Bottle o Tamoxifen
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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?
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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!
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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.
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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
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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’
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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.
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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...
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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.
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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.
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Wow, Rae, you really must be ready for some calm. Here's rooting for that trip to the Pink Princess as soon as possible!
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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.
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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.
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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 .
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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.
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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.
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Thanks Georgia, I just lost my day from taking two gravel. 😴😴 Oops, note to self by the non droswy kind next time!
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vampeyes-that’s what I was going to recommend - the non-drowsy kind!
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So today I have waited to take tamox until I have eaten, maybe this will make a difference.... we shall see!
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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!
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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
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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.
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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?
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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!
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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!0
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Skiboots42 - I hope your mood changes do improve. I have been on Tamoxifen for 2.5 years and I feel that it is making me gloomy and anxious/sensitive. However I think it has gradually got better over the months and particularly the last couple of months, because I remember some very intense dark times that I just don't get now. I'd be very happy if I really did properly improve. The trouble is everyone seems to have such a wide variety of side effects and your reaction and how side effects come and go will be unique to you. Weirdly I have been lucky with other typical side effects like hot flushes and joint aches. Also you don't know how your own changing hormones or circumstances are making you feel.
To cope I have negotiated a one month break from Tamoxifen once a year, (I have a pretty low risk case). I've had one break so far and I did feel better. I would not want to recommend not taking Tamoxifen though because it might make it easier for the cancer to come back. I'm just taking a risk because basically I need the break to be able to carry on. You can do all the usual healthy eating, low caffeine/alcohol and exercise/treating yourself stuff to help you feel better. I'm currently am trying to read a book on mindfulness (for what it is worth) but can't get round to concentrating on it, how ironic
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I took with food this am and no issues of nausea - yay! Learn the hard way, so glad for all you wonderful women on this forum to help point me in the right direction!
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I stopped Tamoxifen for a month due to hot flashes every two hours and a tingling numb face, arms and legs and headaches. I also felt like I had ants crawling on me. I was not sleeping and stressed. I still have hot flashes, but nothing like the ones I was having, that left me a sweating mess every couple hours. The first two weeks nothing changed, but then it was like a dark cloud lifting. I’ve come to the end of the month and feel like my old self. I feel the best I’ve felt since my diagnosis.
I dread going back on and plan to speak with my MO before starting again. My own research reveals that tamoxifen decreases my chance of recurrence by very little - I’m just really unsure at this point. I just hate my QOL on it.
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VL22, have you had genetic testing? There is now evidence that a certain gene (CYP2D6) makes women "poor metabolizers" of Tamoxifen. So if you had test results for that you would know if it's not helping you, so you could consider going off or switching to an AI. Link below.
I turned out to be a normal metabolizer which helped me decide to suck it up and stay on the big T train for at least two years.
https://www.ncbi.nlm.nih.gov/books/NBK247013/
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I found a very informative website explaining EXACTLY how Tamoxifen works, what it does and what it doesn't do.
http://www.imaginis.com/breast-cancer-treatment/ba...
Tamoxifen is an "anti-estrogen" and works by competing with estrogen to bind to estrogen receptors in breast cancer cells. Tamoxifen is formally known as a selective estrogen receptor modulator (SERM). By blocking estrogen in the breast, tamoxifen helps slow the growth and reproduction of breast cancer cells.
While tamoxifen fights estrogen in breast cancer cells, it also mimics the positive effects of estrogen in other body systems. Post-menopausal women who take tamoxifen may decrease their risk of heart disease or osteoporosis (a degenerative bone disease) without having to use hormone replacement therapy (HRT).
Several studies have also shown the benefit of tamoxifen in preventing breast cancer is age-related. Women under 40 years of age typically show the least response to tamoxifen, women between the ages of 40 and 50 years of age show some response, and women over 50 typically benefit most from tamoxifen. In fact, early-stage breast cancer patients over 50 years of age who are treated with tamoxifen may be able to significantly reduce (or sometimes completely eliminate) the size of their breast tumors so that surgeons may perform lumpectomy instead of mastectomy. Researchers are not certain why young women do not respond as well to tamoxifen but believe it may be related to the amount of estrogen produced in their body. When a woman reaches menopause (typically around 50 years of age), her body stops producing estrogen.
I don't understand why some MOs prescribe AIs in place of Tamoxifen for post-menopausal women....
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Paco- Great article! To answer your question,MOs prescribe AIs instead because they are significantly more effective (by about 13%) at reducing recurrence risk than tamoxifen as shown in multiple head to head clinical trials. I'm amazed that more MOs don't prescribe an ovary suppressant + an AI for pre-menopausal women.
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