Bottle 'o Tamoxifen

TinyDancer5

l also heard NO Benadryl while on Tamoxifen. I tried the gummies and they didn't do anything for me. Switched to a pill and I sleep very well. I hear many of you are experiencing pain while on Tamoxifen. I don't have any pain. Bitchy at times...yes! Moody...yes! Cry for no reason...yes.

Anonymous

Thank God my hot flashes have calmed down. It might be cooler weather but I'll take it! I tried two different doses of melatonin (.5mg and 1mg) and I felt like I had more restlessness than when I didn't take it. I might try the gummies though. Other than the hot flashes I don't have any noticeable side effects from Tamoxifen.

molliefish

I am loathe to be insensitive, but I have to ask. I have an incredible amount of intestinal gas in the past 2-3 weeks. I didn't hear that as a side effect of tamoxifen. And I've had not other side effects. Any thoughts? Am i just eating too much fibre??? LOL

molliefish

Also I seem to have gotten the hang of taking them on time as I counted today and I'm only 2 off what I should be for today. That's pretty good since I wake up often trying to remember if I took it or not. One day this will all be a bad dream.

ladyb1234

Molliefush, GERD, gas, belching, you name it I had most SEs with Tamoxifen when it came to my GI tract. My MO always states there are common SEs with Tamoxifen but each of us are unique and our body reacts differently. I was put on prescription Prilosec, and supplemented with an antacid like Gaviscon or Mylanta and took Gas-x depending on the severity. My Pcp said it would take about 6 months for my system to "adjust" and he was right. I gradually began to reduced my daily Prilosec And now down to three a week. Tried this several times and was successful in gradually reducing my dosage in January. I started Tamoxifen April 2015

Hope this helps

KateB79

Molliefish, have you tried taking a probiotic or eating more yogurt? Since you brought it up, I'll chime in and say that I think the tamoxifen is making me slightly . . . uh . . . less regular than before, and I'm super-sensitive to such things, given the state of affairs during chemo (I was more constipated than I have ever been or ever want to be again). I've upped the magnesium.

Re: melatonin and restlessness: it's a pretty precise dosage for a lot of us. I get restless with less than 1mg. Tonight I'm upping it to 5mg; just gonna see what happens.

I still haven't bought the turmeric. Maybe this week.

Here's a question: what brand of tamoxifen are you ladies taking? I've read that it can matter, and a friend of mine on another site is struggling since Actavis bought Watson (her brand). I'm on Teva. Do these kinds of things really matter?

AmyfromMI

Kate, to answer your last question - yes, yes, yes! I started on Mylan in May 2013 and was soon switched to Watson because Mylan was no longer available. My SEs were so bad on Watson, specifically the bone and joint pain, I was in tears all the time. I was about to try Teva when I discovered the liquid Soltamox. I got the script for Soltamox and my bone and joint pain went away. I never tried Teva. I still had hot flashes and cold chills (not too bothersome), leg cramps (managed with magnesium), and ovarian/pelvic pain. I lived with these SEs for almost three years. I just stopped tamoxifen three weeks ago with my doctor's ok. I have an appt with my MO in early April and we will talk about ovary suppression/removal and an AI.

JerseyGirl22

Hi everyone!

KateB79, I swear I'm not stalking you!! Ha! We seem to be proceeding through treatment on the same threads...

I'm only on day 2 of Tamoxifen, but wanted to share what another patient I met yesterday shared - that magnesium oxide helped with her hot flashes, constipation, joint/muscle aches, AND helped her sleep better! Hmmm, may have to see about that.... Like some others out here, mostly during chemo I had the Big D and was actually getting back to "regularity" while being on Herceptin only and using a probiotic... I'm hoping that The Big C doesn't show up... I got it once during chemo and it was so bad I had to take magnesium citrate... YUCK! worst experience ever with that stuff!!!

lala1

I'm one of the ones who also had GI issues with Tamoxifen. Started about a year into taking it. Eventually I discovered a good probiotic that I only buy local so I know it is refrigerated. It seems to help alot. My gas was/is belching. Still have bouts of it every once in a while. As far as regularity, I did extensive research on magnesium and ended up settling on two different kinds. I take 200mg of magnesium glycinate each night which is supposed to be really good for joint pain and hot flashes. Then each morning I take 2 SloMag tablets which is 150mg of magnesium chloride and is supposed to be good for making you regular. Works very well for me as I'm regular as a clock and my hot flashes are bearable!!

KateB79

I take tons of magnesium: 450 mg per day of mag malate (which is great for bone and muscle pain--I discovered this while in chemo) and up to 600 mg of an oxide/citrate blend, as needed for constipation or hot flashes.

Magnesium is horribly underrated, IMO.

JerseyGirl, stalk away! I'm always happy to see you!

etnasgrl

I've got a quick question.....

I've ALWAYS had sore and tender breasts the week before my period and sometimes sooner that that. It's been this way for as far back as I can remember.
Also, in the past, every evening when I took off my bra, my breasts would be tender for about an hour or so, no matter where in my cycle I was.

I've been on Tamoxifen about a month now and have noticed that my breasts are not tender or sore at all. Is this from the Tamoxifen? I'm thinking so, but I was just wondering what y'all thought and if any of you experienced this as well.

MomOfTwins98

Hi all

I find that, if i take my calcium and Vit d in the morning with some prune juice and have 2-4 teaspoons of Benefiber a day, I'm much better! I also use a 7 day clear daily box for my Tamoxifen so I wont forget or question myself as to whether I've taken it - with the mind games being played by this medication, that can happen;-) I've also heard that switching brands can cause problems so I have my pharmacy order me Mylan a week before I need it so that does not happen - was a struggle at first but, when they realized I was not backing down, they became accommodating. As to the pelvic/abdominal pain, I definitely have it but, just this past weekend, started to try to eat gluten free, per my OB's recommendation, and I think it is really helping. I got so scared as I have such bloating and I'm not overweight and I asked her to please check me...she did and did an exam and said all seemed okay - she said to try the gluten free on the off-chance that it helps - I find it rather easy so going to try it for a while. My children have severe food allergies so I'm used to reading labels...just a few more things to look for. I'm also sticking with the turmeric/pepper combo although not sure if its helping - not hurting so why not? Magensium is not helping me sleep either but will stick with that too

katcar0001

Reporting back from the eye doctor here... she said I had VERY dry eyes. This is not something I had problems with before taking Tamoxifen. But then again, all my mucous membranes are dry now. She put temporary plugs in and prescribed 3 different types of drops (Systane Ultra for day, steroid drops. and a gel for night), so we will see how it goes and then check back in 2 months and maybe go for permanent plugs. She said no sign of cataracts, which is great, and now we have a baseline. I guess that is something that can show up with longer term use of Tamoxifen. Of course, getting older factors in too.

Thanks Kate and Lala for the magnesium tips! I am going to step up my intake.

Scottiemom11

Katcar. . .don't go for permanent plugs if you can avoid them. I've had severe dry eyes for many years and had my upper tear ducts closed. Uggg

I take probiotics, turmeric and mag citrate among others. For the past few months I was having horrible digestive trouble. Thought I had another ulcer. I had not thought of it from the Tamox standpoint. Who knows. I had to add a gastroenterologist to my stable of doctors. So far I have had an upper GI scope and my gallbladder scanned. Colon is next month.

I'm mildly allergic to milk so not able to tolerate yogurt at the moment. I am trying to eat as healthy as possible though and have upped my exercise.

Scottie

katcar0001

Scottiemom: Thanks for the warning--did the plugs not help you? Why did you not like them? I thought the "permanent" ones had to be replaced in 2 years cuz they are not all that permanent?

I would think staying off the dairy/milk products would help your tummy, esp. since you have an allergy. I hardly eat any dairy anymore--not even butter or yogurt--and I am finding that my acid reflux is a lot better as well as not having so many digestive issues. Have you been checked for h. pylori? I have had it several times, and it causes ulcers.

Trvler

Just wondering if Tamoxifen is on the list of discontinued meds before surgery because I have stage 2 coming up soon.

katcar0001

Yes, due to risk of blood clots. Surgeons all have different protocols, though. Mine wanted me off 10 days before and 3 afterwards. I also wore compression stockings during surgery. Good luck with your stage 2 surgery!

rleepac

I just got my pre-op instructions and my PS wants me off it for 1 week before and 'until cleared after'

Scottiemom11

MO told me to stop Tamox a week before EX. I stopped two weeks just to be safe and waited a week after to start back up.

Scottie

ayr1016

oy! My usually very normal skin (not oily, not dry) is now dry 2 months into starting Tamoxifen. What do you all use for moisturizers and lotions? I have an over active sense of smell, so I need unscented.

ayr1016

So glad it has been mentioned to stop Tamoxifen before surgery. This is valuable info for me since I started doing the Tam. before surgery. I will hope that my surgeon tells me this, but glad I read about it on here!

katcar0001

I am still struggling with dryness on my body but I can manage my facial skin now. One thing that has really helped is using the OCM (Oil Cleansing Method) instead of soap. I use a combo of olive oil and castor oil. You can google for details. Toleriane from La Roche-Posay is a very gentle, non-drying cleanser if you want something you can wash off easily.The other thing I use is either Meadowfoam oil or coconut oil to moisturize. If only I could put that stuff inside my eye sockets... I have started using the lowest percentage Retin-A 2x a week and am trying to work my way up. When my skin gets really nasty and rough, I use my Clarisonic and then put Vaseline over the oil. Oh, and I ordered a humidifier for my bedroom.

molliefish

Toleriane from La Roche-Posay I'll second the recommend for this brand... i use the moisturizer.... it's dear $$$$ but very clean in regard to Carcinogens, and scent free....

One_Bad_Boob

Thank you for all of the info! I got a leg cramp last night that brought me to tears! Getting magnesium and tumeric today and tossing the Benadryl. I'm a little confused about the difference between mag malate, oxide and citrate.

lala1

OneBadBoob---Magnesium glycinate will help with muscle and joint pain. Magnesium chloride will help with regularity. They both have very good bioavailability. Those are the two I take. I don't know what all the rest will do (although I should Google it just so I'll know for future use )

KateB79

I second the recommendation for mag glycinate (or malate) for muscle cramps!

Question: constipation? Discuss. I'm taking a lot of magnesium and a probiotic, and drinking at least two quarts of water a day...

lala1

KateB79--Not all magnesium is for constipation. That's why I take 2 different kinds...one for joint pain and one for constipation.

ayr1016

Thank you for the Toleriane from La Roche-Posay and other moisturizing suggestions. I'm checking them out.

Constipation: ugh! I have this terribly right now. I started eating prunes this morning and took 1 Colace (my dr office suggested this) last night and 1 this morning. Hoping that will help. Might try magnesium.

JerseyGirl22

OK, day 6... need some thoughts here... since day one, violent nausea, extreme fatigue, and really bad diarrhea... lasts for about 6 hours!!!! I'm trying to eat, drink lots (ginger ale right now) and rest. This unbelievable though!!! It feels like week two of a chemo cycle. Anyone else have bad side effects??? MO says, take Zofran for the nausea, Immodium for the diarrhea, and Ativan for helping with sleep... Ugh! I don't want to take all of this other stuff just to take this drug...

Help!

ladyb1234

hi Jerseygirl, I was one of the ones that had horrible SEs from Tamixifen. For the initial nausea I took the Zofran. It lasted a few weeks then went away. When are you taking your meds? I found that mid day worked the best to combat nausea and fati. Morning dose did not work for me. I took Avitan as needed for the first 4 months and now only take it rarely. As the melatonin seems to have kicked in and helps.