Bottle 'o Tamoxifen

KateB79

Blownaway, the half-life of Tamoxifen is about 5-7 days (for full clearance from the system).

My MO said that SE timing varies. Some women get hit like a truck right out of the gate; others of us have SEs that peak at six weeks; still others experience nothing at all. My hot flashes/night sweats got worse within a week, but other than that and mild constipation, I'm not having any problems at three weeks. <knocks wood>

solfeo

I'm having this new horrible symptom that I don't know is from the tamoxifen or something else. My big toes have been burning at times like they are on fire. Underneath the toenail - so sensitive that I can barely stand to touch them. Even the sheet covering them in bed is too much to bear. It's not all the time. Seems to hit me in bed or when I've been sitting in my desk chair for awhile. Has anyone else experienced anything like this? My oncologist had never heard a similar complaint.

Blownaway

solfeo - the bottoms of my feet burn. I had "significant" hand and foot syndrome during chemo that caused this neuropathy, plus other sites.

solfeo

I think it probably is some kind of neuropathy but I didn't have chemo. I don't see neuropathy on lists of tamoxifen side effects. Blownaway, my heart goes out to you and anyone else living with this during/after chemo. It sucks.

I'm having other weird symptoms caused by problems in my back so maybe that is what is doing it. I've had back pain for years before the dx, that I was told was from degenerative changes and arthritis after my original scans, but my MO wants me to have another CT and bone scan which is freaking me out. Of course I went looking for reassurance on these boards and found stories of people who were originally diagnosed with arthritis that turned out to be mets.

I'm not having a good day.

MJS1266

Solfeo, I had neuropathy with Taxol. A few months after finishing treatment, the neuropathy starting getting worse which apparently is not normal. My MO did a bunch of tests and I had a borderline B 12 deficiency which can cause neuropathy. She tested for some other vitamin/mineral deficiencies but i can't remember what they were. I started taking a B12 supplement sublingual and the neuropathy improved quite a bit. It seems to be continuing to improve so I am still hopeful it will go away completely. Neuropathy after Taxol can last up to 2 years. A friend of mine also had similar symptoms (she didn't have cancer) and she too ended up having a borderline B 12 deficiency and her symptoms went away. Hope yours is caused by something similar not mets. All the best, MJ

LynnBM

Hi all! I am currently undergoing radiation for stage 1 grade 1 IDC. I was just told yesterday that I don't have to have chemo because my Onyx score came back low so chemo would not benefit me. For that I am very thankful! I do however have to start taking Tamoxifen after radiation. I'm reading the stories here and have heard so many horrible SE from this drug that now I'm terrified. I did relay my concerns to my doctor and he said of course each person experiences different SE or some none at all. I was hoping if anyone has experienced any success with this drug. Thanks

rleepac

Lots and lots of women have experienced success with this drug. Unfortunately, you'll mostly hear us complainers on here but there are multitudes more who don't have any SEs and they just don't post.

LynnBM

Thank you!!!

ksusan

Lynn, I've been taking it for 7 months, and while I have some side effects, they've all been manageable and not major.

loriekg

Ok...I know this has been mentioned here before--leg cramps! Last night I woke up with one coming on, usually I just jump out of bed and the stretch makes it go away. Not last night. I walked around until I literally got on the floor and did not know WHAT to do to stop it. I was crying out and it woke up husband who was a little freaked out too. Maybe it lasted 5 or 10 minutes but I thought my muscle was just going to rupture it hurt so bad. I have magnesium and guess I'll be more consistent in taking it!! Any other suggestions? Or tips to stop them once they come on?? I can't imagine what I would have done if I was out shopping...or driving and this happened!

katcar0001

Lorie - I was getting those. Try drinking a lot more water and take magnesium. I think there is good advice on here on what type of magnesium to take. I take magnesium oxide amino acid chelate. I think some women take potassium for these, too, although I never tried that.

Anonymous

Lorie, I was getting foot cramps almost every night last week. But I added magnesium and they went away, plus it's good to take with calcium. So I'm happy it was a simple fix.

queenmomcat

Lynn: could your oncologist hazard a guess about how the tamoxifen might lower your chances of recurrence and other unpleasantnesses? (Probably only an educated guess on her/his part....)

I was on for about four months before fatigue and nausea became bothersome; my MO allowed as how we might try a holiday to see if they're SEs of tamoxifen or something else. (I was totally on board with the 'not menstruating' SE, and hot flashes were present but not untenable.)

solfeo

HI MJS1266 - thanks for the info. I had my B12 tested last month and it was on the high end of normal. I do supplement a modest amount. Wonder if levels could have dropped significantly in a month?

ORgal

loriekg - another vote for magnesium. I haven't had any leg cramps since I started taking it. The last straw was the cramp on the top of my lower leg, the muscle that runs along your shin - didn't know there was a muscle there but it was painful and I couldn't figure out how to get it to stop. The magnesium has also lessened my hot flashes.

Trvler

You can stop a leg cramp in it's tracks by turning your toes up towards yourself the second you feel it coming on.

The only real SE I am having is the chills. I wake up freezing around 4-5 and can't get warm with blankets and a heating pad on top of me. I now refer to Tamoxifen as my Chill Pill.

queenmomcat

I think I get weird leg cramps (possible nerve damage from an unrelated problem): the muscles that twiddle my toes upward and one of those skinny little muscles down the side of my calf that only medical students and physical therapists can remember the name of. But I'll look into magnesium citrate.

MJS1266

LynnBMj, I have been taking Tamoxifen since August 2015. I have had no appreciable SE's that I can completely attribute to tamoxifen. I was off it for a month to have surgery and really I think my hot flashes were worse during that month. I've had occasional leg muscle spasms at night but I had those before. I have hotflashes occasionally but again peri-menopausal and had them anyways. I have some memory issues but that is also a side-effect of chemo and just getting older. I would try it without fear and preconceived notions. That being said some women do have severe SEs, however SEs aren't permanent so if they are kicking your butt you can always stop taking it. Each person's case is different but the statistics of this drug demonstrate success in preventing recurrence in women with ER/PR+ disease. Your MO should go over that with you. Also, you can try different brands of Tamoxifen as some women have SEs due to the different fillers used in the production. I am grateful that it is an option and grateful that I don't have any severe SE's. Hopefully, you will be one of those without significant SEs. All the best, MJ

DeeRatz

LynnBM- I have been on tamoxifen for almost 4 months. I have done very well on Tamoxifen. I have hot flashes, but have had them since my second chemo treatment put me in chemopause. I have trouble sleeping due to the hot flashes, but I can say it is getting better. I take Melatonin before bed and I think it is helping with my sleep. Sure I have aches and pains, but they come and go. I had them before I had cancer so I can't blame the Tamoxifen.

I wouldn't worry about taking it at all. Try it and have an open mind. I was scared about taking it too but there was no reason for me to be. I have done well. Good luck!

lala1

LynnBM---I've been on Tamoxifen for 3 years with few side effects and the ones I do have, I have learned to manage with supplements, yoga, exercise and massage. I feel great! In fact, I feel better now than I did before BC, mostly because I have learned to take care of myself. Don't be afraid of Tamoxifen. It's a great little pill for us ER+ gals. I have been on 2 different brands both with different SEs. The Teva brand works better for me and CVS was happy to order it for me. So give it a try and if you do have SEs, just come back here and someone here will help!!

MomOfTwins98

LynnBM - I am also doing okay on Tamoxifen. I stared radiation on 11/23 and Tamoxifen on 11/30 so they were pretty much started together. I was exhausted! but worked every day..had radiation at 7:30am and then to work. I would bring my twins to school at 7am, radiation, work, pickup from school and then our usual activities etc - I just pushed through and was okay. I didn't realize how tired I was until it was over but really wanted things to remain "normal" for my family. My eyesight was slightly affected so had trouble driving at night but that is also better. At the beginning of Tamoxifen, I also got nausea, chills at night, and bone pain but lots of that is going away. I take gabapentin which is supposed to help a lot and I now take Magnesium at night before bed...one glycinate and one oxide. I use Turmeric with black pepper in at least one meal per day and drink the Yogi tea Joint Comfort with Turmeric. Not sure which is helping but things are better so I'm sticking with it:-) The one bad part is the pelvic pain and bloating and I've gone to my OB several times as I am afraid of the uterine lining thickening. I am having another ultrasound this Saturday as they've found Ovarian cysts before and they resolve but, this bloating is not good - I've actually lost weight since this entire ordeal began on Sept 1 and eat well, still exercise (that also helps A LOT), and I am thin so the bloating is quite noticeable. The radiation did cause lymphedema in my breast but I work with the lymphedema clinic and that, too, is resolving.

To me, as I've said before, that little white pill could save my life so I say a little prayer each night at 5pm when I take it and move on!

annika12

Hi ladies, I have been on it a little over 2 years now and will be at least another 3 then an AI for another 5. I started with few SE's then switched to teva brand and have zero SE's. I feel great , better then before, no moodyness and pain ones a month I am pre menapausal but have no periods and don't miss them. I was so afraid of starting sick of SE from treatments. For cramps try gentle stretching before bed and a heatpad

notdoneliving

Hi all

I've been on Tamoxifen since Jan 7 and have had some weird side effects that everyone has insisted aren't caused by T. I called my medical oncologist last week about them and had blood tests done, including thyroid. The nurse thought some of my symptoms sounded like thyroid. Turns out my TSH is "off the wall" (her words!). So I'm not crazy...everyone was poo-pooing my weight gain, including my partner. But it just wasn't right.

Now I'm a little freaked out. My medical and radiation oncologists both thought my thyroid seemed a little enlarged and I've been sitting on a prescription for an ultrasound because work has been so busy. I searched for thyroid on the boards here and it seems to be sprinkled in a lot of places. It's all so sudden (all my bloods have always been right-down-the-middle normal). There's no chance my BC spread there, is there???

Going to my primary tonight. Actually, the available doctor. <eyeroll>

Thanks ((hugs to all))

Blownaway

notdone - did you have radiation? I was told that it could harm the thyroid and I asked to have my throat covered. They acted like I was nuts. Since treatment, My PCP has upped my thyroid pills twice and am about to have it checked again mid April.

stage1

me too. I asked for a thyroid shield and they said they don't do that. Since then, I have had my thyroid prescription up twice! Since then, I have purchased online a thyroid shield to use for when I get mammograms. Don't understand their resistance to our protection and comfort

katcar0001

Wow, I learn something new here all the time. I did not know that the thyroid gland was at risk from mammograms! I am going to look into that shield.

Anonymous

I ended up switching pharmacies because my current one was not willing to order the brand of Tamoxifen that I requested. Walgreens pharmacy was understanding and the medicine was ready the next day. By the way, little to no hot flashes now with magnesium!

labelle

According to my endocrinologist who I've seen for years due to thyroid issues (Hashimoto's) both radiation treatment and tamoxifen can affect one's thyroid. After I finished RADS she monitored me closely with blood work every 3 months because she said RADS could mess up my thyroid. No problems, but I did opt to have RADS in the prone positions and skipped having the supraclavical area done).

Now that I've started taking Tamoxifen, she is seeing me every 3 months again as Tamoxifen can apparently change thyroid function or change how my thyroid meds are absorbed or both (I'm not quite clear which it is, only that the Tamoxifen puts me back on the every 3 months schedule). For anything thyroid, I'd definitely recommend seeing an endocrinologist. I let my PCP dink around with my thyroid meds for awhile after being diagnosed with Hashimoto's, but in retrospect, I should have gone directly to an endocrinologist.

twix71

Has anyone had an increase in teeth grinding or bruxism since starting tamoxifen? I have had minor issues with teeth grinding on and off over the years, but have noticed a dramatic increase in the past few months since starting Tamoxifen in November 2015, most noticeably since the pharmacy switched my prescription brand from TEVA over to APO a month ago. I am actually doing the grinding in the daytime, not at night. So, the mouth guard my dentist made for me is not really very effective.

Scottiemom11

On the subject of switched brands: I have been on Watson for 15 mos, since I started Tamoxifen. Today, for the first time, my pharmacy gave me Actavis. Has anyone taken this brand? I don't remember seeing it on this board and I think I will call the pharmacy tomorrow to ask if they can order Watson and switch it out. I have enough for three weeks.

UPDATE: I should know by now to Google first. Apparently Watson is now Atavis.

http://www.drugs.com/manufacturer/watson-pharmaceuticals-inc-now-actavis-inc-150.html

On another topic which was discussed recently, I asked my pharmacist about benadryl, because my allergies are going crazy with all the pollen. He looked it up for me, said their system has all the drug interactions and benedryl is NOT listed. For now I will not worry about it, but I will ask MO at next appt.

Scottie