Bottle 'o Tamoxifen

Jennie93

Hi Lolis, yes, joint pain and stiffness is unfortunately a well known SE of tamoxifen. Not as common with tamoxifen as with the AIs but it does happen. It got so bad for me that I had to quit, but it was a gradual progression. Some pain after 6 months, lots of pain after 12 months. My onc put me on high dose vitamin D and that did help some. Most docs will deny that it's caused by tamoxifen until it gets unbearable.

ang7894

Yes!!  Mine got worse over time I just quit Feb 17th 2015 After 2 1/2 years on it.  Joint pain, stiffness when getting up from bed ,couch,

low or NO libido... Sex what sex to tired or when we tried it got painful. weight gain 30lbs after I started it. the list was getting more and more so my doc gave me the ok to quit.  She said a lot of woman quit after the first month she said I did well for 2 1/2 years .

FYI the first few months no trouble ..   

Lolis197138

Oh man, I thought my body was already used to tamoxifen by now. It's been 7months now. I had the joint pain and muscles pain the first two months and then it disappeared. 

The sex was getting so painful but it seems to be getting better now. I don't see my MO until June!!!

This afternoon I started having shoulder/neck pain (on the left side). Anyone has tried accupunture? Does it help? 

IDartist

Lolis, I started taking Tamoxifen in September 2012 at age 43 and didn't really have many SE's at first, just some minor HF's and some minor joint/muscle aches. In July 2013 I had a total hysterectomy which disrupted my world much more so than my BM ever could. The intense HF's started within a week and I would have 5 or more of these within 1 hour! The HF's continued for over 1 year along with weight gain, painful sex, depression, mood swings, food cravings, sleep issues, feeling like a prune. I watched myself grow out of my clothes (even with a good diet and exercise), but made it through the most difficult part. Now I have achy joints in my hands, wrists, knees, ankles and toes but mostly hands, wrists and elbows. This comes and goes but seems more common in the winter months and extreme cold. My Oncologist said at my 5 yr mark, she may recommend I continue with Tamoxifen for another 5 years because of my age, family history of BC, and the characteristics of my cancer being 100% ER+/PR+/HER-. I almost croaked but as my husband always reminds me, it beats the alternative ...... Having the cancer come back. But I do struggle with the aches and pains this has caused in my life and if it will possibly extend my life, I will deal with the SE's.

I have never had acupuncture but I have started treating myself to a monthly 1 hr massage to help with tension in my neck and shoulders.

nancybel

I've been on Tamoxifen for 6 months now, with some side effects, like the severe hot flashes and lack of sex drive. Effexor has helped with the hot flashes.

Lolis, I too have started noticing joint pain in my hands, fingers and ankles.

KKay 5525, I also have the extreme dry mouth, to the point it wakes me up at night. I use Biotin mouthwash and that helps, as does the spray for throughout the day.

Hopefully things get better soon for all of us. I think we deserve a break.

KKay5525

Thanks nancybel, I will try the Biotin and see if that helps. Hopefully that is all the SE I will have.

Kay

lala1

Try ginger and Gaia Turmeic for your joint pain. MIne was really severe until I got on these 2 supplements. 95% of my pain gone within 2 weeks!

Anyone tried Peridin-C for hot flashes? My gyn suggested it but I can't reach my MO to see if he's ok with me taking it with Tamoxifen.

Scottiemom11

MO upped my Gabapentin today, so hopefully it'll knock out the HFs and the nerve pain once and for all. Both we're better initially when I first started the Gabapentin but then SEs came back. Maybe more because of the lupron then the Tamox. Either way keeping fingers crossed that I sleep through the night for once.

Scottie

ChristyJ

I thought I was prepared, but I wasn't really prepared. I saw my doctor this afternoon and found out about the cyst. It's 2 1/2 cm on my right ovary, the cyst isn't just fluid-filled, there's something else in it, and that's the primary concern. My CA 125 number was 34 and 35 is the max amount they want to see for the normal range. It's likely fine; I'm likely fine. BUT, because I'm already having surgery to remove my tubes, he's going to remove the cyst and ovary, then biopsy everything he takes out including the tubes. If I weren't having the surgery, they'd monitor the cyst by having me have another ultrasound in a month. And if there were changes, the end result could be surgery, so it's logical to do it all at once. But, damn.

I won't need hormones. He says one ovary works as well as two. The incision will be slightly larger and it will be a slightly longer recovery.

JWoo

Hello ladies,

ChristyJ- sorry to hear your news.

Just wanted to drop in and share this thread with you: https://community.breastcancer.org/forum/78/topic/829343?page=1#post_4329036

I started it because my MO wants me to consider the SOFT study and possibly change to an AI+OS from Tamoxifen. It is a lot of info, and a big decision to make. If any of you are in the same boat, or have already switched over, I would love it if you shared your thoughts.

Thanks!

jeni

Stenokim

Jwoo, my onc wants me to do the same. I'm not too thrilled about it. Im 49, now post menopausal and have very few problems with tamoxifen, so I'm not too anxious to switch. I

Sjacobs146

does anyone know why hot flashes seem to occur mainly at night?

Lolis197138

Jwoo - I have been thinking if I should be switched to OS however I am currently in menopause and don't know if it would benefit me now. Also, my MO didn't seem in a hurry to switch me in December when I last saw her. She might change her mind in June. 

I am not sure if I want to switch as I don't know how the SEs from the OS would differ from tamoxifen. 

Sjacobs - that's a good question. I don't if the reason of a hot flash is known. Mine are more frequent during the day although I have at least 2-3 a night.

Do any of you on Tamoxifen have any cramps? 

gemini4

hi Lolis, by cramps are you talking about muscle cramps? If so, yes I have had foot and calf muscle cramps intermittently. I take magnesium every once in a while, and it does seem to help. I take it in a powdered drink form called "natural Calm". It was recommended by another BCO poster, and I ordered it from Vitacost (it's also available at Amazon).

ChristyJ

My surgery on Monday went well, and my doctor feels like the cyst is okay. Yesterday was kinda rough physically-I was definitely sorer than I thought I would be. One of my incisions was still bleeding a tiny bit, so that had me kinda worried, but it's fine now. They ended up taking out both tubes and my right ovary with the cyst. They're doing a biopsy, but again, my doctor says he thinks everything will be fine.

I'm off my Tamoxifen still and was told to start it back up on Monday. I'll have been off it for 2 weeks. Anyone who's gone off it and back on for that short of a time period, did you end up re-experiencing side effects? I'm really hoping not.

lala1

I was off my Tamoxifen for 3 weeks and my few side effects came back but I don't think as bad. I had some nausea and dizziness as well as muscle/joint pain. The nausea and dizziness are gone but that may be due to having my ovarian cysts and fibroids gone with my hysterectomy. The joint/muscle pain came back a bit less but I just resumed my turmeric and ginger and it's all gone again. That's the only thing that keeps that pain away. (Well, along with magnesium but I never stopped the magnesium for surgery and the pain came back, so I assume the turmeric and ginger are what does the most work!)

Lolis197138

I meant cramps like menstrual cramps but lighter. I keep having them and no period.

Chrissy glad to hear that the surgery went well

Juliecc

Lolis, I've been feeling menstrual like cramps for the last 3 weeks or so. If it persists, I think I'll make an appointment with my gynecologist. I've been on tamoxifen for 11 months and still get periods. They come every 35-45 days. When I first started the tamoxifen, I asked for a baseline vaginal ultrasound and Kaiser told me no. They said they would only do that if I had unexpected bleeding.

Libby1223

I know if Iooked through the whole thread I'd find the answers, but how long does it take for your side effects to start?

lala1

Juliecc--I had to ask for a baseline TVUS. I had been on Tamoxifen for 15 months at the time. My gyn said it wasn't necessary since I wasn't having any unusual bleeding or any other symptoms but she agreed to do it. Suddenly, I'm being told I need a hysterectomy! My TVUS showed ovarian cysts, fibroids, enlarged uterus and thickened endo lining, all of which could be attributed to the Tamoxifen. She was a little too eager to do the surgery so I got a second opinion. He did another US and suggested a little watchful waiting with periodic ultrasounds. I went another 6 months but my lining was getting too thick and the cysts larger so I had a lap hysterectomy with ovary removal in Jan. I feel fantastic despite having a couple of minor hot flashes at night. I'm really glad I insisted on the ultrasound. We really have to advocate for ourselves. It's unlikely they will find anything but having the baseline is the whole point. Tamoxifen is known to affect the reproductive organs and we really should have that baseline. I also insisted on a baseline bone density test for the same reason. I am 51 and want to be sure I'm doing all I can to be proactive.

uds17

Hi ladies,

I saw my oncologist and gynae this week and am scheduled to have a total hysterectomy next month. Chemo put me in menopause, but my gynae thinks there's "some life left in my ovaries". I decided for a number of reasons to do a surgical approach rather than OS. Onco wants me to continue with tamoxifen after surgery since I've only been taking it for a yr.

I've been having a ton of hot flashes since chemo and these haven't really worsened since tamoxifen. I've also been super dry down south. My question is, for those of you who have had similar situations, did the oophorectomy worsen the dryness and hot flashes?

Thanks!

Juliecc

Thanks lala. I might need to raise a fuss.

lala1

My hot flashes are a little bit worse but still bearable. Fortunately I don't have a dryness issue. Actually quite the opposite! Tamoxifen is known for causing discharge which is my problem. Rather have that than the dryness!!

Stenokim

lolis, I have been getting crampiness, more like ovulating pain where my ovaries are, however I'm post menopause. After hearing so many of us have this, I'm not going to worry about it, I guess. I do get mild calf cramps also, mainly at night in bed. Tolerable though. Kim.

Annie88

Hello ladies! I started taking my Tamoxifen about two weeks ago. How long until the side effects arouse for most of you? I have had some headaches, which are here and there.

uds17

Thanks lala1!

I agree with you - the discharge be much better than the dryness. Hopefully, I'll be lucky enough to get that side effect after surgery! ☺

ndgrrl

Hi- I had surgery to remove my tubes ovaries and fix quite a few it turned out small hernias. Got out of the hospital on Friday and feeling ok, but sore from the big abdominal surgery. I had what the surgeon called swiss cheese hernias on my old incision.  I was taken off Tamoxifen for a week before surgery and will be put on an Al in a month. Not sure I want to do that as I had minimal side effects on Tamoxifen.  I did have night warm ups, someone asked about those and that is what I get, not hot flashes during the day but warm ups at night so that I sleep with a fan on. Nothing really has changed in that dept. I am also very worried about it changing " down there" as I have not had problems with Tamoxifen. I kept ovulating on Tamoxifen which caused the ovaries to grow large and cause pain. 

 

Mommado

I've been on Tamoxifen since March 2012 and have had all the "fun" side effects - hot flashes, leg cramps, you name it.  Recently I've been having horrible cramping (mentrual) I haven't had pain like this since I had my ablation in 2009.  I've been a bit nervous about uterine cancer (my mom's sister - my aunt) passed from it in 1993 and I know that after an ablation it can be very difficult to diagnose because there are no symptoms as you have no bleeding after an ablation.  I recently had a very bad ovary cyst burst and the ultra sound after it showed I had another on the other ovary and I swear I had another on the same ovary just not as bad burst.  Anyone have the problems or have suggestions of what to do?  I see my Onco on April 8th ( my cancer may be back - I have my 6mth follow up on a lump that was too small to check before)  Do you think this is something to worry about or just a part of aging and Tamoxifen?

Thanks

Stacie13

Is anyone having complications with other meds and tamoxifen?  I have daily chronic migraines, finally after years of trying different preventive meds and pain meds my migraine have been reduce to just 2 or 3 a week. I also have epilepsy, 2 different types of seizures. My migraine meds reduces the effects of tamoxifen, so I had to go off of that. Now I'm playing the migraine med game again trying to find relief. I had blood work a few weeks ago for my seizure meds and my seizure threshold is way down due to tamoxifen. I'm also anemic and have very low B12 count.

My doctors want me to stay on tamoxifen and keep looking for "better" meds for my other issues. ***sigh....

bgail84

Have been on Tamoxifen since July 2014 and developed severe itching about 2 weeks later. It only occurs after a bath and usually takes at 30 minutes to clam down. I was on Aromasin for two years and the joint pain was horrible. Has anyone else has the itching? My BS wants me to do at least two years on Tamoxifen maybe 10. I don't think I can go that long. Am taking a 4 week break to see if itching settles down. Other side effects for me are no sex drive and the dryness. Nothing seems to help with that. Any suggestions for the itching? I use only warm water, nothing hot and apply oil but still itch for at least 30 minutes. Thanks.