Starting Tamoxifen

Hi Colt45,

Love your handle! My retired Marine mate would approve! You don't say what your wifes age is, which is important when it comes to hormones and hormone blockers.

I can only share my personal experience with you although it seems to run paralell to what I have read.

I am 42 and have been taking tamoxifen for 7 months now. The first month was really rough! I had body drenching night sweats almost every night which made it very hard to get a restfull nights sleep. I'd wake up soaking, take my pj's off or change them, flip my pillows around to find a cool dry side. I was so tired all the time that first month! If your wife has these, unless you sleep like the dead it will mess with you too. Rocky (my man) says its like someone flips a switch as soon as I fall asleep, he can feel the heat radiating off of me. Not the kind of hot, steamy night most have in mind

Also the first few months there was just extra vaginal moistness, just clear stuff. (Hope its not too much info) Also when she has her first menstrual cycle on tamox, if she says the blood kind of burns and irritates the skin, it is not her imagination. PMS during the first few months made me extremely hostile to just about everyone. I just kept reminding myself I really didn't want these people dead and if I was still pissed in a week, then I would give them a tounge lashing. The next week I was always back to normal.

Alot of women are also prescribed effexor to help with the night sweats and hot flashes. I am not able to take it, it makes me vomit within 30 min. of taking it. I did find that the supplement SAM-e helps me alot with that side effect and also the depression that comes along with it sometimes.

Also the first few months I had problems with constipation which  led to hemmorhoids for a while. Dulcolax for women is very effective and gentle. She also might want to up her fiber and water intake for that problem. After a few months of that it also seemed to level out and I have no problem with it now.

Like alot of other women, as with me. All of the SE's seem to cycle one at a time, and when they seem un-bearable they seem to disappear and another comes to take its place. If I had to bet money on it, my money would be on the night sweats showing up first.

Oh, the brand that I take is Teva walgreens seems to carry that brand. I always take it in the morning. I have not had the sleepiness and nausea that some women experience.

At first I thought I would not be able to tolerate this for 5 years. Now with some mild joint pain being the only SE I regularly experience. I've decided I can and will do it.

I also have taken on the view. That this is the one thing I can actively do to up the chances that I will not have a re-occurence! My little weapon in the fight against cancer.

I hope this will help with some of your questions. I'm not a regular poster, but if you have any questions I check often and will add this thread to my favorites. Good luck to you and your wife, and kudos to you for being a supportive husband!

Hi Colt45,

Every woman is different and the SEs can come and go as your wife's body adjusts to Tamoxifen. She may need to go through an adjustment period, and try different things to handle the different SEs which she experiences.  Tell her to be patient, try different things (once again everyone's body reacts differently), and talk with her doctor about her SEs because she should not suffer.  Some folks bodies don't adjust and the SEs become unmanageable, but that can be said about everyone for different types of medications or food, etc...  What works for one person might not work the same for another.

Originally I had dry skin, then came being emotional, hot flashes, vaginal atrophy, no libedo, leg cramps, joint pain, insomnia (this could be due to the night sweats), increased bruising, and incontinence.  Oh, and I discovered that I need to eat food within an hour of taking tamoxifen or I get nausea.

However, I discovered that I could control many of the SEs in a couple of ways.

- Figured out each manufacturer of Tamoxifen uses different fillers, and that my body reacted to them differently. There is a thread you might find helpful Differences in SEs with Tamox from different manufacturers http://community.breastcancer.org/forum/78/topic/780358. I found Mylan works best for me with the least SEs.

- Did Acupuncture which I believed really helped with the hot flashes, joint pain and incontinence.  Haven't done it in about 6 months though because I haven't felt the need.

- Discovered that I needed to take extra magnesium (helped with leg cramps), calcium and B6/B12.

- Exercise also seems to improved my overall SEs, such as yoga, walking, recombinent bike or pilates

Make sure she avoids foods which interfer with Tamoxifen - no grapefruit and OTC meds can also interfer so be sure to talk with a pharmacist for cold meds, allergy meds, etc...

I have been on Tamoxifen for almost two years now and currently my only SEs are dry skin (use coconut oil in the shower), hot flashes (only at night and worse in hot weather, but manageable at the moment), and I cry easily, but my kids and DH just laugh at me and tell me they love me, even if I am crying because of a lame TV commerical. I know this may be TMI, but my sex life is back on track and better than ever now - my DH is very happy .

Oh, also be sure she sees her OB/GYN yearly and at the first sign of something out of the ordinary to insist on a vaginal ultra sound.

Hi Colt,



I may not be able to contribute much as I've only been on Tamoxifen for about 3 weeks. I take the Teva brand and so far the SE for me are minimal. I'm 41 as well. I've had no hot flashes (I tend to get cold easily anyway), no night sweats. Only SE is mild vaginal discharge and once I got intense abdominal cramps that lasted for 20 mins and were gone just like that. Some leg cramps once or twice but that seemed to go away quickly too.



I take mine at night before bedtime. Don't know if that makes a difference or not for everyone, buy for me taking it at night has worked well.



Hope your wife has minimal SE and kudos to you for being such a loving, supportive husband!



Jen

I have been trying to figure out why my pharmacy substituted Teva for the Mylan I had been takeing for a year. AFter emailing the Mylan company, I received a phone call that they are no longer producing it.

I am sooo grateful to have found this board. I have been on tamoxifin for 7months and had only muscle aches at first. My tx was very aggressive (adjunct chemo) 3 unsuccessful lumpectomies followed be 3months oral chemo, a double mastectomy and 30 radiation txs. I managed all of that and my mothers passing in December from a 30 year breast cancer battle.

So in the last month l began having trouble sleeping more than 5-6hours. My boseey hurt EVERYWHERE! I felt like l had morning sickness everyday, which mace drinkinb fluid very difficult, making my body aches worse. Also, l had a diagnosis of type 2 diabetes. Try not eating carbs when you are nauseous allthe time. I began feeling "fiesty". Then it turned within about a 3 weeks to what felt like sociopathic rage. I am not kidding! I started isolating because l was afraid of what may come out of my mouth. Finally l began to have such anxiety thzt l wanted to rip my face off. I have been sober and in recovsry since l was 23. I excersise, have a good support group and see a therapist to talk about the effects of this disease and l believe l take really good care of myself.

So June 1st l found this panel and read what others experienced with the tamoxifin side effects. What a relief because l thought l was going crazy! So l am done with tamoxifin.l would rather let the stakes fall where they may than live like this. This is not living! So tamoxifin "reduces" my chance of recurrance. Sorry, but that Is not good enough to feel that bad!

Phew! Thanks for allowing that dump. I needed.