Bottle 'o Tamoxifen

I know a few people like Michelle from Illinois split their dose into 2 10mg pills. I found this abstract interesting. It made me wonder if 2 separate doses had been standard at one time.

http://ascopubs.org/doi/pdf/10.1200/JCO.1994.12.1....

Per my very wise OBGYN, never use soap or creams or anything on your lady parts...just rinse with water and make sure to dry too (warm/cool setting low of blow dryer works well). The lack of estrogen can lead to bladder, yeast infections and rashes and creams and soaps can irritate. For lube, I've had good luck with organic almond oil..seems to work as well and no adverse reaction. OBGYN suggesting the Mona Lisa laser procedure of the vagina to help bring back some suppleness...anyone have experience with that?

I had lipo and fat grafting.

Runor: I am sorry you are dealing with all of this but by any chance are you a writer? You paint such colorful images with your writing.

Rozem, good that you are going to get that checked out. I have had about 4 patients in my 7 year NP career that have had post menopausal bleeding that turned out to be nothing. from 1+ years out. so yes, get it checked, it is concerning but most likely nothing. haven't had any others with bleeding so far 100% of those pts are ok.

my MO told me that tamoxifin could cause vaginal bleeding. haven't had any yet....but only 2 months of taking it. 

@ Pamela23 - you make some great points. I did do chemo (Taxol and FAC). I did go into chemopause. I didn’t have any vaginal dryness or loss of libido with it. Chemo ended in April and I happily started Tamoxifen with an open mind in June? (Can’t remember if June or July). I was fine up until then.

I had hot flashes during chemo. I also had them on Tamoxifen all day, everyday—not just at night—and dripped with sweat. I was nauseous for about the first week and then my body seemed to get used to it. Then I started noticing the drying, sagging of my face, age spots on my face, jowels. The vaginal atrophy got worse and worse. About 8 months in at a gyno appointment, my doctor literally said out loud “Oh my, God!” when she saw the atrophy. Never a good sign. Ha!

The brain fog was horrible. Had the joint pain in hands and knees. That was tolerable. Getting a clot was my deal breaker. I made it about two to two and a half years. As soon as I quit, the brain fog started improving. Still have some. I have started producing some moisture but no libido and I don’t think the atrophy is reversible.

I am sure chemo contributed and I agree it probably does continue to contribute. I just don’t know how much.

I wasn’t offered Esterace (or anything like it) until I told my MO I would likely quit. You were smart to try it and to give your body a break to see what’s what. An angry bladder sounds horrible! Who wants that?! Haha. Now I need to google that. I’m sorry you had to go off of it but I am so glad it helped your body to start producing moisture.

My regrets are I wish I had thrown a tantrum sooner and got something to help the atrophy even while still on the Tamoxifen.

Wish I had quit sooner and maybe tried something else.

We need better options!

Congrats on your clear mammo. You have been through a lot. You may be able to take the Tamoxifen just fine. My friend had some pretty annoying symptoms at first but over time, her body adjusted and she is doing great on it.

Is it just me or is it the women who say, I have a really annoying vaginal discharge but otherwise feeling okay when they first start it who tend to do better?

Runor I switched back to Dove body wash because I noticed the burning from soap even without directly putting soap there. I would recommend you look into Esterace or something before you get to the grapes of wrath situation I let myself get to! God I hope your uterus doesn’t fall on the floor. Wouldn’t that be embarrassing? 😀 Good luck and keep us posted!

For the person who asked, there is info about the Mona Lisa procedure and some other procedure on the what no one tells you about cancer and your sex life thread.

I have to chime in here. I didn't do chemo, but had total hysteriectomy a month after completing rads and started tamoxifen in July of 2016. I have absolutely NO sex drive, have no feeling down there whatsoever, and have to use lube for any action at all. I don't even bother with my toy anymore either since I can no longer have a climax. I don't know if its the medicine combined with hysterectomy. Im scared to stop the medicine. I use replens but sporadically since its so messy and have to wear a pad since it oozes out all night. Thank God my husband has difficulty keeping it up because of HIS meds, so were a perfect fit for each other loll!!!!

rumor - ditto on the Johnny Depp

So....this morning I took my last Tamoxifen pill!!! I'm very excited and also very scared. All my doctors keep saying don't worry, that I'm low risk, that the BCI test showed no benefit from continued therapy, etc etc. But still, Tamoxifen has been my safety net. And I still can't forget that the BCI test showed me as high risk for recurrence, albeit at the very low end at 7.5%. I'm consoling myself with the conviction that this extra weight is going to literally FALL off my over the next couple of weeks! LOL! So I'll keep everyone updated on if all these aches and pains and other SEs really do subside once you quit the meds. Fingers crossed!

lala1, I think about being in your situation a lot. When the time comes for me to go off tamox, how will I feel? Will I feel like I'm a walking target for some terrorist cancer cell to go berserk in my body? With that in mind I am wondering how my onc would react if I said I wanted to continue after 5 years, but at a much lower, every other day dose.

Now my onc might poopoo the idea and tell me that intermittent, low dose is not effective. But the truth is he does not know if it will be ineffective. There is no research to support effectiveness and no research to disprove it either. There is a teeny amount of research that says low dose can keep the levels of tamox in the body high enough to be effective. But it will take the second coming of Christ to change protocol, so I'm not holding my breath for that.

If you tolerated tamoxifen well, if you feel worried being totally unmedicated, tell your doc you want to continue on but on a dosage level and time schedule that is OF YOUR OWN CHOOSING. Then get some 20mg tabs, cut them in half, and take on half every other day. Or even go lower with the dosage. Split 10mg tabs and take one every other day. Or take a 20mg tab every 4 days. I mean ... do what you want. You've put in your 5 years, if you feel insecure, tailor make your own scaled down usage. You do not have to go cold turkey on this unless tamoxifen is medically bad for you. (well it is bad for all of us but I mean super serious bad)

When I hear of women feeling so miserable on this drug that they are driven to quit , choosing recurrence because that's how horrible they feel, while mule-headed doctors do not help ease the situation by suggesting a lower dose, I go berserk. Stupid, stubborn ,entrenched medical protocol puts women at risk by telling them they MUST take 20mg every damn day come hell or high water. A doctor would serve his patient far better if he said, "look, I realize this drug is making you feel like shit, so let's try 10 mg a day for 6 months and see if that's more tolerable to you." But time and again a book educated, but creatively stupid doctor, DOES NOT say that !

Yes, 20 mg every day is standard protocol. But the more I look into it the more it seems that was arrived at from a not overly rigorous method. It was the most tolerated dosage, dialing back from even higher doses. It was the least toxic. But nowhere, NOFRICKINWHERE have I seen the data that says "we tested this at all dosage levels starting at 1 mg and working up to find the LOWEST EFFECTIVE DOSE." That research does not exist. It never happened (it seems). So. One has to seriously question the method used to arrive at a 20mg dose. It is, to me, complete bullshit. Seriously, ask your doctor WHY the 20mg and if he's honest he'll just shrug and say, standard protocol, that's what the book says. I remain unconvinced that dosage has been studied enough (or really at all!) with tamoxifen. Effectiveness cannot be disputed, but dosage is a whole other ball game.

Lala1, your concerns are normal but you can fine tune this if you want to continue on tamoxifen. In my opinion.

So I wonder about dosage as well. It seems most many medications also take BMI and weight into the equation for dosage. But I’m on the same 20 mg dose as everyone else. Does that matter? Just curious. I know they sure watch carefully for pain meds. I wonder if weight and/or metabolism makes any difference.

East Coast... right there with ya. I don’t get it.

Eastcoast, I wouldn’t wish that s#*t on anyone. I was so close to tears. I’m assuming it’s working lol. If not, I have a whole other set of problems

So I followed a bunch of links from the article swg posted, and I found this one especially applicable-“In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10.9% (SD 2.5) for node-positive (61.4% vs 50.5% survival, 2p<0.00001) and 5.6% (SD 1.3) for node-negative (78.9% vs 73.3% survival, 2p<0.00001). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups.”

Note that is says the benefits were significant irrespective of dose!!! It’s an NIH article, I’ll try to get the link to post, but not sure if I can from my phone

I have never found any information that says tamoxifen dosage is related to bodyweight. I don't believe it is a drug that the body uses in that way (whatever way that is, haven't a clue).

I know wormers are weight dependent sometimes, but we're not dealing with tapeworms here.

Fingers crossed!