Bottle o Tamoxifen
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Scottiemom11 Wow. That's a lot. Did you get advice about what to take? I feel like I'm on my own!
lala1 After I initially felt the rib pain, it went away. Then it kicked back up after doing some yard work. It's hurt for about a week. Considering the season, I will be continuing with the outdoor work. I wonder what's actually happening...stretching of muscles that hold the rib in place?
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Notdoneliving---For me, I have one of the Alloderm slings and it almost feels like it pull/stings where maybe it's attached to my rib cage. Or at least that's what I've decided since my docs usually just shrug and tell me to be more careful with my workouts.
Also, you asked about supplements.....I actually take quite a few, all of which are for specific things. Tamoxifen is my only prescription. Other than that I take:
fish oil, baby aspirin and multivitamin which were all suggested by my MO for general health and reduce chance of blood clots from Tamoxifen
Vitamin D 5000IU per my BS request because he said higher levels are shown to reduce risk of recurrence.
Magnesium chloride (SloMag) for regularity.
Magnesium Glycinate for joint/muscle pain as well as hot flashes.
Peridin-C and iCool for hot flashes.
Olive leaf extract to keep these pesky winter colds at bay.
Turmeric and ginger for joint pain from Tamoxifen (which work amazingly!).
Probiotic cause Tamoxifen messes with my digestion.
Ground Flaxseed--1 spoonful a day
All of these are with my docs blessings. This regimen keeps my Tamoxifen SEs at bay and lets me try to live a "normal" life.
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Checking in here after Easter festivities. Hope everyone had a good day. It was beautiful here in San Diego.
As far as Tamoxifen vs AI, my oncologist said the benefit is practically the same (one or two points isn't big), but that AI is preferred because the side effects are less serious I guess. The risk of bone loss and higher cholesterol is more manageable compared to blood clots and uterine cancer (God forbid). Having said that, someone with osteoporosis on a baseline scan would do better with Tamoxifen for a couple years until a new scan shows improvement. And Speaking of cholesterol, I dropped 50 points off my LDL without medication in one year! No dairy is the biggest change I made and I plan to keep it going.
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thanks lala1. I bought some flaxseed but it smells like oil paint. Couldn't bring myself to eat it. 😟
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Notdoneliving---maybe it was rancid? I heard when it goes bad it smells terrible. I buy a bag of flaxseeds from the store and grind a small container's worth that will last me about 2-3 weeks. I keep it in the freezer so it won't go bad.
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Lala-
I am in the same boat as you regarding AI vs. tamox. If have been on Tamoxifen since June 2013- will be 3 years this June. I do feel there is a low level of toxicity with tamox. My main side effect with tamox is that it messes with my digestion (slows me down) and dries me out and that consequently gives me some skin issues. It also makes it very difficult to lose weight though I'm sure some of that is menopause as well which I think I'm just fully entering. I get some joint/muscle aches but is manageable. I am worried that an AI would have worse side effects though I believe it is probably more effective. I am 50 and believe I am post-menopausal at this point. I meet with my MO on Wednesday and will hear what she says this time.
I take fish oil, magnesium, sometimes biotin, sometimes D (but constipates so usually don't), digestive enzymes,
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Just read through the last few weeks of posts, and like anything bc related, it sounds like the experiences with Tamoxifen are all over the board. I've been on it for almost a year, am post menopausal, and the only side effect I have is hot flashes. Like during menopause, I find that if I exercise, they are not nearly as bad. I had to stop exercising for 5 months when I had my TE in place, and the hot flashes were much worse. Now that I can exercise again, they are manageable.
Question: One of the SE listed is cataracts. I asked my eye doctor about it and she looked it up and found that women on Tamoxifen should have their eyes checked for cataracts every 6 months. She had never heard of that before and she has other patients on T. Has anyone else heard of this?
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momwriter---I'd love to know what your MO says about switching you. My BS says the side effects of an AI would be worse than the slight benefit and my MO just kinds shrugs and says he'll do whatever I want. I don't see him again til Sept so I have some time to decide. I did meet a lady today in yoga that went thru all the BC/chemo stuff last year and is now on Arimidex. She said her MO picked that one because it's a little gentler to her heart (she has slightly high BP and cholesterol) and he said the AIs can cause some harm to your heart. She's also got osteopenia but he just added calcium supplements. But her biggest problem is trigger finger which AIs can cause. She said she really struggles with the joint and bone pain, especially in her back, but her hands hurt all the time. She sees the same MO as me and he told her acupuncture for the back pain (which she said is helping) but that he really can't help with the trigger finger. As my husband would say "Why swap a black dog for a monkey?" Whatever that means! But he's right...I just have to decide if the increased SEs are worth the decreased recurrence rate. So let me know what advice your MO gives you. I'd love to hear the pros and cons of each.
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bikefam---My MO and my BS both warned me about cataracts on Tamoxifen. I get an annual eye exam and then every other year I get some test that looks way inside my eyes. I can't remember what it's called. My ophthalmologist said this would catch any issues early enough. Both docs said that the biggest issues to watch for were cataracts, blood clots and endometrial cancer. I get regular eye exams, take a baby aspirin twice a week for the clots (because once a week caused too much bruising), and after regular transvaginal ultrasounds showed a thickened endometrial lining I got a total hysterectomy with ovary removal. So all in all, I feel I'm being pretty proactive. I feel really good these days and am staying very active.
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My ophthalmologist said once a year, based on the state of my eyes.
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All of my docs have said one year, too, for eye exams.
Should I ask about the aspirin thing? I take fish oil (for joints) and vitamin E (for hot flashes); those are both blood thinners, but I'm not opposed to aspirin.
Has anyone had weird pinprick-like skin sensations on tamoxifen? Almost like something is biting the skin, but then nothing is there?
In other news, I feel like I'm about to get my period, physically and emotionally. Haven't had a period since August. Wheeee.
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Interesting to read what everyone is taking. My MO specifically asked me to take fish oil (one that has at least 900mg of DHA/EHA), a multivitamin and a daily aspirin (which, as I mentioned, I take twice a week instead of daily because of bruising. He was ok with this and said it works just as well). He specifically asked that I not supplement with Vitamin E saying it had estrogen properties to it, even going so far as to ask that I find a multivitamin with minimum Vit E. I think he's a great MO and he loves to research stuff but sometimes I think he's over cautious. I'd love to take extra Vitamin E if it would help my hot flashes.
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I swear there's an oncologist's version of the magic 8-ball.
Onc: "should this patient take vitamin E?"
8-ball: "the results are unclear."
I crack myself up.
In the meantime, lala, this is what I take daily. My medical team knows about all of it (and even endorses some of it!): vitamin D 5000 IU, vitamin E 800 IU, B-complex, (extra) biotin 5000mcg, (extra) B6 50mg, fish oil, CoQ10 100mg, turkey tail mushroom 1000mg, garlic. I often have smoothies with turmeric, raw cacao, green tea extract, cinnamon, and chia seed, too.
I didn't take anything but the B's during chemo and rads; we were much more cautious about antioxidants.
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Kate: I like your tagline "Scars are tattoos with better stories". I'll have to remember that.
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Kate - Pinprick sensations - yes! But, come to think of it, I haven't had them for a while. I started Tamoxifen 2 weeks before radiation and had these "ouches" all over, like the bite of a mosquito or deer fly, that were driving me crazy. I am not sure when they went away, but the only thing I can think of is that maybe it had to do with starting supplements again after radiation? I take a good multivitamin/mineral with loads of B's (Solgar VM-75), Fish Oil (700 mg), Vitamin D (I don't measure - but a large squirt each day), and occasionally Magnesium Citrate (used to be every day but my family doctor didn't like that).
On the aspirin question - when my MO was explaining the measures I should take to avoid blood clots (not sitting for long periods without walking around, not wearing knee socks and the like, not crossing legs - very hard!), I asked about taking baby aspirin regularly. He said absolutely not. His philosophy is not to take any medication unless needed to alleviate symptoms because of the strain on the liver.
Which brings up another issue - at my recent blood test after 3 months of tamoxifen I had elevated bilirubin and elevated liver enzymes, which I have never had in my life! Only slightly above normal range, but still disconcerting. Has anyone else seen this with tamoxifen? (I don't see the MO for another 3 weeks so don't know his take on it yet.)
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I'm so relieved to know that the pinprick thing has happened to someone else. I thought I was losing my mind, and then I went to all-out darkplace (mets). . . . The things they don't tell us.
Keepwalking, I wouldn't worry too much about the liver enzymes unless they stay elevated or keep going up. My MO and I have talked about liver enzymes at length in the past; her take on it is that they fluctuate throughout the day, and the liver is going to have to work harder some days than others on top of that. Tamoxifen is metabolized by the liver, so it doesn't surprise me that your enzymes are up a bit. Slightly above normal might be your new normal. Keep us posted!
In other news, I've been doing mostly-okay on the Teva brand tamoxifen (other than the pinpricks and raging, out of control night sweats), and now my pharmacy only has Watson available. I love being a science experiment!
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My eye doctor said to just stick with my usually annual exams and that if the issues were drug side effects, you should expect them in both eyes.
I hope all who switch to AIs have a better experience than I did. I literally had to have rings cut off my fingers my joints were so swollen. I could barely get out of bed because the joints in my feet were so messed up. And, I couldn't wear my usual shoes because my toe-joints were so swollen. It was not at all what I had hoped for. But I have read enough to know that people vary widely in their responses to things. I am also finding that it is more a matter of which side effects a person can live with rather than not having any side effects. I came back to tamoxifen and am probably still having the same cognitive issues I had the first time. But not being able to walk was really too much for me. So, barely remembering anything is my new normal. And I am hanging in there.
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It is interesting how MO's decide. If I voice a strong opinion about anything, my MO tends to say, well then you should do it. So I'm going to be very impartial about the Tamox/AI question. Meanwhile I may seek out a naturopath to deal with the few side effects I don't like about tamoxifen.
Another question: Lala, as a Uni like I am, how often does your "good" side get screened? I have extremely dense breast tissue which even 3D mammos don't work on. And every single time I get a mammo I get a callback on it which causes months of anxiety with the followup testing. I am supposed to have an MRI alternating with mammo every 6 months. But I think I am going to say no to the mammo because it doesn't work with my tissue and I find the stress impacts my quality of life. I just had an MRI- needed a follow up on that and it turned out to be nothing- but that took Oct-January to get resolved. And now it's already March and time for another screening-
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My liver enzymes were up too, MO said it could be Tylenol.....
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Hi everyone,
I was told to take tomoxifin.....but haven't. I already take a medication that can cause liver damage and am super worried about stroke. I have an appt with my oncologist next week and will talk about it with him, but wanted your comments on taking it....pros, cons....side effects....
thanks
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I take a whole host of supplements too. All of my doctors have the list and none of them has ever told me to take or not take any of them, except during radiation.
I take Vit B complex, Vit C, Vit D, Vit E, Fish Oil, Kelp, ginger, turmeric, glucosamine and magnesium. The last 4 I started after Tamoxifen to help with side effects, the others I was taking before BC.
I don't see anyone mention Vitamin C and I think I've heard good/bad with it. Anyone here have any info on Vitamin C and BC?
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Hello All - hoping to jump in here to this Tamoxifen Fun Group - seesome familiar names and have to catch up reading the posts .. I had my 1st Post chemo MO follow up Monday and got the script for Tamoxifen. I was surprised as I have been in "chemopause" since September and scheduled to get my ovaries out in June I thought I would be started on Arimidex but MO preferred Tamoxifen for 2-3 years then 5 Years of Arimidex for me... So I just picked up the meds and curious on best time of day to take it - anyone here have issues taking it at certain time of day or with other meds etc?? Thanks
Mary
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Mary, most of the advice I came across in my vigorous tamoxifen research suggests that taking it at night is best. I take mine right before bed. I get wicked night sweats, but no other SEs (other than the weird skin-prickling thing, but I get weird skin things) so far.
FWIW, my MO has a similar plan for me. I'm 36 and was nowhere near menopause before chemo made my ovaries very sleepy, but I haven't had a period since August. The plan is tamoxifen for six months, and then we start doing things like Lupron injections to keep 'em nice and tired. I'll probably stay on the tamoxifen instead of switching to an AI for five years, and then we'll see.
Good to see you over here, now that we both survived rads!
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momwriter---I get screened annually on my native side with a digital mammogram but every third year he does an MRI. Last year was MRI, this year (last week) mammogram, next year mammogram then year after MRI. My BS schedules these and then has me walk upstairs to his office so I have my results right away. I also have dense breasts although once I quit birth control pills, they aren't quite as dense. I've been reading up on the 3D mammograms and am considering calling him and asking why those haven't been offered to me. He does have me space out my doc appointments with those that give me manual exams i.e. my BS, my MO, my gynecologist so that I see one of these 3 every 4 months. He feels that having a doctor giving me a breast exam every 4 months is an excellent way to catch something early, even more so than the mammogram or MRI. I actually found my lump myself in the shower so I kind of agree with him! I've also heard that ultrasounds can catch alot on dense breasts. Maybe that's an option? I'd actually be pretty happy just having an MRI every year instead of the mammogram as I think they would catch more earlier. Wonder if my insurance would pay for that.....
ORgal---I forgot about Vitamin C. That's another that my MO asked me to stay away from....anything Vitamin C or grapefruit-wise. But he was ok with the standard amount in a multivitamin.
KateB79---Interesting that your taking that extra Vitamin E. Does it help alot with hot flashes? And about the CoQ10, I was just in the Vitamin Shoppe yesterday stocking up on their awesome deal on the GOOD probiotics and the guy working there mentioned CoQ10. What do you take it for? Like what does it help with? Same with the extra Vitamin B...what does it help with?
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KateB79--yes, I have had the weird skin prickly feeling too...mostly felt in the shower. It's almost painful, but luckily fleeting.
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I was sitting in the very nice hot sun on Sunday with my M-I-L wearing black denims. It got really hot so we moved inside. I didn't think any more of it until I noticed I have an itchy rash on the inside of my left thigh and the right knee. It's like burns almost, about 20 round raised bumps ... really quite itchy but not sore or painful. Any thoughts? allergic reaction to something????
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Wow, I can't keep up with the posts on this thread! Chiming in to say the I've been on Tamoxifen for almost a year now. No major side effects for me. Hot flashes started before Tamox due to chemopause. No unusual aches and pains, but I also started yoga a year ago and that definitely helps. My liver enzymes were elevated during my last physical, but were back to normal a month later. I was never a big drinker, but I now limit myself to 3 drinks per week. Tamox cuts your riske of recurrence by 44%, worth a try I think
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molliefish - I get a similar reaction to sitting in the sun with dark pants on. Give it a good 4-6 hours and it should go away
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Hi All, I'm curious, I start tamo after radiation which is mid April, I posted earlier that I'm terrified of the side effects which it seems some folks tolerate it well, others have hot flashes, hair loss and weight gain (YIKES). I read that some take half a dose in the morning and half at night and they have minimum side effects. I talked to my dr about it and he said he doesn't believe that to be the case. He wants me to take the full dosage and we can adjust when I see him in 8 weeks if needed. I didn't ask him what that dosage amount would be but I believe most folks start at 10 mg or 20? Has anyone tried cutting the dosage in half, if so does it help and what's the max dosage given? Thanks, have a great day!
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LynnBM.....The normal dosage is 20mg. Like you, I was scared to start Tamoxifen because I had heard all sorts of horror stories about the side effects.
Let me give you some advice. Start taking the Tamoxifen when your doctor tells you to, at the dosage he wants you to and don't worry about cutting it in half and don't worry about the side effects.
Many, many, many women do just fine on Tamoxifen, but you don't hear about them because they are not vocal about it. The ones who are having issues with Tamoxifen are the ones you hear from because they are looking for support from others in their situation.
I've been on Tamoxifen for a while now and have not experienced one negative side effect. Don't worry about the side effects until you have something to worry about.
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