Bottle 'o Tamoxifen

lala1

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.

solfeo

No one said anything to me about regular eye exams at all, let alone every six months! I have mentioned that I wake up in the morning seeing black spots in front of my eyes, which I thought was caused by sudden exposure to bright light since I've been sleeping in pitch blackness since I started taking the tamoxifen. It only lasts a few minutes so I would have ignored it if not for reading about possible eye problems on this thread. I did see the eye doctor and he said everything is fine, and not to worry about it unless the problem gets worse. No suggestion to follow up every six months.

solfeo

Tamoxifen vs. AIs - I'm looking forward to switching to an AI, which my MO said I can do in September if my period doesn't come back before then. That will be one year from my last period, which was 2 months before I started the tamoxifen. My reason is because I feel limited in the type of supplements I can take due to interactions with tamoxifen, and if the side effects are so unbearable I can always switch back to tam. My aunt has been on letrozole for 6 years with no side effects and since we share some genetics I'm hoping I'll have the same experience.

For those of you eating flaxseed, please check into the issue of cadmium contamination. Cadmium can increase the risk of breast cancer. I do eat it but I only buy flax grown in low cadmium soil. There is only one area in Northern Canada where it is grown. In fact, it's the only place from which flaxseed can be imported into Europe and meet European standards for cadmium contamination. The US FDA sets no limits. http://foodforbreastcancer.com/foods/flaxseed

ksusan

My ophthalmologist said once a year, based on the state of my eyes.

KateB79

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.

lala1

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.

KateB79

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.

bikefam

Kate: I like your tagline "Scars are tattoos with better stories". I'll have to remember that.

keepwalking

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.)

KateB79

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!

Professor50

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.

momwriter

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-

Loral

My liver enzymes were up too, MO said it could be Tylenol.....

beachw3

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

ORgal

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?

mdoc524

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

KateB79

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!

lala1

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?

loriekg

KateB79--yes, I have had the weird skin prickly feeling too...mostly felt in the shower. It's almost painful, but luckily fleeting.

molliefish

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????

Sjacobs146

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

rleepac

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

LynnBM

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!

etnasgrl

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.

One_Bad_Boob

Went to my primary care doctor and had lab work done. I am prediabetic. Diabetes runs in my family but I've never had an issue with it and have been tested several times for it. I find it quite interesting it appears after I start taking tamoxifen. If there is a link between the two, that's one more side effect I wasn't warned about. I'm so frustrated. Haven't been able to find anything about it though. Anyone else been told this or been diagnosed with diabetes after taking tamoxifen?

ksusan

No, but I have had diabetes from before Tamoxifen.

lala1

"Don't worry about the side effects until you have something to worry about." That's some good advice, etnasgrl!

I'm one of those who is doing really well on Tamoxifen. I'm about 3 1/2 years out from diagnosis and the one thing I've learned is to just let go. My best friend was just diagnosed about a month ago with an aggressive form (ER/PR-, HER+) but docs are very hopeful for full recovery. She just had her first chemo 2 weeks ago.I'm struggling to help her because I didn't have to do chemo or rads. But I have offered my biggest piece of advise and that is to find a way to reduce stress. I truly believe it is one of the biggest factors in getting cancer. I wish we could all learn to minimize stress and maximize self care. I used to be a world class worrier and one of those women who put every one else first. No more. It's me first now and I no longer sweat the small stuff. Now I'm happier and healthier than ever.

And Tamoxifen? LynnBM--You just beat cancer. Tamoxifen can suck it! You got this!

superius

Saw my MO last Friday. Things are ok. She mentioned Effexor for Hot Flashes.

She also said, "Situations & relationships change, let me know if it does. Don't get pregnant while on Tamoxifen, it can cause birth defects. Do not use pills (hormone). No period doesn't mean eggs not viable.".... ok. doc....

Will see her again in 6 months (alternating with surgeon, so dr appt every 3m)

Beachbaby65

Two things, I took effexor and had an allergic reaction after two months and it was HELL getting off it, my a1c before bc was 6 ,so I was pre diabetic but after 8 months on tamoxifen it was 6.4 . Part of that is weight gain but I started on metformin three months ago and its dropped to 6.3 and my cholesterol has dropped 50 pts. There have been studies suggesting that tamoxifen and metformin work to lessen the chance of it coming back, so I will continue taking metformin for now.

KateB79

lala, I'm with you. Totally. Stress is the pits, in more than one way and for more than one reason. I was a real type-A, high-achieving, absolute nose to the grindstone all of the time kind of gal, and now I'm waaaaaaaay more relaxed. I'm still getting used to it, but it sure feels better to let the petty s*** be petty s***. I credit a combination of cancer, therapy, and learning to do yoga (which, at its core, is about showing up for yourself to do it) with the shift.

Re: supplements. . . . I'm not sure if the vitamin E helps with the hot flashes or not. It did while I was doing hard chemo--I know that because I came off of it for surgery and the hot flashes came back with a vengeance--and I think it started to work again while I was doing rads. Now, though, they're back. I only really get them at night; I'll have a mild one when I get home from work, a mild one right after I turn off the light, and 2-3 drenching sweats every night. It's messing with my sleep, which sucks, but I suppose I'll get used to it eventually.

I tried Effexor months back, but it wasn't for me and I recognized that pretty quickly. That said, superius, it works well for a lot of folks.