Bottle 'o Tamoxifen

Sloan15

Okay, just called the pharmacist. He said women can take up to 80 mg twice a day -OMG-- and docs try to give you as much as you can tolerate. The pharmacist said maybe my doc is starting me high sho anything lower seems better. Some docs, he said, start people on 10 or 20 and go up later on. Bottom line: the pharmacist said this is not an overdose or wrong in any way. BUT, I'm still going to ask my doc ro show me the study when i see him.

ladyb1234

Sloan, now I am going to ask my MO what is the standard, why the variation and is there a difference in the effectiveness of a larger dosage. 80mg - twice a day WOW!

The decision as we know is always with you and your MO on the aporia te dosage.

This is why I love bco we find out and learn so so much. That was great info Sloan! Are there others that have been prescribed more than 20mg a day? If so, what was the reasoning from your MO? I have added this question to my list for my MO

keepwalking

Hi Ladies,

I was hoping I wouldn't have to post here but here goes:

I started tamoxifen 2 1/2 weeks ago. The first 1 1/2 weeks were an absolute breeze - I kept saying to my husband that I was like a pre-pubescent girl (!) and that I figured I would just sail through this medication. Well, I then moved to pubescent, LOL. I started having lower abdominal (pelvic) pressure and mild to moderate pain that was constant. Also, the pain was more when there was anything in my bladder so I was constantly going. After many days of that I finally went to my family doctor and he sent me for a vaginal ultrasound, which I had yesterday. The only abnormality it showed was a 7.0 mm endometrial thickness, which he said is "greater than expected for a woman your age" and probably a result of the tamoxifen (after 2 weeks?). So now I have an appointment with a gynecologist in about 3 weeks.

But that's not all.... Yesterday morning I was a bit chilled and all of a sudden my right index finger lost all feeling and turned completely blue up to the second joint! Rubbing and massaging did not help. I quickly walked to my local clinic. By the time I arrived the heat I generated on the walk had helped get the circulation going again, but it had been blue/numb for at least 30 minutes. I saw a hand surgeon who just told me the obvious - a temporary ischemic event in the finger - and prescribed keeping my hands warm, wearing gloves, and soaking in very warm salt water 2X/day and in the event of it happening again. He wouldn't say if it could have been a blood clot and told me to discuss it with my oncologist. It happened again last night when I got chilled again, but the warm water resolved it in a few minutes. Has anyone else had something like this happen?

I emailed my MO last night with all the details and got a message back early this a.m. "stop the tamoxifen for now". It is still only 7:30 am, so hopefully I will get a call from him later in the day with more details. Darn. I don't want worrisome SE's but neither do I want to be without the protection.

keepwalking

Sloan - Hoping you find a satisfying answer on the dosage (I also take 20 mg per day). It is not a comforting feeling to be second guessing your doctor, so I think it is perfectly reasonable to get an explanation for the factors involved in his decision.

Ridley

Sloan -- you can always start with 20 mg per day for a period of time and then increase it to 40 mg once you see how the side effects are going. I'm only on 20 mg per day and like the others based on my reading have only seen that dose or less if a person is not tolerating 20 mg per day. I did some research at one point on splitting my 20 mg does into 10 mg twice a day and found taking it either way was fine.

Let us know what your onc says.

Sloan15

keepwalking - Wow, in your finger! Let us know what your MO says. Did you have any neuropathy (in the past) before your finger turned blue? I'm on such a high dose that this makes me worry! I read that 20 mg is for DCIS; I have IDC. I'm still going to ask!

rleepac

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

DeeRatz

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

Suzanne50

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.

SummerAngel

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.

fizzdon52

Sloan I'm on 20mg per day as well (in New Zealand). I've never heard of anyone taking 40mg per day?

Ramey

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!!

MJS1266

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

Lolis197138

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.

keepwalking

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.

superius

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.

ladyb1234

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.

Wendy3

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...

Sloan15

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?

DeeRatz

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

lala1

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!

MJS1266

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

solfeo

I have lost 65 lbs on a modified ketogenic diet since my diagnosis 5 months ago. Things have slowed down since I injured myself and had to stop exercising, but I have continued to lose even through the holidays. 16 lbs total since I started the tamoxifen November 17th.

ORgal

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.

Tresjoli2

keep walking what you describe sounds like raynauds...my mom has it. Could totally be unrelated to tamoxifen.

CarolynAnne

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!

CarolynAnne

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!

CarolynAnne

wow solfeo! Bravo on your weight loss! That is amazing!

Trvler

Officially joining the club as of this morning.

ksusan

Welcome, Allison.