra hydrated.
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What are the risks of tamoxifen?Because tamoxifen acts like estrogen in the uterus, it can increase your risk of endometrial cancer and uterine sarcoma (cancers of the uterus). It also is linked to a higher risk of endometrial pre-cancers. Raloxifene does not act like estrogen in the uterus and is not linked to an increased risk of uterine cancer. This happened to.mom after 4 years I wish they could come up w better drug
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Wyfreak, Tamoxifen does increase the risk of uterine cancer, the overall increase in risk is low (less than 1%). The risk of uterine cancer goes back to normal within a few years of stopping the drug. The increased risk seems to affect women over 50, but not younger women. I know this doesn't mean much if your Mom has uterine cancer. That is why I think it is so important before starting this med you have a baseline transvaginal ultrasound done and that you continue to see your Gyn, no matter how old you are, for routine screening. Tamoxifen thickens your lining that is a known side effect and most Mo's don't worry about it unless you have bleeding. I had a hysterectomy last year because it made my fibroids grow and it was uncomfortable. But, I have always had fibroids well before BC and it was the best decision for me. I continue on Tamoxifen and I am doing well on it. At this stage I don't want to change meds with other known side effects and start all over again. I hope your Mom is doing well.
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Hi Wyfreak,
I agree with flashlight about getting baseline ultrasound. My mother and aunt both had uterine cancer, so I was also concerned about tamoxifen and its effects on the uterus. I had baseline Nov 2019 and it was all clear. Started tamoxifen 2019, at my next ultrasound which I had to request in Nov 2020 and I had already developed a polyp which was removed this week and sent to pathology. It is most likely benign, however this is something to be aware of. The way it was explained to me is the benefit of tamoxifen outweighs the risk and by monitoring with yearly transvaginal ultrasounds if on the rare case it is cancer it will be caught early and treated with hysterectomy. None of this is easy and sometimes feels like there are no good choices. Best to you and your mom0 -
hi - just updating in case anyone else is going through the same. I was taking tamoxifen for a couple of months, had ultrasound which showed 18mm uterine lining. Had the hysteroscopy, D & c and biopsy yesterday. Had general anesthesia so no problems. Fingers crossed for good results. I get the results 5-10 days apparently. The onc gyn said he saw nothing suspicious during the surgery so I’m feeling pretty good right now
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Good morning all!
Just adding to the information about getting a baseline pelvic exam. I have been on Tamoxifen for a little over a year. I had a baseline pelvic last year and recent Pap smear - all of which were good.
I am doing well on Tamoxifen even though I have apparently made it to menopause. I have not had a period in 8 months. I hope to stay on Tamoxifen as long as I can. Every little bit helps0 -
my pathology came back benign! So thankful.
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LadyC that is wonderful news! So happy for your benign results
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thank you Rah!! Yep, the feelings of relief couldn’t have been stronger. Proof there’s no point worrying unti you know. Easier said than done of course.
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So glad to find this thread! I haven’t read through all of the posts, but see some familiar names- Dani, Salamandra, Pebbles, edj3, Spoonie.... I’ve been on anastrazole for 2 1/2 years. I did well on it, except for my bone density, which has declined to *almost* osteoporosis. I saw my MO on Monday, and she switched me to tamoxifen. She spent a lot of time explaining her recommendation, so I’m confident that tamoxifen is the right option for me at this time, and hope to finish 2 1/2 years on it. I decided to jump right in and start at 20 mg/day. Here’s a photo of our pandemic puppy. Lucy just had her first birthday and keeps us on our toes.
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Aw your Lucy is adorable!
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GreenHarbor- Lucy is adorable!!! Thank you for sharing a picture. I hope you have no SE’s on tamoxifen 💪🏻 .
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Lucy is too cute! Glad you have her to hang with. Hope the switch to Tamox is gentle and easy.
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Lucy is adorable! Thanks for posting, GreenHarbor. I hope you've had a positive experience so far.
I know we talk about dosage on this thread from time to time. Does anyone have an update on how it's going with only taking 10mg?
I've been having some pretty intense mood-related SE's lately and am thinking about cutting back from 20mg to 10, against my MO's recommendation. I'm a pretty small person anyway and standard doses of anything tend to affect me a lot e.g. caffeine etc. Not sure if that applies here, but my cancer was very small and stage 1A. MO says I should stay at 20mg "just in case" but seems to think additional research will one day point to lower doses being just as effective in cases like mine. Any thoughts?
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Hi GreenHarbor, so nice to see you! And Lucy!!
32b - I'm all for experimenting with the tamoxifen *before* it becomes completely intolerable. You might as well find out first whether the 10mg would make the difference for you before fighting it out with your doc. (If you recently had a change in generic brand, that might be something to look at too. Some women have different issues with different brands, but pharmacies will default to whatever is convenient for them unless you specifically ask).
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Thanks Salamandra! I've been trying out 10mg for the last few days but I hadn't thought to look at different brands.
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@GreenHarbor - so good to see you on this thread too! And I agree it's nice to be on hear with familiar and new faces. Keep us posted with your journey on Tamoxifen.
@32B - I'm on 10mg of tamoxifen and have been since the beginning, blessed by my oncologist who read some studies I showed him where they tested lower doses and found they were just as effective but with less side effects, and also because he respected my Dad who was a Kaiser doctor and oncologist and felt I should be on the 10mg dose as I'm only 5 ft. tall. I think the reason some oncologists don't recommend it is because there aren't enough broad studies yet and they don't want you to be the experiment - they like to go with what's proven. Before my Dad retired, he was known for customizing treatment plans to the individual vs. going with the one-size fits all approach, and he was respected by others, so maybe when he recommended I go with 10mg, my oncologist listened.
Anyways, my only side effect has been weight gain. I can't lose weight no matter what I do while on Tamoxifen. However, I have not had the joint pain that is a common complaint - don't know if that's because I swim regularly now and maybe that helps. I still get that time of month so any mood swings are tied to that time of month as they always have been. I take my dose at night as I don't want it to impact me during the day.
All - I know I've been MIA these past few months and that's because the unthinkable has happened, my most precious little spirit animal Domino crossed the rainbow bridge. It was just natural old age, she was almost 15 years and went peacefully in her sleep - and I knew the signs as she was declining quickly in her last few days exactly as Tucker did (stopped eating, mobility declined quickly etc.). I am heartbroken... those who were in the October radiation group with me know Domino so well, we practically had a 'Daily Domino' of sayings and expressions that I would post to the group. She got me through breast cancer treatment coming with me to radiation therapy which made it so much easier for me mentally and helped me (and our group!) stay positive through it all. Domino would hang out in the room while they prepped me, then the techs would bring her with them to watch me on their computers while I got the radiation treatment, then they'd bring her back in when I was done. She became popular there!
Anyways, our "paw family" is just little pup Finley now who is also adorable and very attached to me. But there's no dog like Domino and I know there never will be... she was a perfect little princess, so well-behaved, so loyal, so smart, such MY dog. She was with me through 3 relationships, 3 jobs, at least 3 different places to live, travel all around the US including business trips, and of course through breast cancer treatment.
So... I don't know. I am figuring out how to have this next chapter of life without my little Domino by my side... I miss her every day.
Cheers to Domino and hoping that her spirit is happy across the rainbow bridge and reunited with Kit Kat (her bosom buddy) and Tucker.
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Pebbles- My heart breaks for you. I am so very sorry for the loss of your sweet Domino.
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Hi all - I'm continuing to struggle a bit with tamoxifen and wanted to see if anyone was having comparable problems (or found a way to address these sorts of problems).
My main side effect from tamoxifen has been absolutely severe insomnia - I went from a person who could sleep 10 hours a night to a person who can't sleep beyond 6 AM no matter how late I went to bed. I've been on and off various medicines for that (gabapentin, amitriptyline, melatonin, hydroxyzine, trazodone) without fantastic results. I'm doing slightly better in that department, but the major issue I'm having now is severe night sweats (soaking the bed and waking up multiple times a night). Did anyone else have night sweats emerge as a new side effect like 5 months into treatment? I didn't previously have an issue with these sorts of night sweats so I'm just a little surprised, but they're pretty horrible.
Separately, I haven't gotten a period on tamoxifen for 5 months. However, I'm feeling like I will get a period soon (cramps, lower back pain, the feeling you get when your period is about to start). Has anyone had sporadic amenorrhea where they still get periods infrequently? Do you still ovulate while on tamoxifen? I had a transvaginal ultrasound right before starting tamoxifen, but not sure if I should get another one to make sure that nothing is wrong.
Thanks again for any help that anyone can provide. This drug is certainly not a picnic!!
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Oh Pebbles… so sorry to hear about sweet little Domino. I have always enjoyed your “paw family” stories (((Hugs)))
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Alvra what I can tell is what I have experienced - my side effects tend to cycle thru. For a couple of months, lots of nasty sweaty hot flashes. Then some garden variety fatigue. Throw in a little insomnia for a change of pace. I try to muddle through and see an acupuncturist for the hot flashes (which really helps). I am three years in and cannot wait until I hit that five year mark.
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Pebbles! Domino!!! Even through the internet I felt such a connection to you and this little being, and even though I know every creature has its time, I'm so sad to hear she's gone from you. She was a support animal for all of us I think in that radiation group! What a dog
Alvra, sounds awful
I had an opposite effect on tamoxifen, it was almost sedating for me. But I think the usual round of side effect bingo applies... trying different times of day, split dose, smaller dose, different brands, liquid form, and if all fails (for me it did), a different SERM.My period is very weird on the SERMs. For a while I had the hormonal IUD and thought that was stopping my periods but even after it came out, I get my period every 60-100 days. It's not bad - I love not having periods, hence the hormonal IUD, but the unpredictability is a bit of a bummer. I don't know whether I'm ovulating or not.
Lack of sleep is absolutely miserable. Good luck!!!
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Posting again because my gyn ordered a TVUS given all my bloating - turns out that after 7 months of tamoxifen, I have thickened endometrium (19 mm endometrial stripe) that is suggestive of hyperplasia. It says in the report that this is common with tamoxifen and I haven't had a period in 5 months. I'm asking my doctors what to do but has anyone else had this issue and can anyone offer words of encouragement? I tend to think my dose of tamoxifen is too much - I'm a fairly small person and it's turned me into a high-strung zombie.
I'm just so heartbroken right now. I've been trying so hard to stay on the tamoxifen but I'm now scared.
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arlva24, my situation is similar to yours, only I had been on tamoxifen for 17 months, 10 mg, half the standard dose. I am also menauposal, as I haven't had a period in 2 years. Two months ago I noticed some spotting and I called my MO, without being overly concerned. He wanted me off Tamoxifen promptly and ordered a pelvic scan. The scan showed a very thick endometrium - 22mm, but my MO doesn't think it's anything bad and wants me to switch to an AI. It is known that tamoxifen makes the lining of the endometrium thicken, so it might be just that. Are you scheduled to see a gynecologist?
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Dani, GreenHarbor, Salamandra - thank you SOooo much for your responses. Domino was indeed a part of our radiation group, wasn't she? She is with us in spirit. And little pup Finley got to learn from her and follow her lead.
Arlva24 - I don't know if this helps but in the beginning it was harder for me to sleep and I had some night sweats too, and that seems to have settled down now. I can sleep through the night just fine. I've taken up swimming a lot this year so maybe that helps? Who knows.
On the 'time of month', for the first 6 months on Tamoxifen I was very irregular. I asked my oncologist about this and he said that was my body adjusting to the new hormone and that, if I was premenopausal, it should settle into a normal routine within 6 months. It did, exactly like he said it would, and for better or worse, I am pretty regular and get that 'time of month' once a month as I always did.
Rah - I'm about 2.5 years in on Tamoxifen and can't wait to reach that 5 year mark as well!
Keeping up with my "paw family" tradition, here are Domino and Finley. I'm glad Finley had a couple years where he could learn a lot from Domino.
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Those puppies are just the sweetest. Pebbles I have this little dream about getting one or two of my own and coming to visit you and get oriented in the ways of dogs myself while my puppies get to learn from Finley in the tradition of Domino, Kit Kat, and Tucker.
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Arvla, sorry you have to deal with this! Sometimes it feels like the fun never ends. I don't know if it's necessarily that your dose is too high, bodies just respond to stuff differently. I don't know if thickened lining itself is a problem, but wired zombie is definitely a problem!
I am like the poster child for tamoxifen trouble shooting so I am here to cheer you on for whatever you want to do/try to find something that works for your life!!
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Thanks so much to everyone who responded and for all the encouragement. I'm waiting for my MO to return from vacation, but I spoke to another MO who I periodically consult with and he suggested that I move off of tamoxifen to Evista given that my uterine lining became so thickened so quickly. I asked him about the fact that the Evista label indicates that it is only for post-menopausal women (I'm 39 and premenopausal), and he said it is used off-label in the premenopausal population. He said it behaves in a similar manner to tamoxifen but without the stimulation of the uterus or the CYP2D6 metabolism issue (if I could take benadryl again I would be so happy!!). Has anyone else had experience with Evista in the premenopausal context?
One thing that frustrates me a bit is that I spoke with one gyn-oncologist who I consulted with after diagnosis about ovarian suppression. He repeated all the common facts that we know - tamoxifen is known to stimulate the uterus, premenopausal women have a thicker lining to begin with, etc. - but suggested that I should get a D&C and endometrial biopsy to be "1000% sure that nothing more is wrong." I'm all for taking the most aggressive approach possible, but that seems a little extreme to me when my TVUS pre-tamoxifen was normal. I'm also weary of an invasive procedure like that - given my tamoxifen use, the TVUS was much more painful than normal and I can't imagine tissue sampling is a picnic! I'm considering suggesting that we do the switch to Evista and see if my lining comes down in a month, but don't want to be too cavalier either. Any advice folks have would be much appreciated.
It's just all very frustrating. I've really tried hard to power through tamoxifen - between the insomnia, hot flashes, weight gain, bloating, migraines at the beginning - but I didn't anticipate needing to get my uterus scraped or another biopsy. Sorry for the complaints, I just feel a bit overwhelmed.
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“He said it behaves in a similar manner to tamoxifen but without the stimulation of the uterus or the CYP2D6 metabolism issue (if I could take benadryl again I would be so happy!!).“
What is this all about!?!?! I depend on benedryl or low dose doxepin for sleep! Nothing else can get me close to six hours a night! I’m supposed to start Tamoxifen after surgery, argh
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Waves2Stars, the bad news is that Benadryl interferes with the action of Tamoxifen so it should not be taken while on T. Sounds like it is time for a discussion with your prescriber. There are other options available and you have some time yet to make a decision. Best wishes as you move forward with treatment. When is your surgery?
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