Bottle o Tamoxifen
Comments
-
Hi Buttercup. I’ve been on tamoxifen for six years and the joint pain can be so bad at times I can’t move. What I find helps is a warm bath with Epsom salts. I still have 4 years to go and every time I ask my MO what I can do for the pain (OTCs don’t really help and I don’t want Rx pain meds and I can’t live in a bathtub as nice as that would be) she tells me that tamoxifen doesn’t cause joint pain 😳 WTF!! Does anyone else’s dr tell them that? I Amat the point where I want to get a card to go to a dispensary to get CBD oil in a lotion.
As for the eyes I did my chemo in 2012 and by 2016 I had double cataract surgery. That helped my vision but I am noticing a decline again. My dr confirmed that not only do the high doses of steroids we have to take during chemo affect our eyes but it’s right in the information about this drug that it will cause vision problems. I guess I can’t expect something that could potentially help me avoid a recurrence would be side effect free.
Hang in there ladies. The only upside I can share is we won’t be in this forever!
Karen
0 -
Karen- your doc is splitting hairs...low estrogen causes joint pain. Joint pain is not listed as an official side effect of tamoxifen. There’s a fine line between absolute side effect of a medication and the side effects that result from what the drug does. So blocking estrogen doesn’t cause joint pain but not having enough estrogen activity in specific cells/tissues does.
0 -
Hi Ladies
I've been on Tamox for a little over a year. I can handle the joint pain, the hot flashes, the leg cramps (which have actually lessened since I started taking magnesium and a multivitaimn more regularly). I have even been ignoring the fact that I now have vaginal atrophy which makes sex very painful. But .I have, been having "suspicious" thickening of my uterine lining and more blood to my uterus("hyperascularity"), plus, for the second time since on Tamox, an ultrasound has shown that I have ovarian cysts (the earlier one resolved but now I have again). , I've had 2 uterine biopsies so far, both negative and one scheduled again for November b/c I keep having periods (which the doc always wants to check out b/c I'm on Tamox). And the ultrasound showed thickening lining. Although I have a history of depression, it hasn't caused a problem for me, (maybe becuae I'm on antidepressants). I haven't yet gone fully into menopause, so I'm not sure my oncologist would consider switching me to AIs but I'm terrified of the joint pain and osteoporosis effects of AIs. AND, like I said, my vagina is totally fried (but that's a problem with both Tamox and AIs I gather). I wish there was another alternative to Tamoxofen and AIs....
Scrafgirl, interesting to read what you said about AIs linked to increased BC risk for pre-menopausal. Hmm.
0 -
Also PrincessButtercup , I noticed that my joint pain was reduced when I focused on strenghening my muscles around the joints where I had pain (my knees). Also, rolling on the foam roller up and down my thighs was recommended by my personal trainer for helping with the joint pain--she said it's b/c it helps the muscle around the joint to work betterr--I did find that to be helpful.
0 -
Thank you, Minute, Lula, and KarenZ. The recent exercise studies are motivating me to walk, but the pain is becoming unmanageable. My MO also suggested fish oil, so that's my next step!
0 -
MinuteAtATime, you made me chuckle on the vagina being fried. I have the atrophy and hurts with sex, was using estrace cream but stopped when I was diagnosed with the breast cancer.
I also think our age is dependent on how we react to the tamoxifen. I am 64, past menopause, but taking the tamoxifen I rarely have the hot flashes.
0 -
Princess - I am, or should I say was, an avid runner. For me, even walking makes my joint/muscle pain worse. I also find that if I tweak a muscle it takes weeks to feel better, when it used to be days.
I’ve tried many natural remedies but nothing is working. I’ve really been avoiding getting a prescription for whatever can help, but I’m getting desperate.
I can have weeks where the aching is minimal, but then something triggers everything to hurt. Sometimes I think maybe I have fibromyalgia, which I’ve read about being a result of cancer treatments in some cases. It’s all very frustrating and depressing.
I’ve been on tamoxifen since March of this year.
I hope you feel better soon
0 -
I have been on Tamoxifen since February 2015. The joint pain did not start to get really bad until last month. All along I have had hot flashes; muscle cramps at night and a bloated belly. Anyone else have the bloated belly? My eyesight has been declining year upon year. I need to get new prescription glasses and a thorough eye exam. I typed in foot pain and I am ever so glad I found this thread. The weather change last month caused my whole body to hurt so badly I could cry. I found 800 mg ibuprofen {old rx I had saved} and a hot shower to help alongside rest under the blankets. Someday's my whole skeleton hurts but mostly my hands. Lately I have been having severe left foot pain. I am a massage therapist and stand hour upon hour. My foot is very stiff. After a day of work it hurts so bad that any attempt to move it left or right while laying down for sleep is excruciating. I called my oncologist and she said it was not an SE of Tamoxifen. I think the lady that wrote here that technically it is a lack of estrogen causing the joint pain not the estrogen blocking of the Tamoxifen is correct yet we all know it is the Tamoxifen indirectly. In December I am finally having my ovaries; uterus and cervix out. My oncologist has wanted them out since dx but a lumpectomy then mastectomy then 4 reconstruction surgeries made it impossible at the time. I am getting everything out. The Tamoxifen has caused one uterine fibroid to grow as big as a tangerine. I feel for the gal that has to have uterine and endometrial biopsies. I found of all the gynological procedures the endometrial biopsy is the worst. Absolutely very painful. I suspect when I go to the oncologist mid month she will start me on AIs because my OBGYN tested my hormones and I am now menopausal. I am not looking forward to it as all I hear is that AIs are very taxing on the system. They cause Worse joint pain. I did all that breast surgery then started having gall bladder problems. I had that removed in June. I am having vagina issues too. Sex has become painful. I use cbd oil on my right knee as it needs to be replaced and it really does more to help than steroid shots or the knee brace I have. I went from a speed walker and work out Queen to an achey old women. From 46 yrs old to 80 like others on here say. It is very hard somedays. I am also supposed to be on Tamox or whatever AI they put me on soon for 10 years. I am on year 4 and I cant imagine being anymore stiff or feeling older.
0 -
Bcky- I sometimes get a bloated belly at night - never had this before.
Well my MO actually told me to take a three week break from tamoxifen- I am shocked. She said that I never complain about anything, so it must be bad.
I save all my whining for here!
I had a lot of muscle and joint issues from chemo, specifically Taxol, and I agree that some of my issues may still be related to that.
Fingers crossed I see an improvement and then can get started on it again with a plan in place to alleviate SEs.
0 -
I always read along but rarely post. I have a few minutes and thought I would actually post something. My eyes have been hurting for what seems like the entire time I have been on Tamoxifen. I finally found time to get them checked. When I mentioned that I was on Tamoxifen when I made the appointment they wanted to see me the next day. The doctor had concerns because Tamoxifen build up on the eye. You all understand that I can't remember exactly what because I can't rememberanything anymore! Anyway, no issue with that but my vision is declining some which can be "a natural age thing". The doctor also said anyone who is on Tamoxifen needs yearly eye exams and more frequent than that if there is a problem.
Yesterday while delivering Meals on Wheels one of my favorite clients said "I didn't know you had a mustache." WHAT THE HELL?!? I had no clue I was getting a little peach fuzz on my upper lip! An elderly man saw it but I didn't! Anyway, that fuzz is gone now!! #Tamoxifensucks #nolipfuzz4me
0 -
VL12 Yes. I am thinking Ibuprofen is a drug I am not supposed to mix with Tamoxifen. I am sure I was told that by my oncologist. It nullifies the effect of Tamoxifen I think. Yet I am told we have so much built up in our system that if we need to take a break it is ok. I have always been instructed before surgery to stop taking it a few days before and after because of risks of blood clots.
Vargadoll Yeah I got those thick hairs that one of the ladies was talking about in this thread. They are worse than moustache fuzz. They are the guitar like ones that will not budge for me without a plucker and like the other gal says I usually find them while driving on my way to work etc. LOL
I will get my eyes checked soon. Thanks.
0 -
Bcky--I had a total hysterectomy 2 years into Tamoxifen and stayed on it throughout my 5 years. You don't HAVE to swap to an AI if you don't want to. My BS said I would only see about a 1% improvement in my recurrence rate and that he's not convinced an AI is worth it for some gals who are lower stage and grade. And just FYI, I found the surgery to be a breeze and recovery even easier. I immediately felt better, especially since the bloating part went away. I definitely found the hysterectomy to overall make me feel much better.
And Vargadoll--I was about 6 months into Tamoxifen when my SIL asked me if I'd like to "accompany" her on her visit to get her lip hair removed. It wasn't until I was there that I realized she made an appointment for me too!! Needless to say, I got a monthly wax for my whole Tamoxifen journey. Now being almost a year off, that lovely SE seems to have gone away if that helps you any!
0 -
Hey ladies with sex issues, check out Pure Romance. I use there creams and they are amazing. Really help
0 -
I use something called VMagic for vaginal dryness, suggested by my GYN. It definitely works, but you have to use it every day, which is fine because it is all natural and very soothing. A definite improvement during sex.
0 -
Anyone with bladder control issues on tamoxifen? I don't see this discussed. Or perhaps I am the only one!
Thanks,
Buttercup0 -
Buttercup, You are most definitely not alone! Not only have I seen others mention that but also when I need to go I really need to go. When I had a hysterectomy a few months ago my surgeon, who is a uro-gynecologist, also checked my bladder while I was anesthetized and reported everything looked normal so I can't t blame it on having an old bladder! The urgency also seems to have increased on Tamoxifen, but for me it's a small price to pay to prevent a recurrence. I try to pay close attention to the signals but some days even that does not fully prevent " accidents". Thank goodness for good panty liners. Suspect the urgency is related, at least in part, to the amount of water I'm drinking to avoid constipation -- at least that is working!
0 -
Beaver,
I'm definitely not considering stopping tamoxifen. But this is more than a minor inconvenience, and clearly tamoxifen-related since the problems began after I started Tamoxifen. Something to talk about at my next appointment!
Thanks,
Buttercup0 -
Good news to report I got my MRI results and everything came back clear and normal! So happy!!
I see my GYN on Wed to go over my pelvic US results. Hope for more good news on that front.
Wishing everyone well.
Hugs,
Sara
0 -
That's fantastic new Sara, so very happy for you!!!!
0 -
thank you Cheryl! How have you been doing? Any Improvement and how are your boys doing.
Wishing you well hugs,
Sara
0 -
Excellent news sm627!
But GRRR to the article listed on the opening page of this site saying that young women are not adhering to their hormonal therapies. It says that blood tests show lower than expected levels of tamoxifen in a percentage of women. Lower than expected? What level were you expecting? (not included) What level of tamoxifen must be present in the body for it to be effective? (not included). It seems to me this is pertinent information and shockingly, it's not included in the article.
Article went on to say that some women find the side effects 'troublesome'. Troublesome. Oh bother, oh dear me ( fluttering eyelashes and gentle hand across the brow) I find these here little flashes of heat a wee bit troublesome. WRONG! It's troublesome when there is a hair in your shirt tickling you. But let's not use such a dismissive word to describe some of the outright misery that we can have on this drug! Maybe the words miserable, intolerable, seriously shitty would give more weight and acknowledgement to the situation. But there is a tone to the word troublesome that I find deeply offensive. When I am flailing around the house at 2 am, doubled over as my upper thigh seizes up and tries to peel off my body for 10 minutes while I gasp and cry in agony.... troublesome my ass.
0 -
Well said, Runor.
0 -
@lula73, my MO said I have to get off Wellbutrin bc it inhibits CYP2D6 enzyme......I have been prescribed tamoxifen and I’m recovering from expander removal surgery (to go flat) so I neeeeeed to find a psychiatrist who can help me with the taper, but.......does your MO know something mine doesn’t? (You May be in the UK or canada, both of which are ahead of us in Amurrica.
0 -
new to this group, obsessively worrying about stopping Wellbutrin in order to go on tamoxifen, and reading the last couple pages of posts: Has anyone thought about what drugs might be available if the selection of meds made men’s penises have the symptoms of vaginalatrophy (I’m not talking about erectile dysfunction, they already have a pill for that) and their joints hurt so much they couldn’t put pressure on their knees for sex? We deserve better.
0 -
ashweb901 I believe Effexor is acceptable while on Tamoxifen
0 -
thanks https://community.breastcancer.org/member/262919/profile ! I take Effexor and Wellbutrin. Started prozac 1999 after two years of postpartum depression. 9 years later Wellbutrin was added to boost it. 8 years after that my brain nearly ground to a halt, with panic attacks and depression, shaky hands, slowed thinking....and a switch to Effexor brought my brain back. But my Psychiatrist, who closed her practice and moved to Cali this year, never took me off Wellbutrin. So I need to taper off Wellbutrin or I risk compromising the effectiveness of Tamoxifen.
Any NASHVILLE members on this thread....know any good psychiatrists? My MO had zero suggestions (unless you count telling me to ask my GP). Can't believe the prestigious Vanderbilt doesn't have a psychiatrist to care for its breast cancer patients.
0 -
Hi vampeyes,
Day 3 for me off Tomaxifen and no bleeding so far. I keep checking to see. Have been on Tomaxifen it for 4 months.
0 -
Morning Veeder - how are the SE's now, noticing any difference?
0 -
Hi Everyone,
Happy weekend! I hope your SE were not to horrible this week.
Runor: I feel very frustrated as well about the article on the front page of BC.org regarding younger women not sticking to there hormonal treatment plan. Thank you for reading it so carefully and pointing out the loop hole within the study. I also noticed that the study was posted in the younger women with BC forum I don't think it should be there. It would be nice to read something a little more encouraging like the best ways to deal with these difficult side effects so you can stay on your HT.
Ashweb: Sorry to hear about all that you are going through that is so frustrating. I agree with you I think all cancer centers should have some psychiatrist care for cancer patients to help with the healing process. I think cancer in general does more harm to our mind and soul and having someone to talk things through is a must. Wishing you well in your search for a new therapist.
Okay so I have more news to report. I got the results back from my pelvic ultrasound everything came back good expect for two ovarian cyst one on each ovary(Thanks Tamoxifen). My GYN and MO are playing phone tag trying to figure out weather I should get a annual pelvic ultrasound(recommended by my GYN) or a pelvic exam which is what my MO said to do. It has been almost a month and I haven't heard back from anyone. Next week I plan to call both of them and find out what is going on.
What do you all have done pelvic exams or pelvic ultrasound?
I wouldn't mind having the pelvic US since it give a better picture of what is going on.
The MO nurse at the cancer center I go to is having me try Relizen for hot flashes has anyone else tried this and how has it worked for you? MO nurse said it is a non hormonal natural supplement from a plant that is grown in Sweden.
Hugs to all,
Sara
0 -
Sm627 that is good news that most of your pelvic ultrasound was normal. I too had an ultrasound within two months of starting Tamox and also have a cyst on one ovary. My gyn isn't that interested in doing annual US but I am. I will push as hard as I need to because I want to keep an eye on how my body is managing things. It is such an unobtrusive exam, why not? Let us know how the Relizen works. I am struggling with the hot flashes. On a good night it is waking up 3-4 times to turn on my little bedside fan. On a rough night, it is 6-8 times. So a little relief would be welcome, just not ready to start the Efflexor train yet. I have this abhorrence about taking a medication to reduce side effects of another call me crazy.
0
