Bringing in 2014 with Tamoxifen!

thanks Salina888. i think and i know i'm being impatient. i felt the soreness around January/February and I remember I was having PT and lymph therapy (not because of lymphedema but due to tissue cording). By March the wrist pain was obvious then the left elbow and forearms. later on, i noticed both shoulders and elbows but the most irritating is the right wrist pain which i can move but there are sudden shooting pain at certain movements which i cannot point exactly what. i try to be as active as i can. i resumed climbing last February and only stopped due to the reconstruction surgery last April and I haven't gone back yet. I used to go for yoga classes but when i had the expander, i was doing the poses on my own choosing poses I can do. now i cannot even lift a carton of milk without pain nor a 2 lb dumbbell without my arms going shaky. i walk - 2 miles at least on treadmill at an incline, go for long hikes and try to build endurance but i can feel i'm weaker than i was in February or March, I cannot rely on my arms or legs as much and at one time I rolled on my side as i was high stepping during a hike. I ended up on my back in the middle of Best Buy aisle as I cannot get up from a crouch as I looked at something on the bottom shelf. what scares me the most is for the pain not to go away. i cannot go back to work with my hands shaky. and it's been months now. i read in other entries that it goes on for years.

just a quick note....just saw my MO.  Confirmed my aches in places that I've have previous injury was valid.  I'M NOT AS CRAZY AS I THOUGHT.  Yeah!  If you have arthritis tamox will make that ache more.

Laurie

Hello ladies.

Well since achy bones, muscles and joints seem to be high on the list, I thought I'd chime in with what I learned about that subject at my Living with Tamoxifen class.

First off, it is a very real and serious side effect. Please don't let your medical staff downplay it. It affects your quality of life.

Second - exercise. If you can only manage a walk around the block, do that. Transition moves are difficult so lunges or squats will hurt much more than walking will. 100 Participants in a walking study reported that after 6 weeks of walking, the mean joint pain scores had decreased by 10%, fatigue decreased by 19% and joint stiffness decreased by 32%. Stretches are better than weight bearing exercise because Tamoxifen makes ligaments and tendons a tiny bit more brittle.  Work up to weights slowly. 

Third  - if your pain is really bad, some medications may help with that. Tylenol Arthritis, Advil, Ibuprofen and Motrin have been known to help. I take 1 Tylenol Arthritis each morning now, with the approval of my MO and it does take the edge off. She said what we are going through is very close to Arthritis, which is why it works for us.

Fourth - in the vitamin dept - Glucosamine with Condroitin is recommended. Calcium 1000mg with up to 1200 IU of Vitamin D attached. Copper, Magnesium and Zinc will help  too. There is actually a Caltrate product that has all of those in them. Do not take iron unless your doctor feels you need it for your blood. There are a couple studies that suggest iron might be used as a binder by cancer cells. l don't know much about that except my MO said no iron supplements for that reason.

I hope you are all on the road to recovery and can put achy bones, muscles and joints into the past. A reminder that I am not a medical person in any way. I am just passing on what I have learned at class.

Have a great evening everyone.

thank you red!

Yes,  thank you,  Red.   Very helpful! 

thanks, red!

Great question rozem, I was wondering the same thing. Been noticing mine are getting brittle too.

Hopefully you will find Tamoxifen manageable as I did. The only side effect I had was hot flashes at night. My OC prescribed a low does blood pressure pill wish I took at night. This allowed lowered my fatigue level to manageable. After the first year my hot flashes were the same with or without the blood pressure pill. I took Tamoxifen for 2.5 years and have now switched to Letrozole.  

Hi Ladies, I'm new to this board and have gone through quite a few of the posts but I have a question. Is there a post that gives a good list of all questions I should ask my MO with respect to taking Tamoxifen? He spent an hour going over everything with me. The good, the bad, and the ugly. In the end he said go home and think about it. It's up to you! And I know it really is up to me. But, if your doctor gave you a choice what was your criteria for deciding what to do? I am so confused. Wondering if I can do just as much good with diet and exercise. I have read so much I think my brain in on overload and don't really think I will come up with a decision my the time I see him next week. Thanks for the help!

Try taking BioSil, It's for Hair, Skin and Nails!  It's supposed to strengthen and thicken hair, Strengthen nails, promotes healthy bones and joints, and it even is supposed to reduce fine lines and wrinkles! Someone suggested it from a previous post, and it's been working for me.  My body aches were still there, but when I combined with glucosamine and weight lifting, I barely notice my joint pain.  The only thing that still bugs me is the hot flashes, but I sleep with the fan on, so that helps alot.  

Hi rettemich, not sure if the blood sugar thing is related to the Tamoxifen. I've not heard of it as an SE - but then, I'm also not a doc. Glad you called for an appointment though. A quick question though, are you diabetic? Because I wouldn't have a clue what my blood sugar was at any time. If you are testing daily and noticing wild swings, I think you need to look at what you are eating too. Sometimes in an effort to get all kinds of good stuff into our bodies to fight the cancer, we can inadvertently cause other problems. Like eating more soy or flax isn't a good idea. Just saying.... as my DD would say.

Small vent

I was rereading my Tamox patient education papers that I received from the Dr. and boy do I feel dumb.

First words on this form is:

"Tamoxifen is an oral (PO) chemotherapy agent used alone or in combination with other therapies to treat cancer."

I never realized this was considered in the chemotherapy family. After researching I guess it's because it changes the cells.

Geeze is there anything we can do that doesn't screw up everything.  

I might be checking into DIM before I even thought I would.

My oncologist wants me on Femara which I will give a try. Went to the pharmacy to pick it up only to find out that my insurance won't cover it. Just another bump in the road.

momwriter, my oncologist recommended Femara for me today. We talked about side effects and there are different drugs to counteract those which I hope I don't get. That's if I get to take it. My insurance has denied payment for any hormone inhibitor drug. He did explain that Tamoxifin and Femara are not oral chemos they are inhibitors. Heck, insurance would probably cover chemo but not a drug that would keep the cancer from coming back. My doctor is going to fight them on it. I will keep you posted! The one drug he mentioned was Effexor for hot flashes. It's an anti-depressant so why it works for hot flashes I couldn't tell you. The other problem is bone pain but he mentioned a shot that can be give every 6 months to combat that. Can't remember the name. But both of those are only if you get those side effects. Some people have no problem with it at all!

KLJ, I can't believe your insurance won't cover hormone inhibitors. They're so cheap, relatively, and effective. I would have thought it was required to cover them.