Bottle 'o Tamoxifen

molliefish

wow Cid! Great job taking control. Very happy for you.

Wendy3

Cid I would have to agree I think the oncologist mean well for the most part. But what they give us does not necessarily make us better. Also unfortunately many are motivated by money. Seeking an alternative solution is great. 

gemini4

keepwalking, I wonder the same, if some of the weight gain is water retention. I have an issue with puffy fingers and feet that hasn't happened since pregnancy.

I also wonder if some weight gain is from an increase in bone density?! Apparently tamoxifen is beneficial to bone health. I have never had a bone density scan, so I personally have no way of measuring any change. Has anyone heard anything about my theory?

I have gained 25 pounds since I started tamoxifen nearly three years ago. My kitchen no doubt is mostly to blame. I'm starting to drop some pounds since starting WW and cutting way back on carbs at the beginning of January.

Trvler

I am 52 now but about 2 years ago, I gained about 10 pounds. Although I was premenopausal, I think you can gain some weight around that time anyway so hard to say if it is Tamoxifen or not.

gemini4

A tip for those of you who have trouble remembering to take your daily tamoxifen pill -- get one of those plastic daily pill sorter compacts.

I wish my pills came in one of those blister dial packs, similar to birth control pill packaging. I have seen photos of tamoxifen like this, but maybe that was the fancy non-generic brand.

keepwalking

gemini4 - I have read research reports to the effect that tamoxifen can increase bone density in post-menopausal women. I was wishing that was the case for me (but probably silly to have expected that after only 2 weeks!). However, that idea went away when I promptly lost the weight again on the 2-weeks break from tam. Now I have been back on for a week. I don't see any weight gain on the scale, but I am also having low appetite right now because of the rads. My fingers do feel puffier again.

gemini4

keepwalking, have you considered acupuncture to help with your side effects of rads? I had treatments along with doing qi gong (similar to tai chi) during my six weeks of rads. Really felt it made a difference. Right away at the start of rads treatment, I felt queasy and (for lack of a better term) cooked! Acupuncture and qi gong took care of that and kept my energy level up. And I greatly increased my water intake.

molliefish

Day 11 from what I can tell. Nothing to report. Have faith my friends. All will be well.

TinyDancer5

Day 4 for me and so far I'm ok

Trvler

I am on Day 22 and still having chills but again, that started before the big T. Has anyone else noticed that after chemopause and T, they feel less moody?

Scottiemom11

I have been on Tamoxifen for 13 months now. I go from freezing cold to dry burning hot. Some of these effects are no doubt residual from the lupron I was on since I have only been off that for 6 weeks. My hot flashes seem worse at night when dose is wearing off. Has anyone had success in taking 1/2 dose twice daily with less effects?

Scottie

ctgal48

I am still on the fence about starting tamoxifen. Did your doctor order any tests before you started taking it? I made an appointment to see my internal medicine doctor to have blood work and a bone density test done. I am also thinking about seeing a second MO just to get another opinion about starting this medication. I guess I just don't have confidence in her. When I asked her about the Oncotype test she told me it was only to see if chemo would be needed. I know from reading this board that many of you with a DCIS diagnosis have had the test done and received a recurrence score. Your opinions appreciated.

Jabe

I start Tamoxifen tomorrow and am really nervous--incontinence? Nausea? I had a really, really tough pregnancy with nausea ten years ago. I can't do that again. Also, I noticed some of you take it at night. Suggestions for when best to take it? I usually take my meds with breakfast but if it's better to take at night please do tell!!!

BBwithBC45

Jabe, you won't necessarily get nausea. It seems that everyone gets different kind of SEs and some get barely any. I had a very bad nausea throughout my chemo and for a couple of months afterwards. I have been on Tamoxifen for 6 months or so and I do not experience nausea. I take mine right after dinner, so I'm sure my stomach won't get upset this way.

Trvler

And don't assume if you get it, it will last forever. I had very mild nausea for about 2 days.

Jabe

---

Thank you trvler! Is there a reason for taking it at night instead of in the morning after a meal?

RobinLK

I take mine in the morning so I can split up the number of meds I take in the am and pm. No medical reason, just preference.

CTgal - a second opinion is always a good thing, if you are unsure. We all need to be our own advocates. It could be that your ER+ percentage is very high, and in that case, hormonal meds are usually used for 5-10 years. I did not fit into the category for getting an oncoscore, but my MO did talk about recurrence numbers when we decided on my treatment options. If you are premenopausal, tamoxifen is the med available, there is also ovarian suppression and AI, ovarian suppression and tamoxifen or oopherectomy and the meds. Post menopausal is AI or tamoxifen. The bone density test will help determine which is best. AI = bone loss possibility. Tamoxifen = bone building possibility.

rleepac

My gyn also wanted a baseline pelvic ultrasound before starting Tamoxifen. She said it was just in case there a problems later, she will have something to compare it to

jbokland

Tamoxifen has a tendency to thicken the uterine lining. It happened to me after 6 months and we did a biopsy to make sure it was truly benign. Phew! It was

Tresjoli2

I take mine at night so my hot flashes are while I am sleeping. :-) I don't have many. The big issue for me I think is forced menopause at 40. My joints hurt and I feel like I aged dramatically, and I'm still chasing around a 3yo.

Dakjo

I take my pill in the morning and never felt nauseous from it. The pelvic ultrasound (as a baseline) is a good idea. My gyn did the same. I had some endometrial lining thickening, had tested and thankfully it was benign.

lala1

I had a thickened lining that we watched over the course of 8 months. It gradually got thicker till I finally opted for a hysterectomy. Feel much better despite a couple of hot flashes at night. But I was 51 and perimenopausal when I did the surgery so maybe that made it a little easier.

Scottiemom11

I'm on Tamoxifen because I am very ER+ and was pre-menapausal,. I did several rounds of lupron which put me in menapause, but had to stop due to side effects. So I'll have to wait and see if my cycles return. I had baseline ultrasound and am scheduled for a baseline bone density scan.

For those with joint aches. . .I take a host of supplements such as calcium, glucosamile, zinc, probiotics and magnesium. All of these are cleared with MO and help. I am also on gabapentin for continued nerve pain, but it helps with the hot flashes so that's an added bonus.

I am still considering splitting my Tamoxifen dose so I can take morning and bedtime. My worst hot flashes occur at night when dose is wearing off.

Scottie

lala1

I feel that the turmeric and ginger do the most for my joint pain. They've just released some new studies showing these 2 supplements may be more effective than arthritis meds. And I recently started olive leaf extract at the suggestion of my holistic doc. I seem to have never ending sinus issues that started about a year after I started Tamoxifen. It's been about 3 weeks and I can already tell a difference. Nothing like taking things to combat the SEs of things you are taking!!

Trvler

I take mine in the morning after breakfast. My hot flashes are mild.

Scottiemom11

lala. . .I'm looking in to turmeric but have to clear it with MO because I'm very hormore positive and info online says turmeric may mimic hormones and/or reduce effectiveness of Tamoxifen in some women.

Scottie

Jabe

thanks all! I'll try in the morning and go from there

ayr1016

Scottiemom11 I just saw my MO for the 1st time this past Friday. I am 100% for ER and PR, so I will definitely be taking Tamoxifen. We are waiting for something to decide to take it before surgery or start after. I have been taking Turmeric for almost 2 weeks now and she told me to stop immediately because of it interfering with the Tam. I am bummed because I was excited about the anti-inflammatory effects that Turmeric is suppose to have. But, I will trust her that I need to stop taking them. I wish there was more evidence of if it does or does not interfere with it.

I am scared as heck about taking an anti-hormone pill. I asked my mom today how her menopause was for her and she said she had mild hot flashes during the night, but that is it. I am 41, and will be taking Tam + probably Lupron. I am currently on Zoloft. But, I had already read that it interferes with Tam, so my MO is weaning me off that and onto Celexa. She said that Celexa would help with my hot flashes and menopause symptoms. Anybody else take that and have feedback to give? I have been taking Ativan to get to sleep at night, but she prescribed Lunesta for that.

Anyhow, it is official, I will be joining you all with this little white pill in the near future! Will be reading this thread like a hawk

MomOfTwins98

Good Morning All

I too have nausea...it comes and goes throughout the day. I was told by the care navigation nurse at our cancer center to take the Tamoxifen at night as it tends to be less intrusive while you sleep - Not sure if it is true but that is what I did - I take it at 5pm before dinner. I keep a clear daily pill box so I do not forget. I also take Gabapaentin for pretty severe pains that was suggested by a rheumatologist. A large ovarian cyst was found on my right ovary that is attributed to the Tamox by my OB but my MO said there is no way it is responsible - either way, it was there. Just had a 2nd follow-up ultrasound last night to check it and I wait for results. Also started some rectal bleeding on Friday so that is going to be followed up with next week after I panicked and was seen yesterday (Saturday morning by a physician covering at my primary's office) - They want a Colonoscopy and Endoscopy - gee, fun. I do get lots of joint pain and aches but feel strongly that, if the Tamox keeps the cancer away, I'll do it. I'm 49 and have been on it for 8 weeks and, since then, got my period three times - sort of funny as they told me that would stop- go figure. It is an individual decision but I have read so much and asked many questions - The Tamox is what is available and it is supposed to work, SE and all. I also get really cold at night, especially, but use a heated throw and it helps. Still healing from radiation so, maybe once that has healed, I'll feel better! Have been using Domeboro soaks for the past two weeks and I do finally see an improvement...my tumor bed was from 3:00 to 7:00 so where an underwire would be - awful place but slowly getting better. Wishing you all healing and peace!

lala1

Scottiemom1--I hear you about turmeric interfering with Tamoxifen so I asked my MO. He's known as the breast cancer specialist in oncology here in the south and is considered one of the major researchers. I have also become somewhat of a research hound on all things breast cancer. My MO spent a couple of weeks doing as much research as possible into what is being said about turmeric and he sent me some of the articles that he found and used in making his decision. He's decided he's totally ok with my taking it so I'm going to continue. I do think everyone should listen to what their own doctor feels since he/she knows much more about your specific type of cancer. Below are some of the articles that we put together. Hope this helps anyone trying to decide if they should/could take turmeric. All I know is that it's helped me tremendously with the Tamoxifen-induced aches and pains. I've also turned my dad on to it for his arthritic knee (says he feels even better on it than he did after having the injections!) and my DH who just had ACL repair surgery (his docs are impressed with his lack of inflammation and recovery and say he's about 2-3 weeks ahead of where they expected) but of course, they aren't dealing with BC!

Curcumin Modulates Tamoxifen Response in Resistant Breast Cancer Cells.

Harvest the Power of Curcumin To Kill Breast Cancer Cells | MarnieClark.com

Curcumin induces cell death and restores tamoxifen sensitivity in the antiestr

The Effect of Curcumin on Breast Cancer Cells

Can Turmeric Slow Down the Spread of Breast Cancer? | Dr. Nalini Chilkov