Bottle 'o Tamoxifen

colleen1013

I am down with a fever (102.5), is the any restriction to take tamoxifen when in fever

RobinLK

No restrictions on taking it that I am aware of, but you should be seen with a fever that high.

colleen1013

Thank you, Robin.

CarolynAnne

bbpie- thanks for your answer! I don't understand the different opinions about stopping any meds before surgery!

At my preop physical, I was told to stop aspirin, fish oil and glucosamine 5 days prior to surgery but no need to stop tamoxifen.

Monis- thanks for the info on the eyes. I had heard about risk of cataracts but not toxicity. Glad to hear it is uncommon! I had a thorough eye exam just before I started tamoxi and my eye doc said that I am at risk for cataracts. Don't know how they can predict that. So we will see.

Anybody else have hip pain and stiffness? Mine is really bad at times.

Healthy Holidays everyone!

bbpie

Just had my 3 month follow up with MO this morning. I mentioned my hip pain and stiffness. He stated it was most like from the chemo instead of the Tamoxifen. All blood work was great except very low iron levels

Sjacobs146

I started my yoga practice just after finishing treatment last year. It has really changed my life. I used to be stiff after sitting or lying too long, no longer. There are several studies that say yoga is beneficial for BC patients. If you're having joint pain and stiffness due to Tamox or whatever, give yoga a try!

rleepac

I hate to be a Debbie-Downer all the time (although the lately that's how I feel) so I wanted to share some good news.

Our rental house SOLD yesterday! We no longer have 2 mortgages to pay and I can't even express how relieved I am. We did come out ahead a bit so we will also be able to pay most of our bills off. First stop is to pay off my hospital bill. Having to make a payment to the hospital every month just feels like another slap in the face, so I'll be glad to get rid of that one!

Also, today I made the last payment on my car - yay!!! We didn't even need to spend house proceeds on that one because I was at the end on my loan anyway. I've never been without a car payment so I'm so excited!

If nothing else, 2016 will be a better year for me financially. Whew!

Anyone else have good news? I'm feeling inspired to draw the good out of y'all...

Bekah

lala1

Yoga changed my life as well. I was walking like a 90 year old woman and now have very little problem. I do hatha yoga when I can and am currently doing a yoga stretch class twice a week. I think it's one of the most helpful things I do for my muscle/joint pain. If I skip a week, I can really tell.

TeamKim

Thanks for the suggestion of yoga -- I have been walking between 5 and 6 miles a day, and so far my nearly 2 years of Tamoxifen has been pretty smooth, but recently I have had a lot of pain and stiffness in my right hip and knee as well as a lot of pressure in my shin -- kind of feels like shin splints. It comes and goes, usually worse at night. I will try the yoga and stretching -- any other ideas

lala1

TeamKim--In addition to yoga and a regular walking schedule, I take 500mg of Gaia Turmeric, 500mg of ginger and 350mg of Magnesium. The magnesium is split between a 200mg dose of magnesium glycinate in the am and a 150mg dose of magnesium chloride (SloMag from Walmart) in the pm. I've gone from a 8-9/10 on a muscle/joint pain scale to a 1-2/10. Made all the difference in the world for me. And as an added bonus, I sleep very well (usually 8 hours a night with only a couple of wakeups due to night sweats which are fairly quick and mild) and my "system" as become very regular if you know what i mean!

If I didn't have what I believe to be a chronic sinus infection (runny nose and pain in my head when I bend over), I'd be very happy. Oh, and within the last couple of weeks I seem to have developed what I'm thinking may be tinnitus. I have a very high pitched mild whistling noise mostly on the left. Wonder if the two are related.....

rleepac

Does Tamoxifen raise cholesterol

TeamKim

rleepac -- I have read that it has a good effect on cholesterol and decreases risk of heart disease. Here is an excerpt from an article I read on cancernetwork.com:

Tamoxifen and Lipids

Even for breast cancer patients, coronary heart disease (CHD) is a major cause of morbidity and mortality that increases after menopause. Thus it is important to consider the effect of tamoxifen on the lipid profile and how changes translate clinically. A number of investigators have reported on the effect of tamoxifen in reducing serum cholesterol levels.[2] In fact, clinical trials have reported an average decrease of 13% in total cholesterol and a decrease of 19% in LDL cholesterol (Table 1).[2] No clear correlation of tamoxifen treatment with changes in HDL cholesterol levels is evident from available data. Although HDL is a more sensitive indicator of risk for atherosclerosis than is LDL, there is evidence that both LDL and total cholesterol values can have profound effects on the incidence of cardiac disease. The Framingham Heart Study found that a 1% drop in total cholesterol was associated with a 2% decrease in CHD.[4] Major clinical trials have provided supporting evidence on the implications of tamoxifen treatment related to CHD. The Scottish trial has reported that breast cancer patients treated with tamoxifen for five years have half the risk of suffering a fatal myocardial infarction compared with control patients treated with tamoxifen only on relapse.[5] In addition, the Stockholm trial has documented a significant reduction in hospital visits for any heart disease-related problems in tamoxifen-treated patients compared with control patients not treated with tamoxifen.[6]

- See more at: http://www.cancernetwork.com/review-article/risks-...

Hope that helps with your question

rleepac

Very interesting...thank you! I find it odd that my total chol when up significantly but I'm not too concerned since my HDL is nice and high at 88. I was just curious so thanks for the article

shelleym1

the anxiety, dizziness and up and down mood is getting more frequent and intolerable. I'm six months in now. Don't know if I can make it a year let alone 10 years. Side effects weren't bad until the last month.

marijen

Why Tamoxifen doesn't always work.

http://www.medicalnewstoday.com/articles/303942.php

lala1

shelleym1---I'm not sure what other things you are doing to try to mitigate the side effects of Tamoxifen but I've found some that helped me. I take turmeric, ginger and magnesium which help with the muscle/joint pain and also give me better sleep. And exercise has helped alot with my pains as well as improving my mood swings. And yoga has helped a huge amount with my anxieties as well as my periodic high blood pressure and heart rate (both of which seem to skyrocket every time I go in a doctor's office and are normal or below normal when I'm at home). And I take Peridin-C and iCool for the hot flashes which reduces their frequency and intensity by at least 50%. Maybe some of these things will help you. And I do think it gets better. I've been on it for nearly 3 years and found year 2 to be the hardest.

calidancer

I've noticed some ear ringing too. Not all the time, just occasionally. I do think sinus issues can be related. I'm pretty much always a little stuffed up with allergies but don't like the way the allergy meds make me feel spacey so I grin and bear it and use saline nose rinse and Sudafed if it gets really bad.

As for Tamoxifen generally, I am 3 months in and doing fine. Seem to get hot and sweaty at night sometimes but not too bad... I've had to change my shirt a few times, but I go right back to sleep. Maybe more frequent urination and slower digestion, but could be because I've been out of the gym and on antibiotics per my exchange. My biggest fear was sexual side effects, but so far so good... Maybe better than pre bc. 😜

jedimom

Howdy bbpie,

I finished my chemo in 11/14 & my rads in 2/15, started Tamoxifen 3/15. Since 3/15 I have the same issues you have. Stiff hips & legs, my calves cramp at night, & during the day the are so sore I can barely walk. My hands swell & tingle, I have trouble w/ my typing accuracy & I can no longer open jars. I know the lingering neuropathy is from my chemo but the other stuff I think are side effects of the Tamoxifen. Also, since starting the Tamoxifen I've put on 20lbs. The first month I was on it! I'm still having pretty bad fatigue, not sure what to contribute this to. My MO says these side effects are rare & diet & exercise will help immensely, but I just don't have the energy

I'm not complaining I am incredibly happy to be alive & in the shape that I am. I just don't like being told it's not the Tamoxifen. It is the Tamoxifen.

Good luck & God Bless.

P.S. Maybe I'll try yoga

Wendy3

Jedimom funny I lost 10 pounds on tamoxifen and I know it's that because I'm having no other treatment. I do work out every day so maybe that's a part of it. Sorry to hear you are having such a tough time with tamoxifen . 

colleen1013

jedimom: I have the similar symptom like yours, calf cramp, stiff legs, wonky knees, joint pain from Tamoxifen , however I force myself to do exercise ( I used to be sedate and gained 30 lbs in pass three years), after diagnosed with BC, I totally change my life style, I watch my diet and go to gym right after my chemo, since I took tamoxifen I have lost 12 lbs. I know the feeling of fatigue , however I will do whatever to reduce the chance ofrecurrence .

6doggies

CarolynAnne, YES to your question regarding hip pain and stiffness, mine started during Chemo and my left hip is worse than my right. I get up slow but once I'm up, I'm good. I just completed my first bottle of Tamoxifen today. I mentioned the stiffness to my MO and he said that is quite common, my tailbone and elbows hurt too, do yours??

ChristyJ

I have my 6 month visit with my oncologist tomorrow. I'm debating staying on Tamox. I've been on it a little over a year and am feeling like I'm experiencing different side effects lately. My hair is now thinning and my memory is sucking more & more. I'm 46. I haven't had my period since around May, and my libido is meh. I've always enjoyed a great sex life, and it is important to me (plus I've only been married for 3 yrs-second marriage).

I have LCIS and a significant family history (genetic testing was all fine), and I worry that if I go off it and something happens, I'll always regret it. And on the flip side I'm not liking the fact that I feel like the memory part is affecting my work, plus the other side effects I mentioned.

Thoughts?

HappyHammer

lala1....yoga is the best way I knows to deal with muscle and joint pain....but haven't been doing it while trying to deal with the other stuff...moving back into yoga....am in SC...Rock Hill....are you nearby?

lala1

HappyHammer---I'm a couple of hours from you in SC. I'm just over the river from Augusta near Aiken.

Jedimom---try to do some exercise and/or yoga even if it's just a small amount. I've found that if I miss a day or two, especially of yoga, my pains get worse as does my mental fog. I've bought myself a fitbit that measures my heart rate and have discovered that my resting heart rate will go up if I don't get enough exercise which then makes me feel nauseous and dizzy and my hot flashes increase along with heart palpitations. All of these SEs can be attributed to the Tamoxifen as well as to the surgical menopause I was put into back in Jan. Regardless of the cause, walking on the treadmill and doing yoga a couple of times a week make a HUGE difference in how I feel on a daily basis. If you can find an exercise group based around cancer survivors, even better. That's how i got started...at a gym that offers a class that your physician refers you to. They helped me learn to use the equipment and set up a routine that I could handle. They even taught me some yoga moves so that when I finally went to a class, I didn't feel stupid!! Give it a try, start small and let me know how it goes. Good luck!

shelleym1

I'm going to have to take a crack at the whole exercise thing. I despise exercise, but I really don't want to stop Tamoxifen.

ang7894

I stopped tamox and never felt better. I was on it 2 1/2 years. Way to many side effects. I sleep all night now no sudden hot flashes no pain. Some of you take this or that I hate the kind of ad's and pills that say take this and get rid of what ever then oh wait you have 10 more things of side effects when taking it. I take no medications I am back to my old self before dx In fact my doctor told me to add 5% to your reoccurrence % from your original reoccurrence % I am happy with my decision and am 4 years NED as of Dec 12th 2015

jedimom

Thanks to everyone for the good advice. I haven't taken a Tamoxifen since Monday & I'm feeling soooo much better. I actually had the energy to walk my dogs today. I think I'm going to stay off the Tamoxifen until after the holidays, and start again in 2016 with an exercise plan. There must be a way for me to make friends w/ Tamoxifen.

Luv to all

CarolynAnne

Bbpie- interesting!  I have hip pain too which didn't start until about 2 weeks after I started Tamox in Sept. For reference, I finished chemo July 20, had surgery Aug 17.   I was wondering if just not being as active post-surgery and starting Tamox at the same time caused the hip issues. 

So did your MO offer any suggestions to alleviate symptoms?

CarolynAnne

6doggies- my pain is really just in my hips, so far anyway!

I am losing eyelashes again. Lost them all, along with eyebrows after I finished Taxol and they had grown back in pretty well. Now they are going again. Is this also a lovely SE Tamoxifen??

I am so worried that my hair is going to stop growing back and I will have this pixie cut forever. Not that there is anything wrong with a pixie cut! If it looked good on me I would love to keep my hair this, but it just doesn't!

Has anyone had the option to switch to an AI and decided to stay on Tamox? Since I have now been put in menopause, I am wondering if my MO will want to switch me over at some point. I know they both have their SE's!

Healing Holidays!

Suzanne50

Hello all - I just filled my first script for Tamoxifen and have to take the plunge with first dose. I am putting it off till after holidays - January 1st start. I hate that I have to take this drug but am thankful that there is something that will help prevent my cancer from returning. So that is a blessing. I have started reading your posts and of course a bit nervous about the whole thing but hoping for little SEs. I love to exercise and would be very upset if tamoxifen interfered with my ability to go for a run. The whole thing scares me as I have really never even been one to take aspirin. But my whole life has changed since BC diagnosis.