Bottle 'o Tamoxifen

lala1

I also see a holistic doc for my SEs who has helped alot. He put me on the turmeric, ginger and magnesium for the muscle/joint pain which made a huge difference!! He also suggested a very tiny dose of melatonin for the insomnia. Definitely worked for me and after a few months I quit but still sleep very well. I think I just needed it to regulate me. And after my hysterectomy, I went to him for hot flashes/night sweats and found Peridin-C and iCool. I strongly recommend a holistic doc if you can afford it since most insurance won't pay. I felt that he, along with my myofascial release massages, were what helped me the most in my recovery.

ladyb1234

Agree Lala, the holistic/naturopathic/integrative Drs help a lot. I didn't take medicine before this journey and choose to take the alternative path when appopriate for SEs but I am one that wholly believe that it compliments standard care and does not replace. So when my PCP or MO indicate ther e is not much they can do or try a supplement I lean to my integrative oncologist. She also helps with wellness by helping me track and change my diet and exercise, ways to lower stress -- massages, yoga, and a salt soak. I stopped getting the acupuncture in August when most of my pain was under control. The salt soaks she introduced me to are heaven and there happened to be one in my area. So relaxing and a good stress reliever and helped with the sore muscles when I increased my exercise.

I should have listed my regime. I have to watch the fillers ie no yeast wheat, gluten, corn syrup so she suggested a few brands and cautions over the counter supplements due to the fillers, herbs and plant based extracts which are estrogenic. I order the recommended products from an online integrative site, Healthwave, that the integrative ONc uses. Cost is comparable if not cheaper than what I find in health or drug stores.

I take Magnesium and ginger for the muscle joint/aches and cramps, Melatonin to assist with sleep and HMC Hesperidin to help with the night sweats hot flashes, and a veg-vitamin that assist with immune function. I chose the HMC Hesperidin over Exxefor and it seemed to reduce my hot flashes significantly. I also take vitamin D. I took vitamin B6+ B Complex for my peripheral neuropathy which improved considerably and after a few months quit since my peripheral neuropathy improved. As many have stated turmeric and cumin which she has me put in my juices. I

I have an appt with her in a few weeks and will let post if there sre sny nuggets that she may give. Since I strongly believe in passing on what I can. I wish I would have found her at the beginning of my treatment. The good thing she does work in parallel with my MO and PCP and keeps themupdated on the supplements she has me on.

Blownaway

Does Tamoxifen actually damage our joints or will my knee pain go away in 5 years when I can stop taking this stuff?

loriekg

Good question, Blownaway! I want to know that as well! Also, what about the blurry vision...does that return to normal?

FastWalker

Blownaway and loriekg - I want to know that too!

loriekg - My medical oncologist told me to go for regular eye exams while on Tamoxifen because there is a chance of ocular toxicity. It could just be dry eye (Tamoxifen dries you out all over). However, to be safe, please check it out.

Wendy3

Here I thought it was old age my eyes have been getting blurrier and blurrier is that tomaxifin?  Hmmm

BBwithBC45

Ocular toxicity?? That scares me terribly. I have been dealing with blurry vision. First it was very bad during chemo, but it got better once the chemo stopped. But now my eyes have been bothering me again for the past couple of months. I do have my yearly exam coming up in a couple of months.

lala1

I've been going for yearly eye exams as well since i started Tamoxifen. My ophthalmologist gives me a thorough exam every year but also a baseline exam that was very thorough with pictures and such so we could make sure I didn't develop problems. I have those "extra" tests done every other year. My doc was very emphatic that I keep up with my eye health.

colleen1013

I also suffer from knee pain, it comes and go. Today I woke up with knee pain and crippling the whole day.

Blownaway

I bought new glasses after having an eye exam. I was told that only my right eye had changed. I guess I had been on Tamoxifen about 8 months at that point. I dont think my new glasses are any more help than my old ones.

Professor50

My eye doctor told me that if my eye issues were drug SEs, they would occur be in both eyes. I think my doctor was mostly worried about the possibility of brain mets and/or MS. Apparently, having an issue like I was having in just one eye is more likely to be MS than a drug SE. It turned out to be nothing (but it took lots of extra probing for him to get a good look at my optic nerve).

BTW, I am entering my third month on tamox for this go-'round. I first started taking it December, 2014. I made it through April and then the issues with concentration caught up to me. I did OS+Exemestane after that for a few months. But the joint issues were brutal.

The good news: I will soon be able to say that I have completed one year on hormonal therapy!

Wendy3

Colleen have you tried cucumerin take a capsule with a little olive oil and pepper. Yup I know sounds weird but my knees were terrible before tamoxifen and got worse after taking it. Someone told me about cucumerin and I started taking it and noticed within a week a huge reduction in pain.

rleepac

I'm sure this has been addressed before but I'm new to this thread and can't read over 700 pages to find my answer. So please forgive me for asking anyway.

Does it matter if you take your tamoxifen in the morning or nighttime? Not for efficacy, but for side effects? I seem to get side effects from everything I take and I'm starting tamoxifen tomorrow. I figure I'll start it in the morning and if it becomes a problem, I'll switch to nighttime. Any words of wisdom?

Bekah

superius

If I need to switch from taking it at night to in the morning, do I just skip it... tonight & take it tomorrow morning instead. I don't know if the weather changing plays into it, but I have been waking up around 4/5 am. super warm (no sweating), then to cold before daybreak when it's coldest.. I think I read somewhere on the board the hot flashes is worse about 4-5hr after taking Tamox? zzz

Wendy3

Morning ladies I've been on tamoxifen now for six months wow weird saying that. I found taking it at night helped against nausea. After almost losing my breakfast at the gym a couple times I found it better to take it at night. Night sweats were really bad but has calmed down a bit now. 

live_deliciously

ive been on tamoxifen for about 3 months now. I started in the mornings and switched to night mostly because it made me drowsy during the day. For the switch over I didn't skip any. I just delayed taking it for a couple extra hours ea day until i was eventually taking it before bed time. Not sure if that works for everyone but it did for me.

FastWalker

I asked my medical oncologist when I should take Tamoxifen. He said it really depends on an individual's symptoms. He said some people get sleepy with Tamoxifen - in that case, take it at night. He said others get insomnia - in that case, take it in the morning. . . I figured I would start off by taking it in the morning - someone on here suggested mid-morning - so that's what I did and so far, so good. *crosses fingers* (I take it around 10/10:30 am - after breakfast because I tend to have a sensitive stomach.)

colleen1013

Thanks, Wendy, I just ordered turmeric pill from Amazon, hope that my knee pain will go away

ladyb1234

I have been on Tamoxifen for a little over 7 months now and kept experimenting until I found the best time. I started out at night but it kept me up and I was out of it in the morning. In the Morning nausea and dizziness and I had heavy brain fog about mid-day. I settled for mid-day soon after I eat lunch. This time worked best for me. When switching times, I did not skip a day, I just took it at the new time and adjusted. Hope you find what time of day works best for you.

Wendy3

Colleen I took Tumeric for years and it did nothing Curcumin is somehow different it works way better. Sorry you already ordered it . If your in the states a good resource for vitamins is Swanson.com they have great prices and have deals often. Take it with a little olive oil will help with absorption. I also do half an hour on a recline bike everyday at the gym. They have a saying in Germany " Wer restet der rustet" who rests will rust. Good luck

islandmom

Blownaway, you asked if there is there is joint damage from Tamoxifen, since many ladies experience joint pain.

I started experiencing joint pain a couple years after starting Tamoxifen. It turns out I actually have Rheumatoid Arthritis (RA), which is not too common. In my case I wish it was Tamoxifen.

When I asked my rheumatologist about Tamoxifen, she said that there is no long term damage to the joints, like from RA. Hopefully, your joint pains should go away when you stop taking Tamoxifen.

colleen1013

Hi, Wendy

Thanks for the details. Yes, I have done some study and order the product called Tumeric Curcumin, it contains black pepper to enhance the absorption. I will try it and see if it works. I also go to gym and exercise everyday.

Turmeric Curcumin C3 Complex with BioPerine - 750mg per Capsule, 180 Veg. Caps - Contains Black Pepper (For Superior Absorption and Bio-availability). 95% Standardized Curcuminoids For Maximum Potency

CarolynAnne

Hi Tamoxi gals! Your posta are so helpful!

I am having left breast lift and right nipple construction surgery in 2 weeks.( rt mx w/DIEP was in Aug) Docs don't feel I need to stop Tamoxi prior to this surgery. Just wondering if anyone else had similar surgery and what you did? I worry about blood clot risk....

Thanks!

Monis

For those of you who have expressed concern about ocular (eye) side effects of Tamoxifen, please don't worry too much. I work in the ophthalmology field. Ocular toxicity from Tamoxifen is very rare. The drug has "crystals" which in rare cases can accumulate in the retina. I have never seen it in my office in the 15+ years I have been there. If you happen to be one of those "unlucky" individuals who develop the problem then stopping the Tamoxifen would resolve the issue. More commonly, Tamoxifen can cause problems with dry eye, due to it messing with our estrogen. Dry eye can cause irritation, burning, tearing, redness and blurred vision. Using artificial tears on a regular basis can help immensely, but there are other treatments for dry eye if the drops aren't enough.

SweetThing

Hi Ladies! I've been on Tamoxifen for about 1 1/2 years. I have noticed the dry eyes; I stoppped wearing contacts. They go in fine, but getting them out becomes painful. My eye doctor's wife is a breast cancer survivor, so he takes the extra time to do a through exam.

bbpie

CarolynAnne- I stopped taking Tamoxifen a week prior to my TE exchange to implant. I only had one week notice prior to surgery. The PS said not to take it the night before surgery. I worried it was not enough time. I called my MO and they stated it was good I stopped on my own. MO told me to call 3 days after surgery to make sure I was moving aroud and began taking Tamoxifen again. They said it was not good to be off. The medication for too long.

fizzdon52

Monis thank you very much for your informative post. I had worried about my eyes but feel I don't need to anymore after reading that

lala1

I had to stop Tamoxifen two weeks before all my surgeries per all of my docs. They also had me stop the turmeric, ginger and fish oil and baby aspirin. They all varied in how long to be off but the general consensus was 2 weeks before and 1 week after. It's my understanding that Tamoxifen builds up in your system so being off for this amount of time won't be harmful.

Nancdancer

Been on Tamoxifen for 1.5 months and was wondering if anyone having upset stomache and feeling like you have to poop all the time. I have been feeling nauseous a lot more lately. I take it at night around 730 and have just started to get night sweats. I may end up switching over to the afternoon and see if any difference

Wendy3

Nancdancer I have been on tamoxifen for six months now. I was sick in the mornings for a couple months or maybe even three. That's stopped I think the best time to take it is at night I aim for 8. Night sweats are pretty bad still (doing tons of laundry). But that is because it throws you into menopause that's is getting better as well as time goes by. It will get better☺️