Bringing in 2014 with Tamoxifen!

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  • DawnCT
    DawnCT Member Posts: 143
    edited May 2014

    Thank you Deb!  Very interesting.   I will look forward to your next report.   It is very kind of you to share with us!   

    I have been doing a minimum of 10,000 steps daily (for about 6 weeks)  and I do think it is helping! 

    I have not ha

  • JWoo
    JWoo Member Posts: 1,171
    edited May 2014
  • annika12
    annika12 Member Posts: 433
    edited May 2014

    I started tamo. while rads was going and did good. I did have some muscle issues with rads that got blamed on tamo. but disappeared and that's OK by me :) Back of my knees hurt and I move like an ole lady but when I get going I feel great. Back to running and soccer is in fill swing . I warm up slowly , stretch like crazy then use heat at night seams to work for me :) Sure beats the alternative !!! 

  • lisa2012
    lisa2012 Member Posts: 652
    edited May 2014

    Yes, Deb, thanks!

  • MEG2
    MEG2 Member Posts: 114
    edited May 2014

    Thank you, thank you, thank you Deb!!!  I am one of those ladies having the breast pain in the non-affected breast but hadn't found too much information on-line about this particular SE.   It's such a relief that this is common and talked about in such a class. 

    In regard to walking: I am participating in a research study for BC survivors at a local university.  The study is to look at how physical exercise effects cognitive recovery in recent BC survivors.  They had us do some cognitive tests early on and then 12 weeks of exercise, I am in the treadmill group and am walking between 2 - 3 miles a day, 3 times a week.  I started the study 2 days after I started Tamoxifen and have had only mild aches and pains in my fingers and toes, certainly nothing that affects my quality of life or requires any pain medication.  I have only an occasional foot cramp or stronger pain in my hand.  I am sold on the fact that walking can help, I also walked as much as I could during chemo (given weather conditions and how much energy I had/didn't have) and I got through those scary drugs fairly well given what some of the SE's can be.  I would say if you can do nothing else on the exercise front a good walk every day will help you feel better physically, emotionally and mentally.  

  • Ridley
    Ridley Member Posts: 634
    edited May 2014

    Deb - thanks for the update from your class.  I'm a big believer in walking, and love love love my fitbit, which is really a glorified electronic pedometer.  

    There is a really great YouTube video about the benefits of exercise, including walking,for all kinds of things.  Google "23 and one half hours" and Mike Evans if you are interested,  

  • Stenokim
    Stenokim Member Posts: 172
    edited May 2014

    thanks for the info, Deb. I'm a bit confused about the paragraph on what estrogen does because my MO told me that the tamoxifen is good for my bones, heart and cholesterol.  My grandpa's 98 yr old girlfriend fell down a flight of wooden stairs last year, didn't break a single bone, and her doc said it was because she had been on tamoxifen in the past after having BC. As for the SEs, I have nothing except no periods since I've been on it, and the occasional breast pains, usually around when I should be having a period.  I do exercise daily, walk/run at least a mile, then lift weights pretty heavily.  I'm building muscle really well, and my husband who has always been a weight lifter said some male body builders take tamoxifen to block any small amount of estrogen they may have and it helps them build muscles bigger and quicker.  I don't know how they get ahold of the tamoxifen though.  I guess the same way they get illegal steroids.  Keep sharing what you've learned. It's greatly appreciated!  Kim

  • DawnCT
    DawnCT Member Posts: 143
    edited May 2014

    Hi Stenokim -  I would be interested to hear what you are doing for weight lifting!  I have been exercising regularly too since starting Tamoxifen but really need to add weight lifting.  I am not sure how to get started!  

    Dawn

  • warriorchick
    warriorchick Member Posts: 14
    edited May 2014

    I live in Florida and try to get most of my exercise by walking on the beach on weekends. I've been on Tamoxifen for a month now after radiation and chemo and haven't had any issues with the sun or the beach. I'm hoping that continues..... 

  • warriorchick
    warriorchick Member Posts: 14
    edited May 2014

    I live in Florida and try to get most of my exercise by walking on the beach on weekends. I've been on Tamoxifen for a month now after radiation and chemo and haven't had any issues with the sun or the beach. I'm hoping that continues..... 

  • corky60
    corky60 Member Posts: 726
    edited May 2014

    I have an appointment at the end of the month for nerve conduction studies for carpal tunnel.  It started after four months on Aromasin and has continued on tamoxifen.  Some days it is bad, other days I barely notice it.  But I have been sleeping with wrist braces since December.  And now my elbows hurt too.  My PCP says it is musculoskeletal .  I took a light (2 lbs.) weight class at the Y and my elbows let me know not to do that again.  So now I take a bit of pain med for the elbows when it is too much.  Can't take aspirin or ibuprofen due to reflux.  Yes, reflux is new too since tamoxifen.  If not for the supposed bone density benefits of tamoxifen I would not be taking it or anything else.

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Corky. I'm not nearly as bad as that, my joint pain seems to have centered in my hips and knees. I hope someone finds something to help you soon. 

    Tonight is lesson 2 of Living Well with Tamoxifen and AI's ladies. Hopefully, we will learn some new things and I will be talking to other ladies who are suffering the same kind of SE's we are. I'm still walking although I had one day of only 1380 steps - I was really in pain that day. On the good side, I had one day at 6157. Felt proud of that until I realized it was the day before I felt so bad. So I guess moderation is the goal here. I'll stick to about 4000-4500 for now.

    Talk to you all later.

  • Stenokim
    Stenokim Member Posts: 172
    edited May 2014

    Dawn, I do mainly free weights.  I do shoulders and legs one day, biceps and chest one day and triceps and back one day.  I had my surgery the middle of December.  The lymph node dissection has caused me the most problems, but I started with 2.5 pound weights on shoulder presses and I'm now up to 20 lbs.  I'm a small person, but I've finally gotten my shoulders broader than my hips and I'm loving it!  Lol. I definitely feel better as far as the under arm and chest go after I'm done working out.  I still have a lot of numbness with pain (oxymoron I know), and quite some pain and swelling in my back/side area where my drains were, but after I work out, it definitely is a lot better.  I thought it was lymph edema but have been told it's not. They probably left a sponge in there or something during surgery.  I have to admit I'm becoming somewhat addicted to the weight lifting.  I was very into it years ago in my 20s, then stopped for all these years, but BC got me back into it.  They say estrogen likes fat, so I'm trying to be lean and mean. Once you start seeing the results, it makes you crave more.  Good luck, hope you enjoy it as much as I do.  

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Living Well with Tamoxifen and AI's lesson 2.

    Well today we talked about a lot of personal stuff that I, obviously, can't pass on. But I did learn some new things.

    I am the least physical of all the ladies there. I can blame it on my back, but I also know I don't do the necessary work to be a really good qualifier for athlete. And you know what? I don't want to be an athlete, I just want to be healthy, so I will work on that.

    So I learned the important thing is to set a goal. This should be 500 steps more than you did last week. I averaged 4530 so next week's goal should be 5030.

    I also learned that in the medical community, sitting is the new smoking. A lot of jobs involve sitting, so does watching TV and being on the computer. So how to mitigate these things that rob us of health?

    It's relatively easy and you've heard it all before. Park further away, take stairs instead of elevators. 10 minutes of exercise IS worthwhile. 

    It takes a bit of work. Can you fit it into your schedule? Is it something you enjoy? Is it convenient? 

    Here's a few suggestions... go for a short walk after dinner. Do some gardening. Take a 2 minute stretch break at work. Walk the dog. Clean a closet. Wash a window. Go up and down your stairs 4 times for no reason. Dance in the kitchen to a favourite song.

    10 minutes, 3 or 4 times a day. It doesn't have to be the same thing 4 times, mix it up a bit.

    SE's today - everyone has fatigue big time. 80% have hot flashes and night sweats. We all have creaky joints and aches. We have all 'hit the wall' at least once a week.

    Something important I learned today. When a friend calls to say I'm like you, they found precancerous cells on my forehead, do not mentally put that down. No it isn't breast cancer, yes, it can be cured by a cream but... he heard the word cancer and called me. because he knew I would get it. It took the girls in the group to help me understand that. Sorry if I sound shallow.

    OK, that's it for this week. Take it how you like, but I'd like to see more exercising. Has anyone started or continued on this journey of walk your way to better health? Lol

    Have a lovely evening. 

    Deb


  • levassel
    levassel Member Posts: 267
    edited May 2014

    Deb....that is great information. I certainly appreciate you passing it along.  I don't exercise much.  But I did go hit a bucket of balls at the driving range today....and then played 9 holes.  I walked.  Felt great....except for the darned blister I got! 

    Does anyone find that the joints that ache are ones you've previously injured?  

    Laurie

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Laurie that's super. At least 2 or 3 hours racked up today. I only did one, so you are way ahead. Good for you.

    I haven't injured anything much. My back, my knees, my elbow. But now that you mention it, hmmmm. I'll ask next week

  • levassel
    levassel Member Posts: 267
    edited May 2014

    For example I sprained my thumb....didn't bother me for a year.  Then tamox....sore thumb again.  Coincidence?  

    Laurie

  • stage1
    stage1 Member Posts: 475
    edited May 2014

    Laurie, yes, I injured my knee 12 years ago, that bothered me for a couple years at the time.  Now, I had been on Anostrozole for 2 1/2 years had such SEs I switched to tamox and now my knee pain is back with a vengeance.  Bone scan showed arthritis in that knee and multiple areas in my vertabre, where I never expected arthritis at age 65.  My mother at 93 does not have arthritis!  So, yes, I do think the previous problem areas are aggravated by these drugs.  Thanks for bringing that up, makes me feel I am not nuts;)

  • DawnCT
    DawnCT Member Posts: 143
    edited May 2014

    Thanks Deb!   I can really relate with that "cancer on the forehead" situation.   I had that with my MIL.  I thought " you can't really be considering that a curable basal cell skin lesion is comparable to Breast cancer!".  That's good advice they gave you. 

    Also - I have been doing 10,000 steps a day since I started my Tamoxifen on Feb 23rd.  It is helping me to feel more energetic,  I think.   I saw my Oncologist yesterday and I have lost 10lbs in 3 months.   He was so happy!   

    Keep plugging away at the walking.   It gets easier.  

    You said that you have joint pain.   Did you see the article about vitamin D as treatment for joint pain? When I was first diagnosed my vitamin D was tested at 25 which is low.   I have been taking a supplement and it is now 37.  So,  the supplements work. I am not currently having any joint pain. 

  • sloyd66
    sloyd66 Member Posts: 202
    edited May 2014


    Hi Ladies,

    I haven't been on board in a few, so i'm trying to read and catch up. It's almost 3 months since I've been on Tamox, so far so good, other then the hot flashes. No cramping of muscles or joints, maybe cause i go to gym and work out, or at least walk that treadmill. But I'm reading about the pinching pain in the breast. I get it on the surgery breast, which is around the scar tissue, is this normal? =/ I go for my 6 month mammogram june 4 then see Onc and Rad dr's on the 26th.

  • Cari3047
    Cari3047 Member Posts: 25
    edited May 2014

    Hi

    I'm new to this board.  Have only been taking Tamoxifen for about a week.  I will go back and read through the thread as soon as I have time, but my biggest complaint as far as the drug goes is that it's killing my sex drive and I feel like a tired old woman all of a sudden.  My MO said I have a 20% reoccurrence chance and the Tamo will cut that in half.  I'm not sure that is worth not wanting or enjoying sex anymore and feeling like this....   I exercise and eat right and am very healthy, but my desire is just gone.  

  • Kruise
    Kruise Member Posts: 330
    edited May 2014

    hi to all the new ladies - great to have you here and commenting on your issues etc.

    Deb I am absolutely loving your posts from your Group. I am still trying to walk more and eat better. I have the diet stuff sorted but my days seem to get away on me without always getting the walks in. Then the other night I took my daughter to her soccer game which was a late one - starting at 8.10pm so I took a jacket and started walking round the outside of the field (lucky it had a nice footpath around it and lights). I walked for an hour watching the game as I went round and round. The other spectators must have thought I was crazy!! But I didn't really care - I was walking for my own health and reasons. However my daughter was not impressed after the game she told me that I wasn't even watching her!! Grrrr can't win!! But yay - I fitted in a walk. Just need to do it more.

    Cari I so hear what you are saying about sex drive etc. I actually think with me it has been the whole chemo - sending me into menopause thing - hot flushes etc - so don't really see a magic light at the end of the tunnel.  PM me if you want as I am happy to chat with you more about this.

    Onto another subject - and Corky touched on it - reflux! Honestly I think my esophagus is burning or disintegrating it's so bad!! Is anyone else finding their digestion mucked up. I think lack of estrogen is affecting this too. 

    Love to all x

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Hi ladies. I will ask about previous injuries, lack of serial drive and reflux next week. Thank you for the suggestions.  

    Cari, tamoxifen's job is to kill estrogen. Which, unfortunately, is a big part of what gives us our Sex drive! If you find yourself mentally balancing your checkbook or worse reading a book during sex it's time to ask your doc for help. There is stuff out there. My doc gave me a recommendation which I can only buy at the (blush) Stag Shop. I'm sure you have the equivalent near you. Ask - don't be shy. You aren't alone. Hugs'n'kisses 

    Deb

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Serial drive???? Are you kidding me. Damn spell check. Sexual drive is what I was going for there.


  • Kruise
    Kruise Member Posts: 330
    edited May 2014

    I laughed at that serial bit Deb when I first read it - knew it was a typo tho!! Funny!! But serially....

  • RedReading
    RedReading Member Posts: 2,143
    edited May 2014

    Okay Kruise you actually did have me laughing out loud. 

  • Andimom03
    Andimom03 Member Posts: 162
    edited May 2014

    So I am new to this post, but NOT new to Tamoxifen.  I have been on it for 2 years, (after a bi-lateral, chemo, and radiation) and have some minor issues.  Overall, I am doing well.  New boobs are settled in nicely, tattoos done and all that.  And I have been walking this journey with a couple of friends who are in the middle of treatments, etc.  I always feel comfortable speaking my mind here and don't think I will offend anyone, but there is no other place to say certain things since most people don't understand! I have not read all the posts, so I may be repeating what some of you have said...does anyone else miss having a sex drive?  Does anyone who had a bi-lateral miss having breasts that feel and respond?  Because I do!  I have a wonderful patient husband, and I just have no interest in sex.  And it is painful.  I have started a vaginal cream after trying 2 others that irritated me.  Now I am using Estrace with my doc's approval, but haven't tried anything since using it so I don't know how things will go.  

  • sloyd66
    sloyd66 Member Posts: 202
    edited May 2014


    I been on tamox for almost 3 months now, and my sex drive seems fine. I still have a desire to have sex, I sure hope it stays for the next five yrs. I have an active mate, and although he's caring, understanding all that, I still need to be able to handle my business in the bedroom. =) So when I feel it's getting low I will find some solutions real quick.

  • corky60
    corky60 Member Posts: 726
    edited May 2014

    Kruise, awhile back I started a thread on reflux and tamoxifen but there weren't many responses.  But searching the keywords brings up quite a few.  My reflux is "silent", with dry throat, sore throat, and cough.  I am taking Prilosec for six weeks and if the problem comes back after treatment then my PCP wants to send me to a gastroenterologist for an endoscopy.  There are also foods that should be avoided and some that should be eaten.  Avoid carbonated drinks, caffeine, citrus and chocolate to start.  And many bottled beverages are actually quite acidic.  Oatmeal and banana are good to eat. 

    I suspect the tamoxifen because it reminds me of a non-enteric coated aspirin, the type that is really unkind to the stomach in sensitive people.  When I used to take aspirin I always took the enteric-coated kind.

  • Kruise
    Kruise Member Posts: 330
    edited May 2014

    thanks for that info Corky. I have just gone on a strict diet for past 10 days now and have eliminated a lot of those things. I had a endoscopy procedure a few years ago and doc told me I had bile refluxing up into my stomach and then up into my esophagus. So lots of the anti acid type drugs wouldn't work. It cleared up though back then but he did tell me that hormones would play a part and it would change again once I hit menopause. He didn't tell me for the worse tho!! Lol. And now I have been sent through menopause early with the chemo last year.

    Andimom a few of us are suffering from the low sex drive thing. Sloyd are you going through menopause at all or not or getting menopause symptons? You are lucky you still feel ok :-) I know some women are fine and others it effects very much. I think I am in the later 😢

    My partner Tim is 11 years younger than me and before all this we had a great sex life. Now I kind of feel as if I never had sex again it would be too soon. Lol. Though I know that he wouldn't be happy about that. I hope that as time goes on I will start to work out what helps and also feel better about myself. I think I feel very much like an old lady now and he is still a young guy in his prime! We have been together 5 years and we love each other very much. I feel like I waited all my life to meet him and we always laughed together, had fun together and enjoyed life. So it's all of that which has suffered. If anyone has any great ideas on how to "fix" everything - let us all know :-)

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