Bottle o Tamoxifen
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Hey Mareny,
Do your best not to borrow trouble. For many women it's like a sugar pill. For others, it has side effects that go away either by themselves with time or with a little pharmaceutical help. Others can solve the issue by playing with the timing, splitting the dose, or trying different generic bands. It's only a minority of us who can't tolerate it, and for us there are other hormonal options (not only OS+AI, but also SERMs like toremifene, which is what my oncologist agreed to for me and which is working out great so far).
Hang in there! The uncertainty is the hardest part.
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I’ve posted this question on two other boards so forgive me for duplication. Friday I started bleeding. Last we checked, 6 months the ago I was in menopause. Hadn’t had a period for 3 years (since chemo) I’m taking 10 mg of tamoxifen and have one ovary. I’m bleeding heavier than my periods ever were. Anyone have this experience or advice? I’ll call my ONCO and the OB today.
Bird
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You are starting the wisest course which is to confer with your Onc and Gyno. I too had a heavy bleeding episode about 3 months in to taking Tamoxifen. It lasted for forty days (I call it my biblical period). I think my hormones were just dancing around, doing a final clean out maybe? Did get a pelvic ultrasound as well as an attempt at a uterine biopsy. Nothing suspicious found, so we just keep a close eye on me. I hope you get evaluated quickly - I know the experience is unsettling to say the least. Hugs
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Thanks, Rah. 40 days is a long time! Then you’ve had nothing since? Strange thing was my estrogen was just tested and in menopause has been for 3 years. Guess we will see what docs say.
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Bird-of-light no big events after that one thank goodness. I was in peri-menopause at that point. Hope all goes well for you and glad you are following up with your doctors.
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I called and the OB can see me May 15. I’m a new patient as my former OncoOB only see patients with vaginal cancers. If things don’t slow down, which they haven’t, I was advised to go to emergency. Thank you.
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I'm so sorry you can't get in till the 15th and I'm hoping things slow down! Keep hanging in there. Hugs.
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Thank you, wheatfields. Still bleeding so I figure if I am still bleeding tomorrow, I’ll call and nag.
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Don't feel bad about "nagging" - you are doing the right thing. I'd hate to see you have to go to emergency while the pandemic is going on. I'm hoping it's better today! Or phasing out like a real period!
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has anyone had dizziness on tamoxifen? Been on it about 7 weeks. Last week started experiencing persistent dizziness, sometimes worse than others. Gets much worse if I sit with my head down (looking at a desk or table). Sometimes nausea accompanies it during the bad waves.
Given my bad luck with health, I am of course worried now I have a brain tumor.
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Yes me too have dizzyness nausea. Drinking lot of water and just lying down helps me. I am taxing Tamoxifen for past 1 year with Lupron for ovarian suppression.
All this mess are due to hormone imbalance.
What is your age when you are diagnosed?.Iam 38 and my hormones are in full swing, when stopped abruptly all mess happens.
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Yes my dizziness comes and goes. I also agree with Prahan, make sure you are drinking enough water. When I am not sufficiently hydrated I can be more prone to dizziness and nausea. I have been on Tamoxifen almost two years now and these symptoms can come and go for me.
Consider adding a daily lower sugar gatorade or pedialyte to your fluid intake as well. As with all things, though, talk to your doctor if it persists even with keeping yourself well hydrated.
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thank you Prahan and Rah2464. That helps me not freak out. I will focus on hydration.
Praha I am 38 also. Turning off the estrogen seems like it could really confuse the body.
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Tamoxifen is shown to be VERY dehydrating. Drink lots of water. And when I say lots, drink lots and then lots more. I struggled with nausea and dizziness for a year before I finally found that water was the key. Didn't get rid of it totally but definitely got me to about a 90% improvement!
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Scoop! Wow! i was just about to post
a question about vertigo and tamoxifin-
i have been side effect free fir clise
to a year ( 20 mg a nite right outta
the gate-)- then got up 4 days ago
and the room was spinning around-
had to lie back down and felt like
I’d be on the Whirling Teacups at
the fairground- been a bit nauseous
ever since- maybe ear virus ?covid?-
menieres disease?- of course
everything runs the gamut in your mind
of possibilities- but the only thing
that made no sense was zero symptoms
of flu etc like headache etc-otherwise-
So lastnite i researched on
Dr, Google and saw that vertigo
is a common symptom- so i am
doung a wait and see for now-
i see my OT in June so may ask
him about this( unless it happens again)0 -
cassiecanada oof! That is no fun. I described it to a doctor friend as everything just feels kind of wobbly constantly. It's almost like I'm drunk? I've severely increased my water intake (per lala1 and others). The last two days I drank 135-150 ounces a day. Unfortunately I'm still having symptoms. Yesterday riding in the car I got so nauseous I almost had to ask my fiance to pull over. I'm hoping if I stay consistent with the water I will start to see some relief, because this is miserable.
I told my MO about it and she had me in for blood work. All normal. Her first solution is to try zofran for nausea, but the nausea is a result of the dizziness so really I just want to resolve that.
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Wheatfields: update. Stopped bleeding and will see a new OB on the 15th. My guess is if I am not in menopause as we thought, the recommendation will be to remove my remainng ovary.
Prahan, I have not expereinced those side effect. I did get bad cramps in my legs at night and take 1/2 now, which helps.
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Scoop - it may not be enough to drink only plain water. You may need pedialyte or gatorade to give you electrolytes as well. So maybe try changing out a glass or two of water with electrolytes. Hope that gives you some relief. Also for the nausea - when it really bothered me (and still occasionally does) ginger tea, ginger gum really helped. Hope you get answers soon.
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I've been taking tamoxifen for 3 months now, one of my side effects have been really unusual (from what I read on here).My plantar fasciitis, that I've had pretty severely for the last 3 years, completely went away within a week of taking tamoxifen! I can finally walk bare foot! I am extremely tired all day and sleep like the dead at night, I feel like I can never get enough sleep. Other than that I'm having mild hot flashes, dry skin and I just recently started getting charlie horses in my left foot. I also seem to have weakened tendons or muscles in my joints, I have injured myself twice since taking tamoxifen. My gluteus minimus muscle has a tear (discovered on an MRI for the terrible hip pain I was having) I have no idea how I did it. And I did something to my knee while doing a few squats. I feel like I am falling apart, my endurance for exercise has plummeted. I am immediately out of breath when I try to exercise, I exercised throughout my radiation and didn't have this problem. They also discovered on my MRI that I have a hemorrhagic cyst on my ovary, not huge but a significant size and causing pain and pressure, my GYN is following me for this, but I've never had an issue with ovarian cysts that hurt or cause problems. I've read mixed things about tamoxifen causing cysts. My MO scheduled me for a follow up 6 weeks after I started taking it, but that got rescheduled to the summer so I haven't been able to pick her brain.
overall I'm doing well on tamoxifen, it's an adjustment though.
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I think today is the first day I seriously wondered if it was time to toss in the towel. To quit tamoxifen.
I have been really down, but worse, in a deep self hatred over my weight gain. All in the middle. None of my pants fit me anymore or stay on. Because I have no waist. It's like putting a dress on a pig. I hate how I look but even more I hate how I feel. My bones hurt, my joints ache, my gut is bloated. Things that used to be easy are very hard. One of the first side effects I had was that suddenly sleeping, moving in bed, was hard and it hurt and I remember waking up after another bad sleep and wondering, when did sleep become painful? But it was. That faded. But now, oh my god, it has been gathering momentum, the pain and creakiness, the joints that lock in place, the arthritis that sprang up out of nowhere in my hands. I'm just a fat, slow, clumsy pail of guts. And I hate myself. I am a ponderous, aching cow.
Today I finished a two day job of sitting on the floor and hacking the dog's hair off with scissors. He is a doodle and weighs almost 90 pounds. He was in desperate need of a groomer but none are taking clients right now. It could wait no longer. His smell was atrocious and he was becoming an outcast. Try and get your dog to social distance. Good luck with that! It took about 10 hours to hand hack his hair off. And when I got up off the floor...because I sat on the floor to do this, let's just say my spine did not get the memo to stand up straight. I hobbled around like Quasi Motto and still am suffering pain. I took an ibuprofen an aspirin in hopes that I don't die of pain in bed tonight. Pain. There is way too much pain in my life! This was NOT my life before swallowing my first tamoxifen August of 2017.I looked at Hub tonight and gave utterance to something that has been on the back burner in my head for a long time. But I've had it with the fat and had it with the hurt. I said to him, "I wonder if I should go off tamoxifen and take my chances with cancer." He said, "I'll let the dog in if you think that's the answer." He's deaf. He hears maybe 10% of what I say. Everything else he's just guessing. I just nodded because fat, aching me did not have the energy to shout at him again. This is fucked.
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Oh runor, I have no words. You are stronger than I am, I bailed after three weeks.I won't be someone who tells you what to do (that's so rude amirite?) but I will say you are a smart, wise woman. If it's time to stop, it's time to stop. If you believe in your heart of heart you need the potential mitigation this drug offers, then I send you strength and love.
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Runor my heart hurts for the impact this drug is having on you. You capture so elegantly the difficulties in taking this medicine. I will echo what edj3 says - you are a wise, thoughtful woman and I know you will make the best decision for you because that is what this is all about, living for you. What terrible choices to have to make, no road is easy. Sending you love and hugs.
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Runor, share the weight gain issues. I recently took a month off Tamoxifen, due mostly to increasing brain fog and lassitude. Those did improve but no weight loss and no change in joint pain, not really surprising as I had arthritis before starting T. I am back on and doing OK but anticipate it happening again and will be sharing your shoes about whether to continue or not. It's a tough decision, one which I was seriously considering until my doc suggested I try a month off.
Supporting you in making the decision that is best for you.
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Thank you, ladies.
I play potential outcomes over and over in my head: Quit tamoxifen, feel better, get cancer again, die. Stay on tamoxifen, feel like shit, get cancer again in year 7, die. Take tamox for 5 years, never get cancer again and think, why the hell didn't I quit that damn drug while I was young enough to enjoy life and spend that time not hurting and being a fat blob? Or, quit tamox, die of covid? Like....I'm just feeling bleak. And fat. And stiff. Blah.
Thanks for letting me whine. I don't know how comfortable I am going off the drug, despite how much I hate what it's doing. But I might dial it way back. I already only take 10 mg most days. Have since the start. I suspect that I am one of those people who is PROFOUNDLY affected by tamox and think I would have to quit it entirely, for an extended time, to see any improvements. Like Beaverntx, I also do not lose weight in a month. My weight seems to be really attached to me and doesn't want to leave.0 -
If you have any post menopausal bleeding or even spotting, you need to be worked in. Last week I had bleeding, co days barely noticeable spotting, then again all with the pms discomfort I used to have. I've been postmenopausal for 5.5 years.
It can be from a few things, fibroids that I have, cancer, tamoxifen.... point is you don't wait to be seen even if symptoms stop like it mostly did mon and tues. Receptionist had me may 26 due to covid staggering appts. Called again and another gal said no, come in tomorrow. So on Thurs I had pap, cervical polyp removed and endometrial biopsy done. First was the transvaginal pelvic ultrasound which with my fibroids, not much could be seen. GL. I find out my results this week.
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Hi,
I have not been on this site since trying to make decisions regarding my breast cancer treatment in January 2018. I had estrogen positive, HER2 positive, progesterone negative Invasive lobular carcinoma in my R breast for which I had a lumpectomy, followed by chemotherapy, radiation and tamoxifen. I started the tamoxifen June 2018. Overall I had done pretty well on it with hot flashes being my biggest deal. I gained about 15# overall. In the past few months I have had back pain/ spasms when getting up out of bed and sometimes just with position changes. It feels worse in bed than when I'm up during the day. They did a PET scan to rule out cancer which thankfully did. More recently I am having pain, more at night than during the day in all my body joints. Ibuprofen helps quite a bit but I know that is hard on the body if taken too often. Now just tonight when simply washing dishes, I suddenly got sharp pains in my left hand middle and pointer finger joints and they suddenly feel very stiff and hurt like crazy when I straighten all the way. I looked up Tamoxifen here in this chat and it seems that joint pain is pretty common with this drug.
I'm 2 years into the recommended 5. I guess I'm wondering if once a person is off this (hopefully I can stay on through the recommended course) but does this pain go away too or is the medicine causing irreversible joint damage/arthritis?
I'm so sorry for you having such trouble with how you are feeling, the weight gain, stiffness, pain. Makes me wonder what is in store the longer I am on this. They are considering changing me to an aromatase inhibitor ( I am 58 - was premenopausal when diagnosed but had no periods since chemo and tamoxifen was started) after the 2 year time frame on tamoxifen (end of June 2020. What I read on this site though is that has a greater percentage of women with joint problems.
I also am struggling with low neutrophils and total white blood cell count even this far out. It was up last fall in normal range. I'm off work now for 1 1/2 months (I work in a hospital as an O.T.) due to COVID 19 and risk of exposure while being immune compromised.
So I'm exercising, stretching, working on abdominal exercises and walking to try to improve all areas of concern. A week ago I started the Whole30 diet which I did for a month just a few months prior to cancer diagnosis. It is supposed to help reduce systemic inflammation and therefore help with immunity. I'm very curious if my joint pain will improve. I'll let you know. Who knew there would be these post chemo/surgery/radiation ongoing issues!?
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runor I’m going to leave this right here.
I felt just like this. I was over weight, on the verge of buying new clothes, felt fat and useless.Was it tamoxifen..? Prolly.
Was it me...?... most definitely
Could I make the change I needed to make? Yes.
It was tough, a long road 18 months so far but one day I decided I was ready, and it was time for me.
Not my husband, my kids, my dogs or anyone else. Time for me.
I started out really slow. 30-35 mins a day exercise, watched every thing I ate and recorded what I ate.
When diagnosed with cancer in2015 I was 140lb give or take. In 2018 I hit 163 lbs. today I float around 138-140lbs. I take .5 tam every second day. my hair stopped falling out Mar 21.
Sometimes we have to concentrate on us. Once I started to focus on my health and well being I was able to adjust my days so that after putting me first I had time for everyone/everything else.
It’s not easy, it will take time. YOU Are worth the time and the effort. YOU really are. Trust me on this.0 -
Mollie, I am giving you a hug of gratitude. It is very hard to be motivated when looking at this ...hot mess, literally, a hotflashing, hair falling, beard growing, leg cramping fat mess. Motivation to care is in short supply. But I know you are right. I know you are.
I should recall from past posts (but do not, sorry, tamox memory trouble) tell me more about this .5 mg daily dose. Did I read that correctly? You must get 10 mg tablets and cut them in half. I cannot imagine trying to cut a 20mg tablet into 4 pieces. Mine would shatter into powder. Are you on this dose level as a permanent thing? Or is this just a short term dosage while you get your hair to grow and get your bikini body in shape? Are you doing this with docs blessing or did you go rogue? My 10 mg most days and 20 mg Sunday and Wednesday are NOT with my doc's blessings. I did not ask his permission, I told him what I was doing and why. I would like to know more about this.0 -
Runor, did you have the oncotype test run on your tumor specimen? Based on the score, you can determine what percent benefit the drug is offering you in terms of risk reduction, which might help you decide whether you wish to continue or not.
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I thought the oncotype score helps figure out if chemo would be of use, not antihormonals.
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