Bottle 'o Tamoxifen

Been on it since Nov 2015. No weight gain, actually had lost some weight since chemo - but I've more active & changing my eating habits

I really thought I would hear something today but my pathology report still isn't back from my endometrial biopsy done last Tuesday. My bleeding has almost stopped on day 21 of this cycle & I'm feeling so much more energy. I was trying to be cool but I admit that now I really am anxious about the report, but at least I was able to schedule a follow up pelvic ultrasound next month to check the ovarian cyst they found. Patience, grasshopper..

Today was my first annual appointment with my oncologist. Since I did not have chemo we had limited contact with each other through the initial cancer crap.

Today I told him that I am NOT taking the full 20mg dose because I was never able to find where that dose is the dose I HAVE to take in order for it to be effective. I waited for him to blast me. He blinked a moment and said I was correct, testing on the lowest most effective dose was never done and 20 mg was arrived at as the dose that most women seemed to tolerate without quitting the drug. It was about how patients stuck with the drug but NOT about how much drug they did or did not need to prevent cancer recurrence.

He further said there is evidence now that for the second 5 years on Tamoxifen, taking it intermittently has the same outcome as taking it steadily. In other words, you can be on it for 5 months, off it for 2, back on (etc) and the outcomes are the same as taking it every day for the last 5 years of a 10 year course. He said this method has NOT been tested on recurrence rates in the first 5 years after a diagnosis - but one might extrapolate that if it works for the second 5 year stretch, why not the first? He did not freak out and tell me I was going to die. He said some tamoxifen is better than no tamoxifen.

I also told him that when my vagina dries up and becomes an annoying problem that makes my life miserable, I squirt up some Premarin, which is contraindicated for hormone driven breast cancers - and I waited for him to blast me. He did not. He said the evidence on that points more and more to it NOT be extremely contraindicated. He said it would be a bad idea to use it every day. I said I don't. I have used it one time in the past year. One desperate moment of needing my vagina to back the hell off. He said, pffft, once a year or even 5 times a year, not going to make any difference.

Overall I think it went okay and I feel like I am not committing suicide by taking half a pill most days, and a whole 20mg Sunday and Wednesday. I've got my own little routine worked out - and still having all those glorious side effects, that aren't so 'side'.

Runor - it’s probably going to take a bit of time before noticing a diff. Apparently tamox levels stick around for a few weeks/months. Fingers crossed it gets better for you! Thanks for posting your experience, you’ve given me good stuff to present to my MO in December when I do the AL switcharoo

Mimi - My MO & NP gave it a thumbs up.

Robinj

They should take repeated blood tests until you are menopausal for sure. That is what I am doing at 52 since I was premenopausal despite a partial hysterectomy that stopped my periods.

If you take an AI premenopausally then you actually increase your BC risk. So, I am on Tamox until I get repeated blood tests that indicate menopause. I am trending there fast!

Egads, I must be writing poorly because I was not clear. I am NOT going off tamoxifen. Nor am I using it intermittently. I take tamoxifen every day, but HALF a pill, taking a whole 20mg pill each Sunday and Wednesday. I am only a year (not quite, in August) into tamox, 4 to go. We did discuss switching to an AI but he said that after 2 full years of no periods and some hormone level tests, THEN we can discuss switching. I said, what if I don't want to switch, what if the devil I know is better than the devil I don't know, will it increase my chances of a recurrence? He said yes, an itty bitty miniscule amount. In other words, if I am comfortable with the tamox he is comfortable letting me stay on it. But that discussion won't happen for another year.

He also said my periods might come back. Oh hell no! I am NOT missing those rotten things one bit!

I did tell him I was having joint pain, hair falling out, loss of vision and epic leg cramps. He didn't offer one word of solution or comment. He's very well read and current in all studies, but a little short on compassion. But he is a snazzy dresser, I have to say.

DownNotOut - I'm going to do some more research and see if I can get my brother (who is an internal med doc) to interpret a couple of studies for me. He doesn't have the expertise to advise me, but he might to able to explain medical jibbish to me. Since Tamox does increase the risk of endometrial bleeding, then an IUD would protect from that, even if just a little progesterone was seeping out. And I cannot tolerate those heavy periods with clots. I just CANNOT. So someone is really going to have to prove to me that the Mirena has a dramatic effect on recurrence before I give it up. I asked today what the risk of recurrence was. He said Tamox would cut that in half. But are talking a recurrence rate of 40%, 5%, what? They are supposed to call me back because they didn't have that handy in my record.

Runor & Nonomimi5 -- someone recently told me about a new hair system called Monat, that is supposed to grown and thicken hair. I've not even checked it out yet, but you might want to check into it.

Since April, when I was diagnosed, I've been teary eyed, stressed, scared, anxious. Someone told me I would eventually get mad. Well, I am now!!! And I'm only 3 1/2 months into this damn cancer "journey" (with sarcasm) and I am tired of this crap!!!

Well said Beaverntx,

My sister just left town and this was the first time she visited, since Christmas holiday 2016 (when I got diagnosed), that we DIDN'T have an appointment at MD Anderson for treatment, surgery or ANYTHING! I had 4 surgeries and six months of chemo, since then. My hair grew back but now I am completely bald again...late effects of chemo on my immune system likely. It might grow back...it might not...getting treated for my alopecia for the next 12-18 months or so. But, still...I am light years from last year this time when I was going to the ER, later to be admitted to the hospital, and wondering whether I could do my last two doses of chemo and stay alive (did the last two doses and rang the bell on August 31st...right after Harvey hit!

So, RobinJ, hang in there. I'm a bald chick that is still feeling blessed to be here, choking down the Tamoxifen daily. I volunteer at MD Anderson and, every week, I see how far I have come as I help others along the way.

Runor, your writing was all good, and I got what you were saying. It's my writing that's the prob lol! What meant was me discussing dosage when I switch (if I switch, not liking ALs much, bones and all). My ER+ (PR-/HER-) was only 15%, which only showed on surgery path. Originally diagnosed as TN and treated that way before the actual path showed different. I'm questioning the need if the % (as they termed it) squeaked by. If they insist it's needed then I'm going to question dosage...maybe what you're doing is possible for me with the AL. I like my bones the way they are lol! If I stay on tamox I'm still going to question dosage...that's where your info interested me.

I might also ask that he dress better, dude isn't exactly a fashion plate...more like a dinner plate ))

Progesterone Receptor + is a very good thing to have! Many of us are Estrogen & Progesterone +. What does that mean exactly? Let's find out:

On the estrogen side, it means that the breast cancer uses estrogen to fuel its growth and cell replication. Treatment-wise this is good because we have hormone blockers like tamoxifen and aromatase inhibitors which prevent the body from changing androgens into estrogen in our fat tissues through a process known as aromatization. This means we can actively cutoff a significant part of the fuel the cancer is using to grow and divide.

In contrast, progesterone+ is NOT the same as estrogen+. It does NOT mean that the cancer is fueled by progesterone. Rather, it means that the cancer has progesterone receptors for the progesterone your body makes to attach to. You actually want this to happen as it turns out the progesterone attached to its receptor on the cell actually SLOWS the cancer cell replication/growth/division down significantly. It’s one of the 2 primary reasons why ladies with HR+ breast cancer have better prognosis than those whose BC is HR-

I hope this helps explain things a little better as it relates to ER+ and PR+. I believe this also explains why there is not a push to block progesterone (i know thats been a question before) and why the researchers investigating mirena were not concerned about the levonorgestrel/progesterone component. For those that are interested, here's the link to the full text that the graphics came from:

https://www.google.com/amp/scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/amp/?source=images

I use to use progesterone cream, stopped it as soon as I was positive for BC, too bad I gave the bottle away. I wonder if that cream slowed my cancer's growth rate....

marijen- I personally don't think it's a problem. I'm also an advocate of using intrarosa for those issues. Both have primarily local effects on the vaginal tissue and little to none gets in the blood stream. I can't remember if it was in this thread or on the AI thread (thank you letrozole for the memory issues) that someone (I think it was runor) said their MO was like no big deal to use even premarin cream occasionally (like 5 times a year and just a small bit of cream).

Blownaway- it takes months (~3.5 to be precise) for the tamoxifen to get to lowsingle digit mgs in your blood stream after you stop taking it. I felt relief from the joint issues about 2-3 months after stopping it. The brain fog took much longer to go away. Taking anti-inflammatories like Curcumin can make a big difference in the joint pain.

Lula, yes it was me who said my onc was like, meh, whatever, use Premarin a few times a year and you're fine. He did suggest other things for vaginal lubrication and I pointed out lack of lubrication was not the problem, a specific glandular issue that I have had a few times since I turned 40 (14 years ago!) was the problem and Premarin clears that up instantly, two applications at the most. SO I was NOT using it for moisture, but to treat a specific problem. He knows my stance on quality of life - THERE HAS TO BE SOME!

Wow Lula, didn’t know that about weight gain. I wish I could post what it says in the book but it’s the audible version I have. Thanks for your trouble. I have also read progesterone helps with sleep But not worth it.