Bottle o Tamoxifen
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Lula,
Thanks for the info on Mirena and Tamoxifen. I did know the hormone in Mirena works more locally than things like birth control pills and also very small doses. So, I wasn't all that concerned about it, since I've told him multiple times I had a Mirena IUD.
But I'm still wondering why they didn't run lab work for my menopausal status before prescribing. I've got a call into the office to ask. Just curious about my treatment and have occasional moments of "freaking out".
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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
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Has anyone asked their MO if taking Biotin for hair loss is ok? Any other solutions for hair loss?
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Mimi - My MO & NP gave it a thumbs up.
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Mimi - My MO & NP gave it a thumbs up.
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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!
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I spoke to the doctor's office earlier today. I have an appointment with the MO in October, and they explained they would test then for menopausal status. But to continue to take the Tamo till then.
But the worse news is.... my cancer also has progesterone receptors and the Mirena IUD secretes progresterone. So, I have to have it out. In reading about the copper IUD, the biggest side effect is heavy bleeding, which is why I have a Mirena in the first place, because my periods were so very heavy. So...what to do...I have an appointment with the GYN in a couple of weeks. This just makes me angry.
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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.
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Robin, what you say about progesterone is interesting. My tumor was ER+/PR+ as well, and a few months ago when I asked my MO about all this attention to estrogen but none to the progesterone component, he just shrugged and said it didn't matter. That was an unsatisfying answer! But I still have trouble finding anything out about Progesterone and how that hormone can affect our recurrence risk. I do not want to give up my ovaries if I have this good 'ol Tamoxifen doing its job. But the Mirena and what I've read about it are sounding pretty darn tempting to help with my overactive uterus. Funny thinking of getting an IUD when I've had my tubes tied, but I cannot bleed again like I did the last few weeks! I'm already praying about my next period. I'll discuss with my GYN when I talk to her (hopefully today). Being 52 and premenopausal feels like I'm in limbo-land as far as what to do with hormone support.
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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!!!
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RobinJ, there is hope ahead. I'm at 6 months from diagnosis and after lumpectomy, OncotypeDX, radiation, tooth abcess requiring root canal surgery, endometrial biopsy and total hysterectomy (about 3 1/2 weeks ago), I am beginning to feel like I once again have some control of my life. That started a week or so ago when I realized that for the first time since mid January I did not have a doctor's or treatment appointment for a whole two weeks!
Don't let the anger, which is very normal, control you but use it to energize you. I found it helpful to "walk off my mad"-- gave me exercise while helping my mood.
Good luck to you as you travel this journey none of us choose!
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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.
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Scrafgal - So glad you are feeling better. Amazing that after all this, you still have energy tovolunteer at the hospital. Good for you. So inspirational.
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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
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nonomimi5, Thanks! I am feeling great these days. I work fulltime, but the best part of my week is my volunteer work at the hospital. I know that hanging around our treatment center, when we don't have to, seems wierd, but I get so much fulfillment from doing it. I really cannot explain it! I asked them to put me to good use, wherever, as a volunteer, and they asked me to do in-patient visits. I agreed, and it has been wonderful.
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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:
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Lula? What do you think about using a dime sized bit of progesterone cream everyday? Is that a good thing or a bad thing? Or it doesn’t matter?
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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....
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I've been on/offTamo 3 times and have had significant hair loss each time. I honestly cannot attribute hot flashes or my body pain (feels like fever body aches and also zingers of pain that come/go quickly) to Tamo since it continues long after each time I quit. It's C.I.P.N. I took Tamo for 3 years before a I tried 1/2 dosage, stopping restarting..... I am wondering if my joint problems are Tamo induced. Hips, knees, shoulders, elbows all are requiring various treatments and maybe some surgery, specifically elbows. Does anyone know if the joint issues caused by Tamo are permanent?
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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.
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Lula, I meant as an everyday use to prevent recurrence -you put on the skin. It’s covered in a book “What Your Doctor May Not Tell You About Breast Cancer”.
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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!
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marijen- My answer is still the same. Although I did find this statement about it from an MD at UCLA. Sounds like it can’t really hurt but it may not be helping either based on how much you’re using, it’s absorption stats, and it’s bioavailability.
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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.
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runor--when I was approaching my 5 years on Tamoxifen, my docs and I discussed whether to swap to an AI. I had a total hysterectomy at year 2 on Tamoxifen. My BS's opinion was that if I was doing ok on Tamoxifen (which I was) why mess with a good thing for a tiny bit of improvement in recurrence rates. He has a wife, 4 daughters and 9 granddaughters and said he would recommend the same thing to all of them. He said my recurrence rate was about 5-6% and an AI might drop it by 1-2%. He also wanted to see what the BCI test said. When it came back high risk for recurrence (but on the very low end) and low benefit of continuing Tamoxifen, he still felt the same way. Both he and my MO said I could get possibly a 1-2% improvement in my recurrence risk (which the BCI test showed to be 6%....my BS was pretty accurate in his prediction!) but they felt I could easily achieve that with daily exercise and and about 4-5 servings of fruit and veggies every day. They felt those 2 things would help me even more than continuing Tamoxifen OR an AI! So here I am 5 months out from my 5 years and feeling great! Weight is a little slow to come off but I'm sure being tossed into surgical menopause isn't helping. Nor is the sweet tooth I've had my whole life! But I'm only about 12 pounds overweight and I'm sure if I really really wanted to, I could lose it.
So to sum up (which I could have done from the start!), yes, it could be perfectly ok to stay on Tamoxifen for all 10 years. I'd strongly suggest the BCI test to help with the decision though. I know many docs still don't really go by it, but I have a doctor for a dad and most of his friends are in the cancer field, mostly BC, and they all swear by it.
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Lala. Thank you for sharing your encouraging story. I started Tamo a week ago and feel really tired by late afternoon. It doesn’t help that it’s really hot here. Too tired to cook so I keep ordering food for my family and but trying to stick to eating fruit and vegetables.for myself..but it is so hard. I am also about 10lbs overweight so trying hard not to give in to temptation.
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I’ve been on Tamoxifen 9 days now. And I’m an emotional wreak. Is anyone else crying all the time
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RobinJ, I don't think tamoxifen made me emotional although taking it made me feel emotional. Let me explain.
Staring at that pill, that boring white tablet, my destiny for the next 5 years, maybe 10, the one thing between me and more cancer, opening my mouth and swallowing that pill felt like giving in. It felt, to me, a little like admitting defeat. Yes, this is real. This was not a bad dream. This unbelievable shit really happened. I am not going to wake up from this. This pill signifies that all the badness is REAL.
I was emotional because it felt like that first tablet was a commitment I didn't want to make. It's easy to say "But don't you want to stay alive and not have a recurrence?" Duh, of course! But that didn't change that edge of resentment I have. Some people feel a great sense of gratitude that they have tamoxifen to protect them. I admire that stoic, broad view and wish I had it all the time. I have it sometimes. Often not. I get up and think, I have to take that fuxing pill. Then I trudge into the bathroom and pop it out of the pill box and say, good morning, tafuxifen, guess I better swallow you down. And I do. Then I have coffee. Because coffee makes life worth living. I am not emotional. I just swear at my medication. Perfectly sane.
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RobinJ3024 - For me personally I'm pretty sure the Tamoxifen affects my mood. I've been on it for 2.5 years. I am 52 and was sort of premenapausal before starting the Tamoxifen. It stopped my periods almost immediately so I know it is affecting me. I started it after a lumpectomy and radiation therapy. I think it makes me feel anxious, scared, gloomy and very sensitive and dark. So much so that I have negotiated a one month break from Tamoxifen once a year, otherwise I could not do the 5 years (I have a pretty low risk case). I've had one break so far and I did feel better. (after 1 week lag).
Anyhow, the Tamoxifen cuts you off from your lovely mood supporting oestrogen so it is not surprising you are emotional. That on top of being diagnosed and having surgery, that would make you emotional too. Try googling 'tamoxifen feeling down'. I've learned to live with it (reluctantly) but feel as though I might be feeling better on average the past couple of months. I get a blood test in November to see if I am actually post menapausal (can't wait to find out).
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rumor
Even I feel that way sometimes about Tamox, and I consider myself one of those nauseatingly cherry people! I also see myself bald and without eyebrows every morning, even though my treatment has been over since last August.It is my one moment of depression each day until I step away from the mirror. Yes, I use makep on my brows but that's not my point. I see myself every morning looking like a Martian, reminding me of this ordeal.
Anyhow, I just had my coffee and feel great now! Back to cheery!
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