"Tamoxifen Road" - Support and Encouragement
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So I tried to start Tamoxifen in October and had lots of SEs - ridiculous insomnia, leg pain, dizziness, IBS issues etc....and this was at half dose of 10 mg every other day. MO said to stop for the holidays (and my son's wedding) and re-start in January at an even slower ramp up schedule. So I started at 5 mg every other day, then 5 mg/day. I know this is a crazy low dose but my sensitivity to ANY medication is crazy too. I am a small person and have NEVER been able to tolerate meds. BUT, I was determined to be positive and expect positive results so I was dealing with the insomnia, the depression (which I have never had in my life), the anxiety, the crying for no reason as best I could assuming my body would adjust at some point. Then last Thursday I wake up with the left side of my face numb and tingling. Incidentally during this time I started experiencing what I assumed to be lymphedema symptoms of numbness and tingling in my left arm (affected side), so thought this may be related. I called the MO and they wanted me to go to the ER saying it was not associated with lymphedema and to stop the Tamoxifen. So I went to ER and they did bloodwork, EKG, CT scan w/contrast to rule out stroke and all was clear except fo elevated liver enzymes which I know is an effect of Tamoxifen as well.They also wanted MRI but I chose to wait on that and see how I did. I have not taken the Tamoxifen for 3 days now and today I feel like a new person. The facial tingling stayed through yesterday and still doesn't feel 100% normal today but getting much better. My arm tingling and numbness is better too. Has anyone else had this type of reaction? I will be calling my MO tomorrow for a follow up and am wondering what she will want me to do next. I assume she may want to try a different drug but AI's are not on the table due to osteoporosis. UGH- does it ever end?
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Polkadot1, I just had my first follow up after a month on Tamo, 20 mg. Like you, bad case of insomnia, tingling, needles and pins in legs, arms and scalp, especially at night, driving me crazy. These were the most bothersome SE for me. My MO instructed to stop taking Tamo for a few weeks and start anew with 10mg (I am also on the slender side, bodywise). Right now I feel delightfully good, and grateful for it. Food has taste again and sleep, even though not fully restored, is much, much better. I hope things will improve for you too. Lots of hugs!
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I started tamoxifen December and had bad hip pain so my oncologist stopped tamoxifen after two weeks to do further tests. Tests were negative. I was also experiencing 12-13 hot flashes a day. I am also on the petite slender side. I went back In January and oncologist said to start at 10mg. I have been on for a couple weeks and so far only a few mild hot flashes. Will meet again in February to see about ramping up to 20mg. Maybe it will be better this time.
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I agree with what everyone says re: exercise helps combat side effects! And yoga and stretching is particularly good to combat joint pain.
neeli - I think the nausea will go away for you. I too was nauseous in the first few weeks. The doc said it was the body adjusting to the new hormone. Went away after a few weeks and I’ve been on tamoxifen for over a year now and am doing fine re: no major side effects.
Also for those who are pre-menopausal, you might experience some irregularity in your cycle when you start tamoxifen and that’s totally normal. According to the oncologist and what happened to me in actuality, things hit a stride after around 6 months and if you’re not close to menopause, you period will be on a regular schedule again (for better or worse! I joked to my husband that the one SE I wouldn’t mind is no more periods! Alas, still very regular)
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Hi all, I’ve been on Tamoxifen for 4 years now (one to go!!). I started at 10mg 2x a day and was ok for the first few years. Around the second year I stated experiencing horrible joint pain, like I was 90 with arthritis (I’m 47) . I read it’s one of the side effects and went off it for a month to see. Sure enough my joint pain disappeared after 2 weeks. I’ve taken a few breaks for a month at a time but always went back out of fear that I need this as a preventative. About a year ago I read a study that stated that they never tested women on the dosage for Tamoxifen, meaning it could work just as well at a lower dose with fewer side effects. So I made a decision and cut my dose in half and 99% of my side effects went away. I still get night sweats but not as severe. This was a personal choice and I did not tell my oncologist. My body my choice. Only one year to go!
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Gardengirl72 that’s so interesting! I think I mentioned it earlier in this thread but not recently - so, I’m at half dose (10mg) which might be why I’m tolerating it well. So interesting to hear that 99% of your side effects went away when you cut your dose from 20 to 10mg! Maybe there is something to that because I’ve never experienced joint pain.
There are studies starting to come out re: a 5mg dose being just as effective for early stage as 20mg. I hope more will start to be done.
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I am considering trying 10mg of mine, I've been off my 20mg for over a month. I would like to see case studies, stories, from those who have taken tamoxifen but had it come back - all I see are stats not first hand accounts (I am leery of stats and like to process from personal experiences I hear). That's just me. Just like HPV for my kid, first hand accounts are what helped me make the decision about her receiving that vaccine or not.
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Has anyone felt jittery on Tomixifen? I wake up maybe 2-3 hours after falling asleep and the jitteriness drives me crazy!
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Hello! I’m only on Day 4 of starting Tamoxifen. I’ve been taking it in the morning (20mg.) Last night I had a headache all night mixed with nausea and sadness. Would these be initial side effects? Hoping it’s not something lasts forever because I don’t think I could tolerate feeling this way every day. I’m going to try taking it tonight instead of this AM to see if it helps. Thank you for any input!
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Hello everyone, just an update. I'm 6 months in on 20mg and doing well. After 2-3 months I started to have some pretty horrific knee and hip pain, and felt very creaky in the am. But I started exercising again two months ago and within a couple of weeks the pain was gone! Amazing. So I'm making sure to keep moving. Minor warm "flushes" but no big deal.
Had a transvaginal ultrasound and lining was "5mm consistent with Tamoxifen." Gyno freaked out, but oncologist isn't. We'll do another one in 6 months and see where we are.
I am shedding more hair than usual, but nothing tragic. Oncologist recommended biotin and hairdresser concurred, so we'll see if that helps.
Best of luck to everyone!
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wulfgirl4 Nausea has been a part of mine each time I've tried ( stopped 20 for two months now doing 10) as well as headaches. Unfortunately my sadness wasn't any different depending on if on tamoxifen or not.
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Dear wulfgirl4,
Welcome to the BCO community. We are so glad that you reached out to our members with your questions. We hope that you find support and helpful information here that is readily shared by our community. Keep us posted as to how we can be of assistance as you navigate your way around the boards.
The Mods
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Hello everyone ,
I am new to this site but was looking for someone to talk to that wouldn't look at me like I was crazy ! I started Tamoxifen in July of 2019 and have some issues with it as well. I have degenerative joint disease pretty bad in my hands , ankles , back and knees this medication is making it worse with other side effects such as anxiety. I also now have to go for a D and C because my uterine lining is too thick and they believe it is caused from the medication. I know the medication is important and I plan on staying on it but sometimes I question this decision . Anyone else feel this way ?
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Yes, I feel the same in that I question taking tamoxifen. I have lots of guilt in general, even in childhood, so I feel like I'll 'get in trouble' if my family finds out I stopped it (I started again at half dose). Like what if I'm diagnosed again and they find out I didn't do the tamoxifen? I feel like I'd lose their support cause it'd be 'my fault' since I didn't take the pill. They'd be mad at me and I'd be sick and alone. And I might deserve that. Emotions suck in cancer!! And throw in side effects too and well, it's just a daily battle physically and mentally. My two cents for you.
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Welcome, DVCMomof3! We're so sorry you find yourself here, but we're glad you've joined us, and we hope you find this community to be a source of support. You are definitely not alone, it can be a difficult drug to tolerate for some people. We hope you get some insight and encouragement from others who understand!
The Mods
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This is to you and the others who posted a reply to me last August - I don't know how to respond to multiple people. Actually haven't logged in for months (had to change password) but lately I read something that really freaked me out about my "no tamoxifen" decision. It said just because stage 1 doesn't mean it won't metastasize. And of course that's even WORSE medicines (but not for 10 years, but probably a series of them for 10 years). And I still haven't successfully given up sugar, I know that would in part counter the fact that I'm not doing tamoxifen. I know theoretically the side effects stop if you stop but I took one of the first non-steriodals for a week in 1986 and it left me with dizziness problems for the rest of my life, and I know tamoxifen can also affect the ear. I couldn't live if I was dizzy all the time the way I am sometimes. Plus the blood clot thing still scares me.
I did hear lately that they can give smaller doses, like 5 mg, and it also has a benefit. I'm wondering about that.
Also - this is weird -- I asked my doctor the last time I saw her what that oncotype score was and she said they didn't do it because I didn't want to have chemo. I thought chemo wasn't even suggested at my stage, I didn't think they were basing that on my opinion. And I would have been curious about that score.
I've got to get off sugar.
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Hey Sal462--it's true, your stage doesn't guarantee you will or won't end up with metastasis. That's because you can have tumor cells hiding out, dormant, anywhere in your body. Given the chance to proliferate, they could at any time. Tamoxifen keeps that at bay. I hate taking it, but I continue to press on.
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Actually, tamoxifen reduces the chance of recurrence. It's not a 100% thing.
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That's true, you can still have local or metastatic recurrence while on tamoxifen. I wasn't trying to say it completely prevents it. I think my MO told me it was about a 30% decrease but honestly that was a few years ago and my memory of that appointment is pretty blurry.
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There are smaller doses. I’m on a 10mg dose which my oncologist has OK’d for me. I also need to get off sugar!
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My MO is keeping me on 10 mg, as well, as I had an adverse reaction to 20 mg. I know there are studies supporting it, especially for small, low grade tumors. I still get SEs, but I find them manageable. I think at time about other potential rare SEs, but I see Tamoxifen as one more way to keep at bay this dreadful disease. We are in for a long haul, but I hope we will all benefit from it. Hugs and Love!
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Hello haven’t been on here in a while but I’m curious about something. I’ve been taking Tamoxifen for over 4 years, I have been noticing for a while that my side effects are usually non existent and then sometimes they flare up and I start getting nauseous and dizzy and fatigued for a few days and it disappears ... then maybe a month later it returns.. has anyone had this experience?
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I have been on Tamoxifen for around a year and a half and my joint pain and leg cramps at night has gone away. I do get fatigued in the late afternoons so I try to get everything done early so I can take it easy around dinner time. I wake up 1 or 2 times a night but it’ s nothing new so I deal with it. I am proud to say I am working very hard to cut down on sugar. Gave up my favorite white rice and ripe fruits, pasta, and bread. It’s the hardest thing to do, but I know it is worth it. I actually feel much better not eating sugar, except for I feel hungry all the time.
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Have you always had joint pain ? Or do you have arthritis ? I just went to my general doctor for my arthritis as I have been in more pain then before the Tamoxifen. DR had me re-tested for RA and the levels went from my last test at a 10 ( not positive or high enough for RA) to 14 which is considered positive for RA and can be part of the problem with the pain since starting Tamoxifen ! Though discouraged I am pressing on for answers as it all cant be from the Tamoxifen or at least I hope its not.
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How many of you ladies have had to have a D&C from the Tamoxifen ? I am suppose to go on March 20th for one and everyone I have spoken to says its not a big deal but I have to go to pre surgical testing and its making me kind of nervous.
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I had joint stiffness in my finger before I started to take Tam. I would need to use my other hand to move my finger when it got stuck. I thought it was arthritis but never got it checked as it was manageable. After Tam, I also had feet pain in the morning when I woke up. I started to wear work out shoes in the house as I stand a lot cooking all day and previously did not wear shoes in the house. .. Just slippers. I also got Charlie horse cramps while sleeping. All these SE went away after i cut down on sugar and carbs. I am now on a mission to eat anti-inflammatory and antioxident rich food at every meal. Drinking green tea with lemon juice all day. Etc.etc. I don’t have SE from Tam anymore - except for fatigue later in the day and bad memory - but I am not sure if that is Tam relate
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PebblesV I have to agree re exercise. I kind of resisted exercise for a long while because the doctors kept telling me to do so, and I'm not good at doing as I was told. Seeing as it was a long while since they told me, I started exercising one day because by then it felt like my own decision so I felt in control.
I haven't looked back, feeling sooo much better, a lot of the aches and pains have gone, only symptom I notice is the hot flushes still. Also lost a few kilos (which I just worked out is equivalent to 7 pounds) in the process from the exercise, which is making me feel much more springy and healthy!
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I've been on Tamoxifen for 3 1/2 months now and so far it hasn't been too bad. I'm on it for 10 years so hopefully that doesn't change too much! The chemo I had knocked my period out and I haven't had one for 7 months now. I have a few hot flashes (mostly in the evenings and at night) but they have been tolerable and some constipation as well . One supplement I'm taking that seems to help with the SEs is iodine drops (I take Detoxadine brand from Global Healing Center) - the iodine drops help with having healthy breast and ovary tissue (which will hopefully help prevent a recurrence) and bonuses are also more energy, hair growth, weight maintenance,healthy skin & nails, and good sleep. I've also been focusing on exercising regularly, eating a healthy diet and trying to reduce my stress (definitely easier said than done).
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I totally understand your concern. I am 54 diagnosed July 2016 double mastectomy 3 different types of cancer chemo put me into menopause started tamoxifen 3 years ago now having tests done to see if I have uterine cancer. Ultrasounds and MRI indicate biopsies should be done having that tomorrow. Ob says I will have a hysterectomy either way but they need to determine if I have cancer first.
I was put on tamoxifen the first 12 months because my oncologist said she did not know if I was through menopause or not. Then changed me to arimadex and I could not seem to handle the side effects put me back on tamoxifen oncologist recommended a prophylactic hysterectomy but my obgyn refused. Just praying no cancer and that biopsies are not too bad. I keep telling myself it cant be any worse than some of the tests/procedures I have already been through. Looking forward to the results then moving forward with the hysterectomy
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Nut farmer I am so sorry to hear this!! And this has been potentially caused by Tamoxifen?! In a fair world we'd beat BC and be done, I'm sorry you have more to deal with from and because of BC effects.
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