"Tamoxifen Road" - Support and Encouragement
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great news goldfish! I'm traveling outside the country, so trying to balance ramping it up with not having issues until I get back home. I will probably ramp it up a little faster here, then faster at home. I'd like to get to 15 or 20 mg relatively soon, but not positive I will stay there once I lose weight, am exercising regularly and have changed my diet.
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Just stopping in to report that it has been 10 weeks since I started Tamoxifen. I started at 5mg daily for about 2 weeks, then 10 mg daily for about 4 weeks, and now I am doing 10 mg every other night and 20 mg every other night. I haven't had any side effects taking it at night with magnesium. In face, my oncologist is going to do cyp2d6 testing on me if I continue to not have any side effects by the time I see her again in 3 months. I hope that my lack of side effects is just good luck...it would be frustrating to know I am not getting significant protection because I don't metabolize the medicine.
I am continuing to lose weight to help minimize my estrogen exposure as well.
Good luck to everyone as you continue on this crappy journey we got forced to go on....
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Meeko, if you aren't metabolizing this, in addition to possibly aromatose inhibitors (which I don't want to take as I have osteoporosis), some foods act similarly to tamoxifen including white button mushrooms and soy milk.
I forgot about taking magnesium w/ tamoxifen - why is that? My calcium pills include magnesium and I could take two w/ dinner instead of one.
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I am not sure if I am even in the right place. Just joined this whole organization ten minutes ago. Was Googling “ how to avoid tamoxifen": and somehow it led here. I have been avoiding it since I guess April, when I finished radiation but didn't realize I had an oncologist appt. should say up til then it all seemed so much easier than expected, all the things I thought would cause pain - a shot near the nipple to inject dye, are you kidding me? I'm not doing this - all those things were painless. Even slight complication after lumpectomy no big deal. But I knew it couldn't even all there was, No one would be afraid of breast cancer if that was all it was. There had to be another shoe to drop. Then in late May I finally saw oncologist and was told about the other shoe: tamoxifen.
It's not just the stroke and blood clots I don't want to worry about. It's the joint pain, have had bad knees but try to ski anyway, don't need more pain. It's the hair loss, already hair thin, in fact whole life have dealt w too little estrogen, how I got ER positive I don't know, I certainly never had the rt hip/waist ratio for estrogen indicating fertility. I could weigh 115 and my waist is still 28" but I have NO ass. Plus skin struggles. PCOS discovered as culprit in early 30s. So estrogen it seemed was never my ally, how did it become my enemy? Feel like I need every drop I have. Don't even want to deal with stinging from peeing from no estrogen. But what really scares me is I've read tamoxifen causes tinnitus and hearing loss which means it affect ears. I get dizzy just from non-steroidals and alcohol, haven't had a drink in decades, too much dizziness next two weeks.
THey say the side effects go away when you stop but if I am left dizzy it will be as bad as cancer. Plus I feel cancer you can watch out for, a stroke just attacks without warning.yet now it seems I would be alone if I decided to just say no, that everyone at least tries it. Maybe it's too late already, having gone 6 post op months without it, the new cancer has already taken shape and I'll be risking the side effects too late for it to eve help.
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Hi Sal462,
I don't think it's too late to start Tamoxifen. I had an off and on start with it. Started 3 months after radiation, took for 4 months until side effects sort of forced me to have surgery, was off of it before/during/after surgery for 4 months, then restarted and have been taking for 6 months. I don't like dealing with the side effects either and hope it's worth taking as there's no way to tell if it's working. That's what bothers me.
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Dorthy, I was taking Magnesium precancer to help with migraines, and then I read somewhere that taking it at night could help with hot flashes (honestly, I don't even remember if I read that from reputable source). Since I was already taking it, it was easy to move it from the morning to the evening. Of course, I have no idea if makes a difference, but it definitely helped with my headaches.
Blah...I sure don't want to have to consider AIs, but I will jump that hurdle if I need to.
I am doing a lot of dietary changes to help with the estrogen, and I have lost 23 pounds since diagnosis (with a plan to try to lose 7 more), so I am doing other things to help reduce my recurrence risk. All we can do is what we can do, right?
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Hi DorothyB, It sounds like you are doing very well on the Tamoxifen. I have continued taking 10mg in the AM and 10mg after dinner and so far very few side effects. I also had nausea for a few days and that went away. My eye doctor said with the 20mg dose she hasn't seen any issues with Tamoxifen. They look for protein spots on the retina. Most people have the start of cataracts at age 50 and definitely at age 60. I had cataract surgery last year before the cancer diagnosis and I wish I had done it sooner. I never had dry eyes and fish oil seems to be helping with this side effect. So far so good except for the D&C scheduled this week. I'm hoping my doctor is just being overcautious. I don't have any symptoms.
Meeko1452, Great job on the weight loss! How did you do it? I'm hoping to do the free Livestrong program at the Y at the end of Sept. I also take magnesium.
Sal462, I think you can start at any time. I understand how you feel. I started and stopped because of the side effects. Then I decided I would start slow and work up to the full dose. This site gave me a lot of help. Wishing you well.
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Sal 426, it's not too late to start tamoxifen. If you have any new tumor cell growth starting it will starve the cells which is a good thing.
It's super scary to read about side effects. I have side effects which I don't hide and choose to write about. But, I still value what the tamoxifen is doing for me, so in essence I accept and deal with side effects. It's not like I thought my life would be at 41, but I am alive. I have a stage 4 relative and really don't want that to happen to me. I had a positive node so I fear recurrence.
Lots of women don't get side effects, they just aren't online writing about it to get support from others like some of us are. You don't know until you try and you can always stop taking it.
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Thanks. I am glad I found this site. I still don't understand the statistics, one place i read 96% of the women who take it don't have recurrence and 93% of those who DON"T take it don't have recurrence, that's only 3%. How do they turn that intio 37 - 67% more recurrence for those who don't take it. Even my oncologist, very pro-tamoxifen, said -- we were using a 45% lower risk of recurrence I read somewhere -- anyway, she said the 45% isn't really 45%, it's more like 5 or 10%. If I just had an actual number I'd feel much better. for 3% it's not worth it to me, 3% is like the same risk of stroke if you do take it.
The other thing is someone said -- I think here -- the risk of clots is the "same as birth control pills." Well I decided after 3 wks and some leg cramps NOT to take birth control pills, there were a few safe alternatives. Here there is no safe alternative, although i am thinking the diet thing. Finally went off sugar more than ever in life -- didn't manage right after dx even tho read Joan Lunden book where she said sugar is "jet fuel for cancer." But when I decided not to do tamoxifen I said to self you better go off sugar to balance out higher risk. Then just yesterday I read that if you leave 13 hours between dinner and breakfast you reduce risk by 37%. So I tried that last nightt, much as I love night snacks. Slept really well and was very hungry for breakfast. So if I can reduce risk by 37% with the 13 hour fast maybe it will balance the increase of no tamoxifen.
What kills me is I knew it couldn't be as "easy" as it seemed it beginning with sugery and radiation, kept saying to people "this is eerily easy, something is going to happen, it couldn't be this easy." And here it is. One thing I wish I hadn't been right about.
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Sal - I agree w/ everything that gb2115 said. I have the same fears you have. There is a forum section here for people who are following medical advice, but also doing other things like lifestyle (diet, exercise, etc) changes. You might want to read / post there. I've been doing a lot of reading and have found that soy (but maybe not processed like soyburgers, instead edamame and soy milk) and white button mushrooms (as well as other foods) can mimic the benefits of tamoxifen w/ regards to cancer. Continue researching diet and exercise and intermittent fasting. I don't want to hijack this thread, but will post a couple of links in the other forum later today. (If I forget, feel free to post there and that will remind me)
In response to others who have responded to me - I keep forgetting that I do have a couple of other intermittent side effects in addition to the nausea. Two nights ago (the night after taking extra tamoxifen), I had two mild hot flashes. I have had them several times since starting tamoxifen even thought I hadn't had any for a few years. I have also had cramps in my feet - but had those sometimes pre-diagnosis.
Tonight I will add 1/2 of a 10 mg tablet to my normal 10 mg tablet. I plan to do 15 mg, 15 mg, 10 mg and repeat that for a while.
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Sal - this is the section of the forum for those using diet, exercise, etc in addition to medical treatment https://community.breastcancer.org/forum/79
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I get the cramps sometimes as well... usually in my ankles and shins. Sometimes the bottom of my foot. Kinda thought it was plantar fasciitis starting but it was awfully cramp like pain down there with a peaking ebb and flow. Had one in my ribcage the other day, that felt weird. Doc said to try magnesium so I picked up some of that natural calm powder...we'll see!!
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Eat bananas too. They help with cramps.
I also have on and on some dark brown discharge.
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Took an extra tamoxifen yesterday morning (accidentally - I had pulled it out and set it aside to split and take have w/ dinner, but then couldn't find it so decided I took it). So the nausea this morning was the worst it has been and I ended up vomiting 3 times in maybe an hour. The hot flashes didn't happen overnight, but moved to mid-morning today.
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Wow DorothyB: That just shows you how strong Tamoxifen is. I have been on the 20 mg for 4 weeks now and this is the first day of any noticable side effects. Just feeling tired & nauseated today. I have had hot flash all along but I can deal with them, more like gradual warm flushes all over. Hang in there & good luck.
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thanks for posting this. Im so severely confused at this point as to WHAT hormone therapy I need, NONE of the options look inviting, to say the least, but I want to TRY to stop this cancer by taking it.Being brain fogged from so much info,surgeries, illnesses, LIFE IN GENERAL , all the while being terrified it might all be for nothing...then the realization that it might be ending with that I wasted a year or more of my life taking something that made me so weak and ill that there is NO QOL. I was tooling along just FINE before they found this wretched cancer now I got this,..I scared off everyone because of the gripping CRAZY from never knowing one minute to the next how I feel emotionally or physically and just wanting to have some control. I could keep going.. but Im preaching to the choir. I am NOT a survivor. Im not a warrior, im scared. your post made me see, I can make a choice. other than the choice I was getting ready to take, to not taking anything. my husband ran his finger along my bicep the other day. and I just cried.. it was the first NICE feeling ive had since February. the first touch that didnt lead to pain.my hat is off to all of you ladies. if this is early stage and this is what I have to deal with?Im just trying to work, to be the cool sister, aunt, mom, friend, spouse .and ive become a shell of my former self. you are some bad asses! sorry ,Im having a pity party . and you are involuntarily invited..
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Flashlight, the Livestrong program will be great. Building muscle is so important. I have been doing intermittent fasting (one 30-36 hour fast per week, and 14 hour fasts the other days. My husband is doing it as well, with helps tremendously. Good luck!
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I'm looking forward to starting the LiveStrong program in Sept.
Notarobot - I totally agree about wanting to be in control. For me, the emotional turning point was once I got my oncotype and was at the point of making a decision on chemo vs no chemo. It doesn't make rational sense, but doing the searching online for information, looking at the various things I can do to help prevent recurrence (for me, chemo, hormone replacement, weight loss, cardio exercise, strength training, changes to diet, livestrong, reading books for info, etc) helped me.
I did opt out of chemo, decided that (for me) tamoxifen would be better than the aromatose inhibitors so determined to make it work at some dosage, am working on weight loss and diet changes, walked at least 30 minutes 4 times in the last 7 days, met w/ PT and have strength training exercises but haven't started them, sent e-mails to the two closest YMCA locations as they didn't list any livestrong programs and got an e-mail just before leaving the country that they are starting a course the first week of Sept., still reading and listening to podcasts to learn more about diet as I incorporate more fruits, veggies, plant proteins into my diet, etc.
From everything I have read, including info from those who have taken the course, I highly recommend seeing if they have a livestrong program in your area. I also talked with the social work person at my cancer center a couple of times before I got my oncotype report. It was helpful just having someone to talk to who understands.
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Well, I spoke too soon. I went for a check up with my PCP this week, and my liver enzymes, which have always been normal, are elevated for the first time ever. I don't drink or take any hepatotoxic drugs, and I have lost weight, so the tamoxifen seems to be the only likely culprit. I will get a copy of the labs faxed to my medical oncologist, but for now I am going to drop back to 5 mg per day for now. I'm so irritated and disappointed. On a positive note, my mammogram on the remaining breast was normal!
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Thanks. Just saw this now. Soy such a conundrum for me -- years ago I met a young breast cancer patient and told her my sister had had pre-menopause and she said don't eat soy. And I know it's a phyto-estrogen. And yet you are not the first person to say it actually helps.
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Sal, it is hard because you can find both "don't eat soy" and "soy is beneficial". If you google it using soy and breast cancer, etc you will find lots of links. If you read the studies, they all seem to say either "it doesn't hurt" or "it is beneficial". I've also read a few books including "Breasts Your Owner's Manual" by Funk (I think title / author are correct) and "Eat to Beat Disease: The New Science of How Your Body can Heal Itself" by Li and they agree with most of what I've found on the internet - which is that soy in a more unprocessed state (including edamame and soy milk) are beneficial. There doesn't seem to be strong evidence that things like "soy burgers" are beneficial. I'm drinking one cup of soy milk as part of a smoothie each morning. Some of what I've read seems to indicate "the more the better", but I'm not as secure in that.
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Sal - just found this (aicr is American Institute for Cancer Research) https://www.aicr.org/patients-survivors/healthy-or-harmful/soy.html
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I think everything in moderation is ok. There simply isn't anything that is a solid fact. Quality of life > taking things you enjoy away.
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I was googling tamoxifen and came across a couple of your posts. I am also weighing the pros and cons of tamoxifen. My tumor was 2.5 mm, low grade, no lymph node involvement , estrogen/progesterone +, / Neg HERs and negative for genetic risk. I had a lumpectomy and am still doing radiation. My oncologist told me she felt comfortable letting me decide if i want to take tamoxifen because I’m lower risk. She said without tam my left breast would be 4%, my healthy breast 3% and the rest of my body 1% which equals 8% risk total. So tam would bring me down to 4%.
I am worried about hair thinning, uterine cancer, blood clots, vaginal atrophy, fat redistribution, etc. Plus accelerated skin aging. I turn 49 soon and am still divorced so this is a bummer to not already have a supportive husband.
Your body type sounds like mine. Same waist with small butt. I don’t want to lose more of my hips and butt and gain it in the stomach area. Seems like all my concerns are mostly vainity but I know how shallow men are, even the ones with good hearts.
I am also worried about hearing loss. I asked my dr about it and she said she never heard of that? I also have tintinitis and mild hearing loss from my prior job.
So the dilemma you said of feeling guilty if you don’t take it and get it again is my issue as well.
Where did you read that fasting 13 hours decreases risk? I have always eaten late and even will get up at 3 am to eat something because I don’t like long periods without food. Maybe I will fast if it really helps.
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I'm feeling confused reading about so many people having joint aches and pains on Tamoxifen, because my doctor took me off Anastrazole a month ago due the extreme joint pains, and she wants me to start on Tamoxifen in a couple of weeks time. It doesn't sound like it is even going to help.
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Hi WorryThePooh, Everyone is different. My daughter's friend who is in her late 30's couldn't tolerate Anastrazole. She is doing very well on Tamoxifen. Maybe take a low dose so your body can get used to it like many of us did. Good luck!!
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WorryThePooh: I tried all 3 aromatase inhibitors with terrible leg pain. I switched to Tamoxifen 6 weeks ago, full 20 mg dose daily, no more leg pains. The only side effects so far only mild nausea 3-4 mornings and a few headaches. Doing so much better on the Tamoxifen.
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Hi everyone,
I am older than some of you (65). I have been on Tamoxifen a total of about 6 1/2 years. My first dx was in 2010, I had more SE when I took it before menopause. My GYN recommended a hysterectomy about a year into treatment ( for several different issues) so once that took place some of the SE improved.
I had a second dx in 2014 and my MOput me on Arimidex. I didn't do well at all with that...many joint issues. I went off the AI and back on Tamoxifen. I have been able to tolerate it but I do admit I'm looking forward to being done with it. I also take (generic) Effexor to help with hot flashes and mood swings. Right now I'd say I'm doing ok...fatigue seems to be my biggest problem...but some of that could be age😉
This drug really seems to affect people differently....I had one friend who couldn't take it at all, another that had severe nausea and some ( like me) who tolerate it one day at the time. If you get nauseous, try taking it at night, right before bed. I also recommend taking half in the morning and half at night if your doctor agrees.
Hope this helps; I have had 4 different Oncologists since my first dx and each viewed Tamoxifen about the same.
Ellen
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Hi WorryThePooh, I was on Arimidex for 2.5 years and got so tired of living with the side effects (joint aches/swelling, hair loss, osteopenia, dry everything, aging on over-drive) that I decided to go off on my own. My MO talked me into trying Tamoxifen, which was not my plan, and I've been on it for 4 months now. While I do have some hot flashes again, in general I feel SO MUCH BETTER. My skin is coming back to life, my hair is filling back in, less vaginal dryness, joint pain and stiffness not noticeable, and I love knowing that it is good for my bones.
For the record I have been exercising more which helps with joint issues and hot flashes. I believe the hot flashes would subside even more if I stopped drinking alcohol but I love wine too much. I have always taken magnesium so I don't know what that does for side effects.
Best wishes to everyone. You have been through so much. Be kind to yourself and remember that you are not alone.
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Thanks Ellen and Monica.
I was taking 1/2 minimum dose of Effexor, but it didn't make it into my bag when I went to Panama for 2 weeks, so I just didn't start taking it again. I think I will either restart it or possible try cbd (have never used it and still reading about possible issues taking it w/ tamoxifen) to help with anxiety, hot flashes, depression, etc.
I am exercising every day - but not huge amounts. I walked 30 min 6 times in the last 9 days. Today I only walked 20 minutes. I rode my horse for over an hour and a half one day. The last day I didn't do any exercise.
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