Bottle 'o Tamoxifen

New-girl

I have been taking it now for a week. I have been paranoid about SE's so I tend to dismiss anything this early. However, I was doing an hour of elliptical at the gym and it takes every bit of effort to do it now. Just wondering if it's all in my head or if it's a SE of starting Tamoxifen.

loriekg

Katcar0001 – I am having the dry eye problem as well. I'm constantly putting in drops. And one of my eyes just hurts sometimes, like I want to close it to relieve the pain, but that doesn't really help. I'd like to know what your eye doctor tells you…

jpr143

Hi all. I finished chemotherapy in July 2015 and radiation in Oct 2015 and started Tamoxifen on Oct 28, 2015. In the beginning, I only had hot flashes and some achy joints. About mid December, I started having pelvic pain. I went to my GYN who found I had two small cysts and said my endo lining was starting to thicken. A few weeks later, I was still having pelvic pain and it was sometimes accompanied by lower back pain and flank pain. The GYN referred me to a urologist who ordered an ultrasound and then a CT scan to check for kidney stones and also to see if they could see any other cause of the pain. The scans all came back normal. In the last 3-4 weeks, I have also started to feel very fatigued. It is hard for me to concentrate sometimes and I have to go to bed before 9:00 because I just can't stay up anymore. I have also had blurry vision, dry eyes, constipation, sores in my nose, sore throat and several other symptoms. I saw my ONC this past week and he did some additional bloodwork but found nothing so he wants me to come off of tamoxifen for about 4 weeks to see if that is causing all these symptoms. I feel they have to be cause by the Tamoxifen because in December, I was feeling so much more like myself and had plenty of energy. He feels like the lack of energy may just be my treatments catching up with me.

Has anyone else had a delayed onset of fatigue after treatments or have fatigue that you feel is caused by the Tamoxifen? If it's the Tamoxifen, are other options any better? I know Tamoxifen is no guarantee of a recurrence but feel that I should do everything possible to prevent one.

Thanks for your thoughts!

MomOfTwins98

Etnasgirl - I also get very sore legs but am on gabapentin to help - I do find that it hurts less when I'm moving and better when I stand

New girl - the fatigue seems better as the days go by - radiation apparently took way more out of me than I care to admnit - got through it and worked every day but, once it was over, realized just how exhausted I was. I am in bed by 7:30 every night although I get up at 4am to work out and get going for our days. However, I've always done that so think my body just gets more tired now

LorieKG - was at eye dr last week - he said that dry eyes is a common side effect of Tamoxifen. I've had dry eyes since my Lasik in 2003 so never really put it together as a symptom - he told me that Refresh is non-habit forming and okay to use as much I need to. I use it at night before bed and, if I wake up in the night, need to reuse but don't find I need it during the day. My vision has definitely changed since being on Tamoxifen. Better now but, in the beginning, had sort of a glare over my eyes or a film. That also seems much better now as the time goes by but I had it checked, just in case.

Jpr43 - The abdominal pain and bloating is my scariest symptom - have a swollen node in groin and get bad pains in pelvis and pubic area/bone. I did have ovarian cysts that were found during an MRI for the leg pain so they were watched and seemed to have resolved but the pain is back - have OB appt this Thursday as I am just not comfortable and when I described what I felt over the phone, she told me to come in and be seen. I see a PT at the lymphedema clinic for breast lymphedema and, when she saw my bloating, she was concerned too - My last period was January 13 and that is probably not helping matters - feel like it should start any day but never does -

etnasgrl

MomOfTwins Thanks for replying to my question! I'm noticing that, like you said, it hurts less when I'm moving around and when I stand.
At this point, I have no idea if it's from pulled muscles or the Tamoxifen. I guess only time will tell. If it goes away, I guess it wasn't the Tamoxifen. LOL!

Scottiemom11

rleepac. . .sent you a PM. Indigo. . .my nails are paper thin on the Tamox, however, my hair is not thicker and growing long. No rhyme or reason. I too get fatigued but find that I feel better and sleep better if I go to the gym or hike after work so I try to do so several times per week.

Scottie

ayr1016

I think the Tamoxifen makes you more sensitive to muscle/joint/bone pain. I have some herniated discs in my back and neck and it feels like the pain has been exasperated since I started Tamox. I have found pushing through the pain (walking) helps.

I have a dry eye disease (corneal disease actually) and the Refresh Plus helps a LOT. I always have the single use containers (preservative free!) with me at all times. My corneal specialist recommended this brand.

IndigoMont11

Scottiemom1, I didn't get your message.

Interesting that some of you who are reporting eye issues haven't had chemo. I first had the scary dry eyes (on AC), and then my eyes would water so much that tears would drip down my face (on Taxotere). I did go see an opthalmologist after Taxotere, and found out I have chronic blepharitis. I still struggle with it almost 4 years later, although it has improved and can be manageable. I used some Rx antiinflammatory drops, and I also use Soothe XP drops. I haven't thought much about a connection with eye problems and Tamoxifen, although that probably makes sense, too.

RX34

I'd like to ask how long after everyone started Tamoxifen did their SE start? I'm still a rookie, having just started a week ago. I was terrified to take that first pill... I guess I expected the hot flashes to start that night but so far nada. I've had a stiff neck for a few days and I thought at first I'd just slept wrong but now I'm wondering if it's the Tamoxifen

MomOfTwins98

Good Morning RX34 - some of my SE started about a week in they'd go away and others would start. I also get a very stiff neck at times and thought it was sleeping funny but seems to happen periodically and only since starting Tamoxifen. My experience so far has been that some SE are fleeting and some stick around. I've been on since November 30

katcar0001

It's interesting to see that I am not the only suffering from dry eyes. My doctor prescribed Systane drops. If that doesn't help, then we may switch to Restasis.

Here is a very helpful article on the eye conditions that can result from breast cancer treatments, including Tamoxifen: http://www.aao.org/eyenet/article/watch-ocular-eff...

BBwithBC45

I've been having issues with dry eyes too. I tried artificial tears for a couple of months, but finally gave in and had my eye doctor prescribe me Restasis. For the first month I also have to take steroid drops (Lotemax), which makes me unhappy, because I won't be able to wear contacts. I do not like myself in glasses, but if it's supposed to help me in the long run, I'll somehow suffer through a month of wearing them. I just hope the Restasis will do the trick, because I can barely see when I'm staring at computer at work.

superius

I also thought I need new pillows or mattress! Yup! the Chills then Hot Flashes! It seems quite often while at work - I got so cold that I leave my desk for hot tea in the break room, by the time I got back to my desk, I would looking for ice water! I also have a little paper fan I keep at my desk.

Scottiemom11

katcar. . .I've used Systane and Restasis for dry eyes. I have severe dry eyes notwithstanding the Tamoxifen. My SES probably started a month in Tamox. I am taking turmeric and it seems to help. Still need to clear with MO about it longterm.

Scottie

jbokland

I was not doing well on Tamoxifen. The muscle aches and stiffness made me feel like I was 80. I could tolerate the chills/flashes but the rest was not tolerable. Doc said I had to take SOMETHING...as a stage III I am at too high risk to forgo. He let me take a break before changing

After 2.5 weeks off of Tamoxifen, I feel like a new woman! But, I am starting on Anastrozole tomorrow. I hope I don't have the same side effect of muscle pain and weakness....I'll trade those for the treat of a dry vagina! (lol).

Best wishes everyone!

RX34

Thanks MomOfTwins98. I get so anxious every time I take a pill. I keep thinking 'is this the one?' that's going to start the hot flashes. I'm basically expecting the worst but hoping I get lucky somehow

lala1

RX34--I have been on Tamoxifen for just over 3 years. I started at the age of 49 and was not anywhere near menopause. I never had a single hot flash while on it. It wasn't until I had my hysterectomy with ovary removal a year ago that I started to get them. My biggest SE was the muscle pain. That started after about 2 months and is now under control with turmeric and ginger. About a year into it, I would get a little lightheaded with maybe mild nausea which has lessened over the last year, I think due to starting probiotics. And I would get colds pretty often but not this whole winter since I started olive leaf extract. You will have SEs but they may be alot milder than you think and alot of them are manageable. My MO suggested keeping a calendar that noted when or if I had SEs as well as when I started and/or stopped any meds and supplements. It's helped me quite a bit to figure out which things help or hurt or do nothing.

katcar0001

Scottiemom - That's news to me about turmeric helping with dry eyes. I have a really good turmeric supplement but I have not been taking it due to concerns about whether or not it interferes with Tamoxifen. Would be interested to know if your MO says it's okay to continue the turmeric. Neither of my OS or MO seem to know much about supplements. Are you taking a fish oil supplement? My eye doctor said to continue with that as well (lube from the inside ).

KateB79

First dose of Tamoxifen, down the hatch.

I'm really interested in taking turmeric. Like others here, my MO doesn't put a lot of stock in supplements, but I'm a believer. I've read conflicting stuff about turmeric and Tamoxifen; anyone care to weigh in?

Kimmer33

i have been taking turmeric since 2 weeks PFC, and did not know it could interfere with tamoxifen - yikes! I am taking the spice, dissolving in olive oil with black pepper and mix it in with my juicing each morning. Yum! Who can tell me what the adverse affects are using with tamox then? Now i am worried

MomOfTwins98

Kimmer33 and KateB79 - I cleared the Turmeric spice with the dietician at our cancer center. As we've all spoken about before on this forum, there is a difference of opinion on what to take. My center said no supplement and only the actual spice mixed with black pepper and a fat (olive oil, coconut oil, etc) - However, others here take the supplement, get relief, and are fine. I always ask the ones I trust before taking. I've been taking turmeric mixed with pepper and sometimes ginger and honestly, dont feel any difference but going to continue - figure it cant hurt i mix in with egg whites as a scramble too. I also drink the Yogi Joint tea made with turmeric each morning. I started taking magnesium as we've all discussed too - Started with Citrate but made me very ill so back to oxide. Have ordered the Glycinate which is supposed to be excellent to help me sleep but has not arrived yet (hard to find locally) - Oh..I was also told that the Turmeric should be heated...not sure if that is true but that's what I do - If you mix in juice, must be cold? Again, 10 asks can get 10 differing answers I try to take all I read and hear, sift through it, and make the best decision I can. Personally, I feel that the tamoxifen is essential so I take a big breath, swallow it, and pray each night that it does its job.

PS - As much as our center does not believe in supplements, they did okay and suggest calcium and Vitamin D so I take those each morning - again, not within 2 hours of Tamoxfen so I take them in the morning and the Tamoxifen at night. Hope this helps.

lala1

Yep, MomofTwins is right. Ask 10 different MOs and get 10 different answers. You have to just pick who you will trust. My MO looked up some articles on turmeric before he ok'ed it:

CURCUMIN induces cell death and restores tamoxifen sensitivity in the antiestr

CURCUMIN Modulates Tamoxifen Response in Resistant Breast Cancer Cells.

These were just a couple that I found. My MO told me from day 1 that he wanted me on a daily aspirin, a multivitamin and fish oil. That was all he recommended. Then when I had joint pain, he said Osteo BiFlex which did nothing for me. He also said NO soy, Vitamin E and grapefruit. He's not into supplements and stuff, or at least he wasn't till I started researching everything and questioning him. Now he's gotten more interested, especially in how much the turmeric and ginger have helped me. I think this whole process of BC just "evolves". You learn to get more involved in your treatment and doctors become less scary so you question them more. My dad is a doctor and he's always telling me that "doctors are a dime a dozen. If you don't like the one you have, there's another one on every corner. It's a long term relationship that involves alot of trust so find one that speaks to you." That advice has worked well for me.

MJS1266

 The whole question of supplements effects on Tamoxifin is very confusing as you say each doctor has a different answer.  Because of comments on here about calcium and Tamox, I asked my MO who was just appointed research director of a newly established cancer research center.  she said she recommends getting vitamins and minerals naturally from your diet.  When I explained that I have mild Osteopenia, she said there is no evidence that calcium interferes with Tamox and that it is OK to take at the same time.  The only over the counter drug she said to avoid is Benadryl which somehow interferes with the absorption of Tamox.

LynnBM

Hello, I was diagnosed with Stage 1 BC Grade 1 IDC in January. Since then I have had a lumpectomy and 2 nodes removed with clear margins and nodes. I am starting radiation next week for 3-4 weeks. I met with my oncologist last week and was informed that the cancer was hormonal and he wants to put me on Tamoxifen for a year. All of the reviews that I have read on this drug have not been good and I wanted to see what everyone has experienced while using the drug.

Thanks for your help!

ORgal

Lala1, I'm curious why the doc said no vitamin E. I hadn't heard that before and I take it. I guess I need to do some research.

LynnBM, I think you'll hear lots of different experiences from many of us. I have several side effects. Each one is not a big deal, but they are irritating to live with all together. It took a while before they started.

lala1

ORgal--He said it was considered estrogenic. He told me to just try to find a multi with as small an amount as possible to reduce my exposure to it. But he also said he wasn't too concerned as long as it was the usual amount in a multi which is usually about 30mg. He just didn't want me to take any extra Vitamin E supplements.

twiggly

Hi lala1. May I ask you a question? I was diagnosed over 3 yrs ago and on tamoxifen. Not really having too many "horrible" side effects that I was really worried about however the conversation of removing ovaries has come up to eliminate estrogen all together. I see you have had that done and wondered about the surgery and if it was difficult to undergo?

Lvbugs

how come some are on Tamoxifen for years and then the suggestion of ovaries to be removed is done. You would think it would be suggested to do it at the beginning. Just wondering.

twiggly

Yes, good question. In my case my body is resisting the tamoxifen. I have been on it for 2.5 years and still not really experiencing any menopause. The shift is to eliminate all estrogen in my case but I am terribly worried about quality of life and all the symptoms of crashing into menopause vs. cruising into it slowly with tamoxifen. My recurrence rate is less than 10% and I feel its a little drastic to undergo more surgery......such a hard decision

Lvbugs

How do you know if resisting the Tamoxifen? I have one ovary and still no SE. MO said most people don't have SE. Hope that's true, because I wonder if it is working