"Tamoxifen Road" - Support and Encouragement
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Hi Talulah, Instead of going off it completely have you thought of taking a break for 2-weeks then restarting at a lower dose? That is what I did and it really helped. You don't have any info listed. Here is a chart that gives the side effects of the different types of meds. Most don't have a lot of the side effects. http://www.breastcancer.org/treatment/hormonal/com...
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The statistical benefit of tamoxifen is very well established. And metastatic cancer really really sucks.
In my opinion, abandoning hormonal therapy should be a last resort. There are many things you can try before you are there. There's things you can try to stay on tamoxifen (for some women - changing time of day, splitting dose and doing half in morning and half in evening, changing generic brands, going to a lower dose, treatment for specific symptoms, more time for your body to adjust etc), there's other SERMs you can try besides tamoxifen (I'm on toremifene because none of the above worked from for tamoxifen, but toremifene has been fine), and then there's OS+AI - which often has a harsher side effect profile for premenopausal women but not always and could certainly be worth trying.
I struggled with this personally as it became clear to me that I wouldn't be able to stay on tamoxifen, and I didn't yet know about the option to try toremifene. What I kept coming back to was that even if my risk of recurrence without the drug was low (my doc estimated 10-12%), if you get metastatic cancer, you get it 100%. I watched my mother die of it. I know there have been a lot of advances in treatment since then. But.
Anyway, that was my thinking. I would encourage you to keep working on finding a mode of hormonal treatment that works for you. That can be a courageous act too. If in the end you need to abandon it, at least you'll know you gave it the fullest shot you could.
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Me. I took it for three weeks and the side effects greatly interfered with my quality of life. That's reflected in my sig.
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I've been battling with tamoxifen and I've tried it again, but I'm stopping it as of today - I cannot take the anxiety attacks. And the idea of taking another pill to try and ease that...I decided was just too many pills (although I've been on Prozac a few days, they just called and told me it interferes with tamoxifen. Not sure why the doctor or pharmacy didn't catch that day one!) I will continue taking CBD pills for anxiety. We'll see what happens! So again I quit after about two months of 20mg. I feel my body has spoken.
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Togethertolearn, My friend is on Lexapro (escitalopram) 5mg for anxiety and it was recommended to take with Tamoxifen. Have you thought of decreasing the dose of tamoxifen before stopping? After taking a break from Tamoxifen I have decided to stay on 10mg a day. I haven't told my MO as yet. Before I had asked for a script for 10mg of Tamoxifen and took it twice a day. That did help me for a short time. I'm glad I don't have to split the tab in half. You could even try taking 5mg. I don't want to take it either, but my anxiety increases if I don't. BCat40, I don't know how old your Mom was when she had her hysterectomy, but it was the best decision I made. I just can't tolerate any of the bone building meds and didn't want to add anymore side effects. I already have osteoporosis so Tamoxifen was the choice for me.
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How fast do SE of Tamoxifen present themselves. Have been on the pill for about a week and I've had vaginal itching and what may be a yeast infection (?)
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truthfully we are all different and going into tam we are also at different points in our hormone journey. I for example was peri menopausal so they say, no period for a couple of years pre chemo and tam, but the docs have their own chart we fit in I guess. I have been on tam since January 2016 and have no plans to go the entire 5 yrs but covid may interfere with that. I have been reducing dosage due to severe hair loss so I’m down to .5 tablet every other day (20mgs tab) so around 5 mgs we think. when I dropped to this level my hair stopped falling out. My skin is still super dry and I still get cramps at night, who knows right....????
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I have thyroid disease and my hair has almost come back. My fear is Tamoxifen will put me back where I was a year ago (or worse). I may not have to take Tamoxifen for long. Due to coronavirus surgeries were paused. The doc put me on Tamoxifen in case invasive cancer is found after my bilateral and to slow down the DCIS turning into invasive cancer. My hospital is opening up for surgery again. I received a call from the doctor's office that the surgery could be this month or next month.
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After chemo and mastectomy my MO wants me start radiation, tamoxifen 10 yerar and Lupron injection 5 year. I checked side effects, look both are so heavy. I'm thinking take only tamoxifen. Also I read about DIM suplement. Anybody ever take dim with tamoxifen? I need help here. TIA
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Oh well, I'm done with Tamoxifen. In a little more than a week my neck looks like it belongs on a bulldog. My fingers, ankles are also swollen. Not to mention the yeast infection. If this is what happens in a week, I'm done.
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Anyone still getting their period with Tamoxifen? Mine has been so irregular since I went on it. I just finished a personal record-setting 18 day cycle.
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Yup, I still get mine, but the intervals in between periods range anywhere from 5 weeks to 9 weeks. Keeps things interesting I guess...
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gb2115 that's for sure!
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Just got bumped from Tamoxifen to Arimidex. My PA recommended titrating into it by taking every other day for a week or two, then easing into a daily dose.
In the meantime, this brought a chuckle. xD
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Thanks for sharing. 😂
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Miranda I was told to go to Armidex and refused so am staying on Tamoxifen. I did not want the bone pain SE so I made the choice with my onc. Just my opinion. Thanks for the chuckle.
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Lezza, the bone pain is absolutely something I'm going to be watching for, thanks. I'm a massage therapist, so I can't have my hands, elbows, or wrists hurting. Maybe I'll be one of the lucky ones?
But my insomnia over the past month and a half has been horrendous - not good when we're all trying really hard to have healthy immune systems. I'm hopeful that will ease.
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hello flashlight! I was wondering if you are currently premenopausal or postmenopausal. I was on femara for like 9 years when I went into confirmed menopause. I did not want to h9 off the femara but bones got bad. Does Tamoxifen hurt the bones or is it just not as bad as others? I'm curious bc I feel better psychologically being on one. Thank you! Susan
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Hi jcp, I am postmenopausal with osteoporosis. My MO said if I went on say Anastrozole I would then have to be on a bone building med like Prolia. Chemo really did a number on my friend's bones. She has been on Prolia almost 7 years. When I read the research there is a chance of femur/hip fracture when you come off it. That is where my osteoporosis is. I weighed that and the side effects I had while on Fosamax and decided on Tamoxifen. It blocks the effects of estrogen on breast cells but preserves bone strength. Only time will tell my next bone density test is next year. Good luck with your decision! We can only try...….Terry
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Please I need help. I started Tamoxifen in November 2019 and I finished chemo in March 2020. As soon as I stopped chemo, very bad constipation kicked in. My poop is like small small rocks that make the toilet to be blocked. I strain so much to get it out and now my belly aches badly and I know it's due to the constipation. I blended flax seed with chia seed yesternight and this morning but only small poop came out. Thanks for the help
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MsPrecious, what works for me is at least 8 glasses of water, in addition to my morning coffee, every day plus a mid afternoon snack of dried figs and mango. Doesn't have to be mid afternoon but it is in addition to the fruits and veggies with my meals. Less water, no dried fruit, not a good idea for me! Hope this helps.
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Thank you Beaverntx. I'll try it.
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MsPrecious:
If you are experiencing pain then you may have an obstruction and should be seen by a doctor quickly.
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Thanks to everyone. I eventually used dried apricot and plum which yielded nothing but later tried castor oil 2 tablespoon and it pushed it out. I guess I'll be using castor oil for emergencies like that. But I still need something for long-term since tamoxifen will be for 5years.
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msprecious, my dried fruit and water regimen has been daily for the nearly two years I've been taking Tamoxifen. I do notice a difference (not for the better) if for some reason I miss the fruit or don't drink enough water.
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I also find in the summer months that maintaining hydration gets a lot more difficult leading to these side effects. Fun, fun
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Michelle in cornland
I read this is also a thread for those considering taking Tamoxifen. Just want to make sure I'm in the right place since I haven't started it and might not.
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Either the chemo/radiation side effects or the Tamoxifen is kicking my butt. Almost five years of suffering - I'm SO tired of the insomnia, chronic full body joint/muscle pain, sciatica (had it for a year), constipation, hot flashes, vaginal itching (and it's not a yeast infection), etc.... I'm not prone to depression, but this is getting really old and discouraging. I've tried supplements, acupuncture, massage, chiropractic, cupping with no improvement. I ended chemo five years ago... I've been on Tamoxifen for 4 1/2 years since radiation. Oh, and I've gained 20 pounds since starting Tamoxifen... and I don't eat sugar or gluten. So much for having all my fat removed and put in my breasts.
I don't know if quitting Tamoxifen would make me feel better, but I'm seriously considering it. I see my doctor finally tomorrow... several months overdue because of change in insurance and COVID. Maybe I'll try breaking the dose into two 10mg instead of the one 20mg and see if that does anything. I had a hysterectomy before the first cancer diagnosis but kept my ovaries. They don't seem to be able to tell if I'm pre or post menopausal.On the bright side, no hair loss for me from the Tamoxifen. My symptoms started pretty much immediately so if you are feeling good after a few months I'm hopeful for you that you will continue to feel good.
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Klanders - have you considered the BCI test? I am similar timing to you, did over 4 1/2 years on Tamoxifen. My BCI test came back high risk of recurrence, low benefit from continued hormonal therapy. I was very surprised. My MO recommended continuing the Tamox until June to hit the 5 years and then quit. I have an appt next week. About 6 weeks ago, I just quit. Tamoxifen made me feel very flat, no endorphins, no joy. I also experienced short term memory issues, stress incontinence that progressed so that just walking was a stress, weight gain. I figured before I had dementia, incontinence, obesity and depression added to my med chart problem list (at age 53), I would stop the Tamoxifen. What really pushed me over the edge is the concern of blood clots as covid affects the blood vessels and causes blood clots. I have not heard of any increased risk of covid complications on Tamoxifen but I was done for the other reasons and that just pushed me over the edge. The BCI test really helped me feel better about my decision. BTW, 6 weeks later, I feel more like myself, much more energy, not as grumpy, (no significant change in weight yet - dang!) But to my tremendous surprise, the incontinence is much much much better!!! I am hoping my memory will pick up but I am not working now so it is hard to judge. Tamoxifen did knock me out at night from the minute I lay down to the alarm in the morning and I don't think I sleep as heavily now, but I also do a lot less falling asleep sitting down during the day now - down to none!!!! I am still afraid of recurrence, working on diet- investigating DIM and other supplements, upping my vit D even more. I know the risk of recurrence is very real and would never encourage anyone to quit early. But definitely consider getting the BCI test to get more information!!! Love and hugs to you!
Jenny
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