Bringing in 2014 with Tamoxifen!

By "fat soluble" I mean that such vitamins like A,D,E, and K can build up over time because excesses are stored in your body fat. As opposed to water soluble vitamins like C that your body just excretes in your urine if you take in too much. So you should not take high dose A, D, E or K supplements without checking with a doctor first. To see if its too much and to see if you even need it! And yes you do need vitamin D to help absorb Calcium. This is why you'll see Calcium supplements with added vitamin D or milk with added vitamin D.

The bad news regarding weight gain is that most meds don't truly "cause" weight gain (there are some exceptions - like steroids). Many meds cause increased appetite and/or fatiue which can cause a person to overeat and be too tired to exercise or make good food decisions - which cause weight gain. Most of the weight gain may be preventable with balanced diet, regular exercise, distraction techniques to prevent emotional or boredom eating, etc. I see it all the time with kids on psych meds who blame their weight gain on the meds when really what I observe is they are eating mindlessly and too tired to exercise!

Hi all. So next week I am starting a 6 week program for ladies like us that are now dealing with Tamoxifen or Letrozole. It's a support group that focuses on what we can do not what we can't. We each get a pedometer and have to count our steps as well as advice on how to deal with SE's.

If you like, I can report in weekly and share the advice. Or not, whichever. Let me know if this is of interest, if only one finds it beneficial, I can always pm that person. 

I'm looking forward to it. I want to sleep again, to not feel achy in all my joints, to not feel so fragile, to get my appetite for food back.   :-)

Hi all,

I've been on Tamoxifen since last June. I find four things have helped tamoxifen muscle cramps:

1) magnesium (which I take as Calmag)  and sometimes extra, and

2) exercise. Always feel better when I am doing yoga regularly (even at my lowly level) and go for walks. 

3) acupuncture: I'm sure acupuncture helped as well but it's expensive so I haven't been going. 

4) avoid sugar: I find that sugar causes muscle cramping and joint pain.  I was off of sugar and then I had a bunch of my kids' Easter chocolate and it immediately caused cramping and achy joints. So not eating sugar is a third thing that helps, though it may be I have it on weekends. (per 17 day diet). 

Red Reading- I'd love to hear your support group updates! I really want to try to stay positive. 

Even though I'm a year out of chemo, and a few months out of Herceptin- it's not over. The tamox and arm limits remind me that it's a chronic condition that I have to manage while trying to forget about it. Good luck to everyone!!!

Redreading, I'm anxious to hear what you learn! Please do share!

I went with a new friend (with BC) to her 6 month mammogram. She was clear and it was nice to be there for her!

RedReading I am interested in the support group you are talking about.   I am having a hard time knowing what is a side effect from this drug vs. other issues.   I was doing pretty good at the end of my chemo (eating clean/working out) and had regained a lot of my energy.   Then I had a double mastectomy early March and started Tamoxifen about 2 weeks later.   Since the surgery I have been more tired, achy, and most recently having appetite issues and gassy stomach.  I have no idea if these things could be related to the drug but I would like to learn more about how to manage them if they are.   I am still trying my best to eat clean and work out but I have had a cold and stomach bug the last couple weeks so that has been hard. 

My knees and elbows are so painful.  I quit aromasin due to knee pain and insomnia.  Yes, insomnia here too.  I don't want to quit this.  Can't take ibuprofen or aspirin.

Meg, I get the same thing!  It's kind of like when I was on my period and breasts would get sore, but periods for me have stopped since taking T.  Glad I'm not the only one.  It's not all the time, just occasionally, but I had it today.  Sometimes a stabbing type pain, other times just tenderness.  That is my only side effect, if that is one, but I know the feeling.  I'm like holy crap, am I getting it in the other breast now?!  In my heart I don't think so, though. Good luck and let me know if you learn anything and I'll do the same. I don't go back to MO until August, though. Kim

RedReading ~ would be thrilled to hear what your experience in the Tamox. support group is like.  That information may be really helpful to all dealing with such varied SE's, it seems we all have different issues to deal with weather they are mild or severe good news, positive news will always be of some value.  Thanks for the offer the share.     

Well, tomorrow is my first time at Living Well, my dealing with Tamoxifen class. I will take notes and report. O and I too have deep aches in my poor breasts. I also thought, 'oh, no, not again', but you're right - it's probably an SE. 

Thanks for the feedback ladies, yes it does help to know that breast aches/pains/tenderness is somewhat common.  I'm discovering that getting past the anxiety of minor aches and pains anywhere is going to be harder than I thought.  I was hoping to finish treatment and just move on but I am finding that I will always have some fears and questions for a very long time. 

On another note for those ladies having hot flashes...I keep a fan on all night so when the occasional hot flash wakes me up I can throw off the covers and the cool air helps "calm the flash" so to speak and I am able to go back to sleep.   The sound of the fan also creates white noise which can be relaxing for some people.   

Best to everyone this Spring!

Rettemich - For me radiation side effects were very different than Tamoxifen side effects.  With radiation, you may have skin burning or rash and radiation fatigue.  It was a drained feeling - different than just being tired. My doctor had me start after rads but others on this forum took Tami during rads.  

Welcome to this board.

Dawn

Rettemich, I started Tamoxifen three weeks before rads. I didn't know there was a difference between rad SE's and tamoxifen SE's because they all kind of started together. Rad SE's ended (except for brain fog) about 3-4 weeks after rads. Then I knew more. Rads drain you. They hurt in a very specific way. They burn you, make you peel, sometimes get infected (keep clean and if anything looks funky, ask your tech) Tamoxifen can make you feel you hit a wall or someone pulled the plug. Both together mean you will sleep, in small batches, a lot, if you're like me. But not everyone is alike. So....

OK ladies, so I have completed Living Well with Tamoxifen and AI's day 1. I need to say that I am not a medical practitioner of any kind. I'm just passing on the info I got from class. Here is the synopsis.

Tamoxifen and AI's destroy estrogen. OK, we know that but what does Estrogen do? 'It supports bone health, protects against cardiovascular disease by reducing cholesterol levels and providing a protective effect on blood vessels, and it plays a significant role in mental health.'

Common side effects of Tamoxifen are fatigue, bone or joint pain, depression, insomnia, weight gain, osteoporosis and hot flashes/night sweats. Many women think of stopping or cutting down their tamoxifen due to fear of the side effects, especially since most of us will be taking it for 5 or more years.

However, there is hope and it cures a bunch of the SE's and it's fairly easy. Believe it or not, the docs were right, it's walking. Hear me out. Surely at some point your doc or nurse mentioned it. They had a good reason, and I quote...

'after six weeks of walking, the mean joint pain scores among participants decreased by 10%, fatigue decreased by 19% and joint stiffness decreased by 32%'

OK, so how much walking are we talking here? Various studies define medium active as 7,500 - 10,000 steps daily. And that's where you aim for at first. Low active is 5,000 -7,500. I did over 400 from my class to my house - and I was driving most of it.

At the end of the study, (6 weeks remember) 100% of the participants said they would recommend a walking program to other bc patients experiencing joint pain, stiffness, or fatigue. 

OK, other stuff.

All of the women at that meeting had experienced a deep ache within the breast with bc even a year after the op. Including those with an mx. Over half had experienced the same in the good breast too, but MRI's had found nothing. I don't know what it means, but it seems to be fairly common.

25% of us had hand and foot joint pain so unbelievably bad that they could not make a fist. These ladies sought medical help and 2 were switched to another drug that helped them a lot.

Here's another odd fact. SE's are a good thing. It means the pill is working. It's killing the estrogen. Now, all we have to do is learn to handle the SE's. And if you can't, you need to talk to your doc.

Please just take what I have written as additional info for your bc portfolio. As I said, I'm not a doctor or nurse and do not pretend to be. 

What I will be doing is walking. I've got my little pedometer, and I'm going to make it work. Hard.

Hugs and kisses to all of you.

Deb

Thank you Deb...much appreciated.  Can you let me know if they say anything about itching?  I won't see my MO until June.

Thanks again.