Bottle 'o Tamoxifen

lala1

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.

nonomimi5

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.

RobinJ3024

I’ve been on Tamoxifen 9 days now. And I’m an emotional wreak. Is anyone else crying all the time

runor

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.

Catkin

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).

Scrafgal

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!

nonomimi5

I am 54 and my period stopped a couple of years ago. However, after a blood test, MO said I am not 100% post menopausal and gave me Tamo last week. I don't feel any SE except for occasional fatigue, and maybe a little more hair loss. How do I know it's working and if this is the right med for me?

Beaverntx

nonomimi, I'm 77, more than two decades past menopause, and taking Tamoxifen! I read extensively on Tamo vs AIs and had a discussion with SO who is following me. The decision was that Tamoxifen was the best choice for me due to a history of osteopenia, even though Tamoxifen is generally described as being for premenopausal women. I started Tamo about a month ago and am also taking Loratadine (generic Claritin) daily. I take the Tamoxifen after my evening meal, as suggested by my pharmacist. So far, so good with little to no SEs. Guess we can only know it is working when we do not have a recurrence--I'm looking at it as no news is good news.

As for cheery vs grumpy: Since my BC diagnosis I've made major lifestyle changes. Nutrition is focused on lean protein (no red or processed meats) and at least 5 servings of fruits/vegetables a day, typically divided into three small meals and a snack each day. Also, my former couch potato self is now walking at least 10,000 steps a day. Other forms of exercise will be added once I am fully healed from recent abdominal surgery--still restricted from "vigorous exercise" from that. I feel good, have lost over 20 pounds, blood pressure is down.

Also, I rejoice that while cancer has not been eliminated there are so many better treatment options available than when I graduated with a degree in nursing many decades ago. Back then my cancer would not have been discovered until it could be felt and surgery would have been a radical mastectomy and likely lymphedema without the hormone blockers follow-up.

All in all, I am glad to see the sun each day and thankful that having a breast cancer diagnosis has been more of a bump in the road than a total detour of my life!

Scrafgal

If you are not 100% menopausal you don't want to take an AI because that would increase your VC risk. I am 52 and trending toward menopause but not there yet either.

Rae7200

My primary care doc (internist - “pill-pusher extraordinaire”) said to go off biotin one month befor having blood tests for thyroid, so it doesn’t screw up the results. I stopped biotin on 11/28/17, after the preops for the BC recurrence (3 years and one weekk after my initial diagnosis) lumpectomy in 12/2017, my other regularly anticipated blood tests for my cardiologist, and other surgeries, including recent cataract surgeries. I started tamoxifen on 4/15/18, which was a few weeks after the end of 5 weeks of radiation. (I wanted to make sure I could differentiate between fatigue from radiation and fatigue as a SE from tamox.)

My hair is really thin on top now, and I’m getting the beginning of a really thin patch where the beginning of a bald spot would be. My mother, who died at age 93, had male pattern baldness. Love what I have to look forwatd to. It’s a good thing I had thick hair as a child.

I couldn’t stay on tamoxifen the first time because of night sweats hot — 6-8/night. (The Effexor at 37.5 mg keeps the hot flashes and other menopausal symptoms at bay.). I couldn’t get into REM sleep. I tried acupuncture, black cohosh, increasing Effexor to full depression levels — no joy. My Oncotype was 13, so I took the gamble, and lost. I am determined to make the tamox work this time with the recurrence.

Can anyone tell me how to automatically put my surgery and hormone history at the bottom like a signature block? I read the intro stuff, but must have missed it, and I really don’t feel like typing my history each time, or copying and pasting from another app.

Rae7200

Stage I, Grade 2, ER+ PR+ HER-, KI-67 15%:

Lumpectomy, 19 treatments radiation, 4-5 months tamoxifen

Recurrence after 3 yrs 1 week L axilla, profile same except KI-67 >30% lumpectomy, 5 weeks radiation, tamoxifen (5 mg) 5-10 years

Lula73

Rae- to get your info to show automatically:

1) click ‘my profile’ at the top of the page

2) click ‘my diagnosis’ and follow the instructions to add them

3) click ‘my treatments’ and follow instructions to add them

4) click either ‘my diagnosis’ or ‘my treatments’ again and click the settings link. Change your treatment and diagnosis information to ‘public’

RobinJ3024

Runor and Catkin - THANKS. You have me thinking and it might just be a combination of both. I some mild depression for which I take Celexa (which doc told me as actually a drug that helps prevent hot flashes). And then add on what's going on in other aspects of my life, it's no wonder I'm emotional.

My twin daughters (my only children) are heading off to college in a few weeks. I know I'm going to be lonely without them, and in the past 6 months or so, I've been pumping myself up for the "next chapter" of life with hubbie. And then, I find out I have cancer. Logically, I know I'll be fine, that life goes on, blah, blah, blah, but THIS is NOT what I had planned for this point of my life.

So, you've given me something to think about. I might just have to buy those "F" Cancer socks I found on Amazon. Maybe that will make me feel bada$$ enough to get past this mood.

Georgia1

Robin, my current badass slogan is "Cancer touched my breast so I kicked its ass!" I love it so much that I've gotten it put on aprons for myself and two friends who had bouts with BC. The coffee cup option is probably next...

Beaverntx

RobinJ, Love the socks! Give yourself some time. You have a major change in your life coming up, you are only three months out from that nasty surprise and not quite a month from major surgery. All of these take some mental and emotional adjustment and the BC treatment adds physical adjustment on top of that. Things will level out. I certainly wasn't ready to "get on with the rest of my life" less than a month after surgery; I'm almost there now at six months after surgery--will have what should be my last visit with the RO next week and am hoping to establish whatever my new pattern will be after that.

Rae7200

Thanks, Lula73, for the advice about getting history into the signature block! It took me a while to untangle everything, but I think I finally got it done! We'll see if it works!

My tamoxifen surprise for the day was my thinning hair. I'd been off Biotin since 11/28/17, since it interferes with the TSH and other thyroid studies. I get those done every 3-4 months + preoperatively, and there have been a lot of pre-ops over the last 8 months. I added 2 cataract surgeries to my usual mix, so rather than going on biotin for 2 weeks and going off for 6 or some other ridiculous timetable, I figured I'd just stop until the surgeries stopped for a bit. Well, I took a top down look, and I almost have a complete bald spot on top. My mother, who died at age 93, had male pattern baldness, as do both of my brothers, and guess who has it, too! I'd been on spironolactone 100 mg for blood pressure for about 6-8 months, so that really helped, but a few months ago, my cardiologist reduced that back to the 50 mg dose I'd been on before, so there went that nice assist for my hair. I'd tried Rogaine back in the day when it first became a problem, but it just increased the hair along my jawline and my mustache, which meant more years of electrolysis (ouch!) and later, laser treatments (much better if you find a really good practitioner). My last surgery is my upcoming back surgery, TBD. I meet with my back surgeon on 7/23. I have scoliosis (don't know where that came from), and central canal stenosis which has progressed over the last 8 or 9 years from mild to moderate to moderate to severe. Everything was under control for about 8 years after 2 series of spinal injections, until about 8 months ago, when my husband had to have almost immediate back surgery as a result of a cyst in his lumbar back. In being a caretaker for him, I wound up neglecting myself, and my back problems came roaring back with a vengeance. So it's been an interesting 6-8 months, with the BC recurrence, all of this, and did I mention the 3 surgeries in 3 or 4 months on my R middle finger when I tried to become bionic but it didn't quite work out? I'm ready for some calm. After the back surgery and the PT that will undoubtedly go with it, we're going back to Hawaii (our umpteenth trip) to stay in the Tower at the Royal Hawaiian (The Pink Princess) and be totally pampered. We actually love Kauaii more than Oahu, but it doesn't have the Pink Princess.

Beaverntx

Wow, Rae, you really must be ready for some calm. Here's rooting for that trip to the Pink Princess as soon as possible!

Lula73

Rae- Yay!! The auto signature worked!! On the hair, there’s another product out there called It Works that was recommended to me if the biotin didn’t work. You may want to look into it.

vampeyes

Anyone with Nausea? 7 weeks into Tamoxifen and nausea started. Gravel is my new best friend. I have had something love this before, a reaction to a med I was on so now I am wondering if it's Tamox. So many things it could be, PMS, dietary change, stress. Any helpful tips would be appreciated.

Rae7200

Thanks, Beaverntx - and how! Where are you in Texas? I was a Fed in El Paso in 1970-71.

Thanks, Lula! It turns out the active ingredient in It Works is the Biotin that I have to avoid for 4 weeks before my thyroid tests. I get it my biotin from Superior Source 5000 mcg and cut them in half for 2500 mg, the daily amount my dermarologist recomends. They are teeny, tiny, dissolve on/under the tongue. I get it on Amazon for around $11 for a bottle of 100 — much, much cheaper than It Works.

I think I’m going to restart the biotin, even knowing I’ll have to stop it fairly soon. I expect the back sirgery to be late August or early September, so I’ll have to stop about 2 - 3 weeks before for the blood work. Maybe getting some stimulation of the follicles might help get them ready for when I start again and stay on for a few months? I live with hope for my hair...

We’re off to Indianapolis on Tuesday the 17th to pay our respects to the widow and family of my husband’s best friend from high school. We’ll also get to see another friend of his, Chris, computer programmer extraordinaire. Chris has a severe form of muscular dystrophy, and was never expected tp live past 21. He’s now in his 50s, and does computer design. He’s paralyzed from his neck down, and has very limited motion. He has written numerous articles and I think books also, designs elaborate Christmas cards....all wheelchair bound, and Ithink using a stylus and an adadptive computer. He consults with my husband on a lot of complex computer stuff. He’s an amazing guy, and I’m looking forward to meeting him .

Georgia1

Vampeyes, I did not experience any nausea but I know some women do; they say it goes away in a few weeks so stay strong. Others will have some advice I'm sure but I think taking it at night helps a lot.

Beaverntx

Rae, I'm between Austin and San Antonio, long ways from El Paso. Used to live in California so went through El Paso lots of times as we traveled to visit our Texas family, good ol' Interstate 10.

vampeyes

Thanks Georgia, I just lost my day from taking two gravel. 😴😴 Oops, note to self by the non droswy kind next time!

Lula73

vampeyes-that’s what I was going to recommend - the non-drowsy kind!

vampeyes

So today I have waited to take tamox until I have eaten, maybe this will make a difference.... we shall see!

Vargadoll

Vampeyes- I take mine after dinner. The only side effect I really have is I have to pee alot more on Tamoxifen. Long story but I was switched to Anastrozole in March took it 3 months...no more urgent need to pee and I lost 16 pounds. Switched back to Tamoxifen in June no weight gain but that "I have to pee NOW!!!" Is back!

Skiboots42

I have been on Tamox for about a month and I feel like all of the joy has been sucked out of my life. I am numb to emotions and very irritable. Those who have been on it for a while do the mood changes ever improve over time? I do not know if I can go through life for 5 years feeling this way. I was a really positive fun person

Pi-Xi

That's an interesting observation, Vargadoll! I have noticed some urgency, but I chalked it up to drinking more water because I'm always dehydrated. Now, you have me thinking.

vampeyes, I take tamoxifen with dinner. I have noticed the bottle says to take with food. I had some very minor nausea the first few days, but not since. I hope you are feeling better soon. You have had a lot going on.

Trvler

I might be the odd one out here but I find my moods are more stable than before. I don't really get PMS anymore like before. I used to have one day of really crabby.

Runor: I have a question for you. How did you decide on the dose you are taking? I know your reasoning about not taking the 20 but how did you decide on 10 and then 2 days a week 20? Also, do you split the pill? I remember seeing something about that being dangerous?

Vargadoll

Pi-Xi- it was so clear to me the connection! I have always drank alot of water. (It's basically 65-82 oz a day) and never had an issue before. I had been on Tamoxifen for exactly a year when I was switched to Anastrozole. I was so tired before the Anastrozole but damn what a year it had been! I am the winner of LE truncal to! Anyway, after my little 2 and half months on Anastrozole I feel more like "me" than I have in over a year. I have been back on the Tamoxifen a month and other than the urgency to pee I still feel more like normal "me" than the new damaged me!

Pi-Xi

Vargadoll, I am so happy to hear that you are feeling more like the "normal" you! My MO is happy for me to be on tamoxifen despite those percentage points I might get on OS + AI. My guess is he sees a lot. I was having a pretty rough time on tamoxifen before my February break. It has been much better since!