Bottle o Tamoxifen
Comments
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Stage IIb IDC here and I was 95% positive on ER and PR. I'm on 20 mg daily. 40 mg seems high and not the norm so I'd be asking for a rationale from the MO. It is probably still ok but I'd still want to know the reason for the higher dose
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Sloan, I too am on 20 mg a day. 40 mg does seem like a lot.
I have been on it for just over a month. My SE have been minimal. I have had some muscle/joint pain. Not sure if this is self inflicted due to weight training again at the gym. It seems like I don't recover as quickly after my workouts as I used to. It could be a combination of post chemo recovery as well. Who knows, as my body seems totally foreign to me. With all the crap it has been put through the last 8 months, I don't know what normal is anymore
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Hi Sloan - I just checked my dose (I am starting Jan.1) and I am also 20 mg. I would also question dosage. I go back in one month but they didn't say anything about increasing the amount.
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Just a comment about the 40mg dose: When I was experiencing severe SEs from Tamoxifen I read a ton of studies regarding the subject. In quite a few I found reference to the fact that those experiencing the most significant and severe SEs were those on higher than normal dosages. Personally, I would get a second opinion from a MO not in the same office network before taking anything higher than 20mg a day. Most studies showing the wonderful efficacy of Tamoxifen were done on women taking 20mg a day.
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Sloan I'm on 20mg per day as well (in New Zealand). I've never heard of anyone taking 40mg per day?
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Thanks ladies for answering me so quickly about the headaches.
I don't drink so I know it's not that but Since everything else n my body
hurts also I will chalk it up to tamoxifen SE. I tried to get some more
norco from my MO but he refused. Guess I have to suffer til I can
get to my FP to see what she can do for me. I am 2 yrs out from
DX and still don't feel normal but glad to be cancer free!!! It's a long
journey for us all but I know we will all get thru it!!0 -
Sloan, Thanks for the update, you learn something new here everyday. I'm going to ask my MO about it when I go. I had my ovaries removed so for me it probably wouldn't be warranted but I'm going to ask. MJS
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Sloan, IDC stage 3 here with a highly hormone receptive cancer and I was put on Tamoxifen 20mg daily. Started off with 10mg for two weeks and increased it to full dose after 2 weeks. All of the women I have talked to were on 20mg. I would get a second opinion as 40mg seems high for stage I.
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Sloan - I did have some neuropathy in my hands over 2 years ago before being diagnosed with gluten sensitive enteropathy but no problems since being on the proper diet. I also tend to get white fingers when I get chilled, but it usually resolves with just a bit of rubbing to warm them up. I never had such a loss of feeling and half a finger going completely blue! Perhaps my getting chilled more than normal that day could have been due to a flu shot I had 2 days prior?
Update on my situation - I emailed my MO with the ultrasound results (7.0 mm endometrial lining after 2.5 weeks on tamoxifen) and the ischemic attack in my finger. He said to stop the tamoxifen for now and give him another update after 2 weeks.
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Hey Sloan, I'm on 20mg since Nov 1. seems the only side effect for me is hot flashes -- but you know me, I didn't have too bad to chemo neither (in comparison). Though My MO was expecting my period coming back couple months after Chemo, but it hasn't happened; maybe it won't now that I'm on Tamox.
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Sloan, I wanted to add that I am stage 3 here with a highly hormone receptive cancer 95%. I was put on Tamoxifen 20mg daily Per my previous post. I have an email into my MO to ask about daily above 20mg. I will post once I get a response. BtW, I probably could not tolerate anything higher than 20mg as this dosage kicked my butt with the SEs.
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Hello ladies I have been on tamoxifen since June of this year (I can still say that lol) on 20 g and that's more than enough. Side effects for me have been minimal so far. Night sweats and nausea in the morning as I take it at night. Knock on wood so far so good. I'm stage four with two bone mets so pretty important that I make this work.
Happy New year to all you ladies mostly I'm a lurker love your posts. I did have one question a while ago someone posted about having tail bone pain. Finding I'm falling into that category of late is it the tamoxifen or something else to worry about...
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keepwalking - Thanks hour the update; keep us posted. That is so frightening that you had such severe SE so early. I just keep thinking of your poor little finger! I'm glad they told you too go of the meds. With the thickening of the uterus, are they wondering if it's endometriosis?
Thank you, all if you, for your posts on 20mg Tam. Like I said, I called the NP and the pharmacist, but my MO is on vacation. His nurse said that's what he gives, but she will ask him to call me next Tues when he gets back.
I've been taking the 40mg/day for 4 days now. So far I just get a little headache for 10 min (like I used to get before my period), and it's just a little noticeable if I take it on an empty stomach. I'm just glad it doesn't make me hungry. I told my doc I craved food when I was having periods, and I know estrogen makes you hungry, so I'm wondering if he's really trying to keep the estrogen way down. Like I said before, I'm a few pounds overweight, and I know Tam works better if you are at a BMI between 19-25. I never really dieted, but I'm going to try to drop a few pounds (along with 20 million people who make that resolution! Haha). I'm new to menopause, and I heard it's a little harder to lose weight in menopause. Anyone have success? I walk 4 miles a day and eat pretty healthy, but lately I have been eating like dessert is a necessary food group! My company is gone now, so I won't be making those desserts. I'm struggling around 7pm... I'm drinking tons of water, I meet my fitbit 10,000 steps, and I was thinking maybe only having fruit after dinner if I can't control my cravings. Anyone want to share a tip that doesn't include supplements?
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Sloan-if you are going to eat in the evening make sure it is high protein. It will keep your blood sugar from dipping and may help with the naseau you feel in the morning. I like a good old rice cake with peanut butter. I take my Tamoxifen at supper time and haven't had any issues with stomach problems. The night sweats are another story
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Keepwalking---I also had the thickened lining but not till about a year into it. I'd gone for my annual and asked my gyn to do a baseline TVUS which she really didn't think I needed (yet another example of advocating for yourself). Turned out my lining was at 15mm and I had an ovarian cysts with some fibroids. I ended up getting a new gyn who was much more educated about Tamoxifen and BC and SEs and he advocated a watchful waiting program of TVUS every 3 months. My lining stayed pretty steady for about 9 months then started to thicken more so we jumped on the total hysterectomy wagon, ovaries and all. I'm 52 and wasn't in menopause but figured it wasn't far away. I'm now a year out and feel great. No more pain, bloating, etc and most of all no worrying about what Tamoxifen is doing to my reproductive parts. I really balked at do it but now feel like it was a great decision. Anyway, most important thing is to make sure they keep a good eye on the lining. My gyn said if I stayed around 12-15mm he'd have been ok. He also said it grows and shrinks with your cycle so you have to do an US often over the course of a couple of months to see if there really is a problem.
Sloan--As to weight gain on Tamoxifen....my MO told me before I ever even started it that most of his patients gain 40 lbs in the first year!! I've been on it for 3 years and gained 6 so he's pretty happy. I, on the other hand, hate it mostly because I watch what I eat and work out every day. Recently I had a nutritionist tell me that I needed to stop working so hard at it. I limit myself to 1200 cal a day and work out for an hour most every day. She said I should be closer to 1500 cal and take a day or two off a week. I'm just starting that program so we'll see how it goes, but the point I want to make is that maybe it would help to meet with a nutritionist for advice. And remember to cut yourself some slack. BC is a bitch to get past and a dessert (in moderation) isn't going to kill us. We need to remember to care for ourselves. And yes, menopause sucks and makes weight loss even harder but that's ok,,,, we've already shown BC how hard we can work!
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Sloan, I have actually lost almost 30 lbs since starting Tamoxifen in August. I go to Jenny Craig and I am working out 5 to 6 times a week cardio and just started weight training. I was at the gym today and it seems a lot of people started their new year's resolution early. My weight loss is slowing down as expected but I'm going to keep at it. One thing that helps me is to have a flavored coffee when I crave something sweet, I also don't keep sweets in the house because I have very little willpower, easy for me as I live alone. Good Luck, MJS
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Sloan, I've been lurking on here for a while but I wanted to tell you what works for me. I try to avoid sugary foods as long into the day as possible (or all day if I'm lucky). As soon as I eat something sugary I am hungry for the rest of the day. I don't like to deprive myself, so I buy packages of the dark chocolate squares and allow myself 1 of these each evening (if it's a bad day I have 2). If I'm feeling actually hungry (not just craving sweets) I will eat something like a slice of cheese or a spoonful of peanut butter - things with protein. Protein really helps satisfy.
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keep walking what you describe sounds like raynauds...my mom has it. Could totally be unrelated to tamoxifen.
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lala1- thanks for your response! Sorry about your neurapathy. I had a little when on the Taxol. I hope that goes away for you soon.
I have ovarian cysts that may need to come out and the ovaries with them so we will see what my MO recommends if that happens. I guess I would stay on Tamox since I am tolerating ok.
Healthy New Year!
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superius- not sure of your age but I was 47 when diagnosed last Jan and my MO said that I wouldn'tbounce back after chemo unless I had "ovaries of steel" and she was right. Had my hormone levels checked last month and I am definitely in menopause ( I definitely wasn't before chemo!)
So far the hot and cold flashes and night sweats are tolerable. Can't lose weight though! I gained like 20 lbs during the 6 mos of chemo and can't get it off. I really need to focus on diet and exercise and hope that the Tamox isn't making it even more difficult!
Healthy New Year to us all!
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wow solfeo! Bravo on your weight loss! That is amazing!
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Officially joining the club as of this morning.
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Welcome, Allison.
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Thanks, Susan!
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And I join the club as well....starting tonight. My MO suggested I take it before going to bed. Here's to hoping no side effects for all! Happy New Year!
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CarolynAnne : I'm 42. My last chemo was on the day when I was 42 1/2. last period was about 2 weeks after first chemo. At that time, my MO was on vacation, so I saw another dr in Aug, he said it probably wont come back, but when I saw my MO end of Sept, she said maybe couple months. So not quite sure what to expect or how to prepare if it does come back...
Hello Suzanne, looks like bunch of us from Aug chemo are here!
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Hi superius! August chemo group is moving right along! I am 50 - my MO said chemo probably kicked me into menopause. She said if I was under 45 my period might come back. My last period was 2 weeks before chemo started in August so at this rate I will be officially in menopause in July. Which means 2 years of Tamoxifen and then onto the other one - which I can't remember name of but for post menaupausal women.
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I am 52 and my MO said my period would probably come back. I think she is crazy.
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I'm 45 and had my last period a week after my first chemo. So early Sept. A few weeks after my final chemo I felt like my ovaries were trying to come to life. I was crampy and it felt like things were brewing. Since I have started Tamoxifen all of that has quieted down, back to dead ovaries. Who knows if it will come back. My mom was 45 when she went through menopause. So I'm guessing the chemo will have pushed me into menopause land. I sure as hell hope so because I NEVER want to experience all of this hot flash crap again. Once has been enough. They are my biggest struggle so far. Accupunture has helped to reduce them.
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My MO said that I had a 50-50 chance of my period returning, I was 48 when I finished chemo. I am one year PFC now, and I haven't gotten it back. Somewhere I read that if it doesn't come back within a year it isn't ever coming back. Franky, I don't miss it at all.
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