Osteopenic question

Options
katiejm
katiejm Member Posts: 6

Anyone in this forum been diagnosed as moderately osteopenic? (which I understand is not quite the same as osteoporosis- just means you're not there yet?) How did the diagnosis affect which hormonal therapy your oncologist prescribed? My onc wants to use Femara as first line rather than Tamoxifen, but I'm wondering if my latest BMD (bone mineral density) results will affect her decision. Results weren't horrible but not the greatest either. Sheesh- it was really hard to make sense of the report- good thing I had a baseline BMD done 8 years ago!

Comments

  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    I too am dx'd with osteopenia (at 45) and it's considered moderate along with arthritis. I am taking Arimidex as my oncologist thinks (hope he "knows") that I am in permanent menopause and he put me on 70mg of Fosamax that I take once a week to help build bone and instructed me to do weight bearing exercise.
    Hope this helps...the Fosamax is supposed to work really well...don't know much about side effects except that you can't lay down for at least a half an hour after taking it as it can cause indigestion. I seem to be "achey" all over for a couple of days but I'm achey anyway so I don't know if that has anything to do with Fosamax or not.
    Hugs and all the best to you
    Vickie
  • katiejm
    katiejm Member Posts: 6
    edited November 2006

    Thanks, Vickie. My chiropractor is recommending something call Cal Apatite Plus from the Metagenics line of supplements. My physician wants to put me on something called Actonel. I asked about Fosomax and she didn't think it was necessary for me to go that way but I'm intending on asking my onc, since the Femara is her recommendation for first line hormonal for me. I'd really rather not go with Tamoxifen. Achey? I can identify with that!

  • Chelee
    Chelee Member Posts: 513
    edited November 2006
    This is a BIG concern of mine too. I had my first dexa scan which comes back indicating I am osteopenic. It does NOT say borderline, moderate...nothing like that though?

    But it does say "the total hips are 78% of young normal or 1.8 standard deviations BELOW normal. Goes on to say this indicates osteopenia by WHO criteria. It says this indicates a doubling of HIP fracture. (I'm 49 so this really worries me.)

    The Femara WAS mentioned on the report as a big RISK factor in this. It DOES recommend calcium, vitamin D, & addition of a bisphosphonate.

    My oncologist did NOT seem to care which scares me. I asked her straight out if I should start on something? She said the calicum and vitamin D is enough for now. I read taking calium and vitamin D at my age AFTER the fact...meaning bones already damaged won't make any difference. But she doesn't care. So I am in the middle of changing doctors and can't wait to see what my NEW onc will say about this.

    I would like to know how much taking femara REALLY keeps a recurrance away. I HATE taking this femara...its killing me. I hurt every where since starting it.

    I have read that Tamoxifen is better on the bones...not near as bad as the AI's. Although there are side affects to tamoxifen too. (We can't win it seems.)

    But all I can say as when it comes to MY onc...being osteopenic made NO difference in HER choice of hormonal therapy for me.

    Chelee
  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    Chelee...your oncologist surprises me...my oncologist put me on the Fosamax as quick as my results came back. I believe that the Fosamax is supposed to rebuild bone mass and he told me to do the weight bearing exercises to build bone strenght...might want to bring that up to your new oncologist. I don't seem to be having problems taking the Fosamax other than being achey which I said before and that may just be from surgery, rads, Arimidex...who knows for sure.
    Good luck to you.
    Hugs
    Vickie
  • DragonladyTina
    DragonladyTina Member Posts: 371
    edited November 2006
    I don't want to sound totally dense but can you elaborate on weight bearing exercises please. I am taking Arimidex for just about 1 month now after a year and a half of Tamoxifen. I take calcium, vit D and magnesium and I am going for a Bone density test in a week or so.
    I hope it's not true that starting with those supplements is useless after the fact.

    Thanks and best wishes, Tina
  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    Hi Tina...you don't sound totally dense at all...I wasn't sure what he wanted me to do either until I asked. He said that I could get the ankle weights and use them when walking and do leg lifts with them. Also using the wrist weights when doing housework or yoga...which I love to do but have been slacking off lately. I think it builds up the muscles around your bones so that there is more to support the weakness in your bones if that makes any sense. I was warned to be very careful of any falls so I am a bit spooked about the whole thing...mine is worse on the right side for some weird reason and I worry...can you imagine a broken hip at 45!?!
    I don't think the supplement are useless either...he hasn't recommended supplements but we got off track and I didn't ask so I intend to at my next visit.
    Best wishes to you too
    Hugs
    Vickie
  • Chelee
    Chelee Member Posts: 513
    edited November 2006
    Tina, I was looking up stuff on google due to my Dexa scan report which said I should at the least start on calium and vitamin D. Even my oncologist said to start on that.

    But I ran across two reputable websites that stated taking that now is of no help. That is something I wanted to ask my oncologist about. I find it hard to believe. I am sure it can't possible reverse the damage...but I would LIKE to think it at least prevents some. It certainly can't hurt. I know I ran out and got some "Caltrate" right anyway. It has the calicum and vitamin D & other good stuff in it. But it sure took the wind out of my sails when I read that. I am hoping what it really means is it won't change what is...but there has to still be some benefit? Lets all ask our onc doc's and see what they say.

    Chelee
  • Chelee
    Chelee Member Posts: 513
    edited November 2006
    Vickie, I keep hearing about others on that Fosamax as you mentioned. Thats what I THOUGHT my onc would start me on to prevent further damage since it says I am at a DOUBLE risk of hip fractures. That scares me to death. Thats ALL I need right now. She hasn't mentioned putting me on anything. But I should be starting with a NEW onc SOON. (I better be...they PROMISED ME)

    I too want to know about these weight bearing exercises I keep hearing about on the boards. My onc never tells me anything. I don't know which ones I should be doing? But I want to do anything I can to help my bones at this point.

    Chelee
  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    Chelee...my next appt. is December 6 and we have a physical therapy workshop for stroke victims where I work aso I will talk to them next week (they are students at Ithaca College and very good). I will let you know what hey say and figure out a plan.
    Hugs all...we are stronger than we think we are.
    Vickie
  • roseg
    roseg Member Posts: 3,133
    edited November 2006
    Swimming and biking are not good weight bearing exercises.

    I've never heard of doing Yoga with weights.
  • fancy2
    fancy2 Member Posts: 162
    edited November 2006
    Quote:

    I too want to know about these weight bearing exercises I keep hearing about on the boards. My onc never tells me anything. I don't know which ones I should be doing? But I want to do anything I can to help my bones at this point.




    Hi, ladies. I am NOT osteopenic, but I take Femara and Fosamax. I have taken them together since I was diagnosed with breast cancer. In addition, my onc prescribed 1,500mg of calcium, 750mg of magnesium and 1,000iu of vitamin D. It is VERY important to take both the calcium and magnesium. Your bones won't take up calcium without magnesium. This is where the reports that "calcium doesn't increase bone mass after 35" come from--they didn't give the right set of supplements. I split my dose of cal/mag into 3 and take them with each meal.

    Be careful with taking supplements in "groups" like calcium, magnesium, zinc, copper, boron..... You CAN get too much of some of these (copper, f'rinstance) and that would not be good.

    And oh yes, don't take boron if you're er+. It increases your estrogen, which is what Femara is supposed to prevent.

    As far as asking your onc, well, you can ask but it probably won't do you any good. Most oncs don't know a thing about supplements, and are way too busy to try to find out. That's why I go to Cancer Treatment Centers of America. My onc knows my naturopath--they actually sit and discuss stuff!

    Hope this helps somebody. Feel free to ask questions. I'm not Edge, but I'll be happy to share what little I know.
  • fancy2
    fancy2 Member Posts: 162
    edited November 2006

    I forgot--weight bearing exercises are exercises where you stress your skeletal system. Walking is the very best. if you walk for 30 minutes a day 3-4x/week, you have helped your bones take up the calcium. Without stress, your bones won't absorb calcium, no matter HOW much you take. You could also dance, if you actually DANCED for 30 minutes, or jog, or run. Walking is probably easiest, tho. And yes, if you 1)exercise, 2)take calcium and 3)take magnesium, you CAN improve your bone density.

  • ginger2345
    ginger2345 Member Posts: 517
    edited November 2006
    I have osteopenia and the WHO recommendation is calcium and vitamin d. That's probably what any woman should take post menopause as osteoporosis is so prevalent. Then with my family history of osteoporsis and personal history of bc, I was given the option of taking a bisphosphonate and I took it. Actonel and Fosamax and Boniva are all bisphosphonates.

    If you walk a lot at work, you're doing weight bearing exercise and that counts. Swimming does provide resistance exercise, but mostly in the upper body. If we break a wrist or arm we're laid up for a while. If we break a leg or a hip, for the older folks it can be the beginning of the end. So it's important to walk.

    I'd be careful about adding weights to my wrists or ankles as this can cause problems in our arms and legs and even our backs.
  • katiejm
    katiejm Member Posts: 6
    edited November 2006
    Fancy:
    Amazing! I KNOW my rad onc has absolutely NO INTEREST in dialoging with my ND. His assistant got all miffed, gave me what I refer to as "the look" when I told them I would be following a naturopathic radiation protocol to protect my skin. I wanted to slap her.

    At least my med onc and physician are on the same page as me. I just don't see the sense in taking all these pharmceuticals that give rise to SE's and then you're prescribed another drug to look after the SE's from the first one! Wow- what a money-making machine our pharma industry has become!

    And you are quite correct- many oncologists do very little or no research in alternatives. I'll be delivering a copy of a research study on curcumin taken during radiotherapy to my rad onc on Monday- should be interesting- I'm described as a difficult patient! Chelee- I'd be freaked too at 45!
    Love and light girls!
    p.s. check out Cal apatite for calcium supplement- they make several different kinds, some with the boron or ipriflavones (soy-like estrogen) and some without. It's what I'm on, along with a Vit D supp. Average person over 50 needs 1500 mg calcium and 800 IU Vit D daily (that's a Canadian measurement.)
  • Chelee
    Chelee Member Posts: 513
    edited November 2006
    Rose, That bums me out to hear that swimming & bike riding are NOT weight bearing excercise. Those TWO things are my FAVORITE when it comes to excercise. I appreciate that information Rose...I was hoping the biking WAS helping the bones...but I guess not. Its good for cardio..but thats it huh.


    NewVickie, That sounds good. I am sure you can find some good excercises at that class for us. I will look forward to your post. Thanks so much.


    Fancy, That is an interesting fact you mentioned. One I did NOT know. I never gave it any thought. So thats the whole point is to stress and use the bones. Which I would assume its like anything, "Use it or LOSE it". Right! Makes sense. I use to like walking but I have a bad lower back & I get *severe* spasms & pain. I was seeing a Neurologist BEFORE my bc DX for this problem. Thats why I ended up riding my bike more. Its easier on the back. I need to find some other weight bearing excercise I can do that isn't too hard on my lower back? Hopefully Vickie will find some for us. Maybe I should google it and see what I could up with.

    Chelee
  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    Just checking back in...I am now a bit confused about my oncologist recommending the weights for my ankles and wrists?!? It actually does make sense NOT to use them...especially on your wrists if you have had lymph node removal as your not supposed to lift over 15lbs (although I do...carrying groceries etc.)and I have lots of lower back problems...I will check with our physical therapy staff though and see what they say.
    (It was my oncologist who said to do the yoga, which he knows I do, with the weights...not so sure now)
    Let you know on Monday if I can.
    And...thanks for all the supplement information...he never recommended any supplements at all...will ask him about that when I go back but losing a bit of confidence in him as of late.
    Hugs
    Vickie
  • Chelee
    Chelee Member Posts: 513
    edited November 2006
    Ginger, That is a REAL concern to me also. Meaning adding weights to wrists & legs. Especially my right wrist which is the side I had the SNB. I was told NOT to do any heavy lifting with that arm...pulling or pushing. In fact I was told not to even carry anything heavier then a gallon of milk..and even then to be careful.

    I need to find something that is semi safe as breaking a hip scares me to death. My Mother HAS broken BOTH of hers within the last 13 years. Her recovery was pure he$$. She was in her 70's...so it wasn't easy. She was so lopsided after they repaired her first hip. Then years later she broke the second hip in a fall and to this day has NEVER been able to walk WITHOUT her walker. She went through a really rough time with both hips...so I DON'T want to ever experience that. Thats what scared me when my DEXA scan said I have a double increase of hip fracture. I HAVE to do something to strengthen these hips and bones. I just CAN'T understand WHY my oncologist doesn't start me on anything? Makes absolutely NO sense! The report even RECOMMENDS I be started on something right away.

    I am going to make some calls next week and see what I can find out about doing the RIGHT weight bearing excersises as this is so important for us gals.

    Chelee
  • ginger2345
    ginger2345 Member Posts: 517
    edited November 2006
    Your onc is opposed to bisphosphonates? You should ask why. Was it the onc who suggested the weights, sorry I can't remember. Do you have aPCP you could run this by; someone who knows your overall condition?

    Probably with back problems and a need for weight bearing exercise, walking is going to be the best. For people with back pain flare ups walking at a mild pace for short distances to begin with is recommended. It stretches the back muscles that help support your back. Warming up with a heating pad on the back before exercising or walking can be good to begin a bit relaxed too.
  • roseg
    roseg Member Posts: 3,133
    edited November 2006
    No offense to your oncologist, but isn't cancer his specality? I'd consult a trainer or PT about leg/wrist weights!

    They used to be the thing, but lately the fitness world has moved away from that because they can distort your natural gait. Also if you have lymphedema concerns you want to do arm weights in a gentle way, working up to more weight.
  • newvickie
    newvickie Member Posts: 3,939
    edited November 2006
    I'm back ladies but actually a bit more confused than ever. I talked with our physical therapist here at work and was told that they really couldn't tell me the best exercises to do without a full report from the doctors.

    Called my oncologist and my breast care specialist about the weights...they both told me that for ME it is recommended BUT the recommendations are different for everyone. It depends on the surgery type, LE issues, weight, many variables. They recommended I use the weights (but no more than 5 lbs) to rebuild muscle mass that I lost when I went through chemo etc. I have a lot of weakness in my arms and legs but I have back problems too so I asked about that...to make a long story short they basically said to try the ankle weights...if it bothers my back...stop! Using the weights on my wrists is ok FOR ME as long as I am not straining the muscles...just stretch until I feel a slight pull then stop...but I don't have LE issues either.

    I don't know what to think but I wanted everyone to know that they both said that everyone is different and what works for some either won't work for others or will actually make matters worse for others. I think I need to find an actual physical therapist instead of relying on my oncologist or breast specialist.
    Sorry to not be more help.
    Hugs and best to all
    Vickie
  • ginger2345
    ginger2345 Member Posts: 517
    edited November 2006
    Chelee,

    I think I'd check with my PCP, sometimes they have advice and sometimes they can refer you to the appropriate PT. PT's are not all the same and even have their own little "specialties."

    Lifting weights and walking with weights are too different activities, and lifting light weights seems reasonable to recover muscle mass if deemed appropriate by your doc. If fact, PT's will send your doc a treatment outline that the doc has to approve if there's any hope of insurance coverage.
  • fancy2
    fancy2 Member Posts: 162
    edited November 2006
    Quote:

    check out Cal apatite for calcium supplement- they make several different kinds, some with the boron or ipriflavones (soy-like estrogen) and some without. It's what I'm on, along with a Vit D supp. Average person over 50 needs 1500 mg calcium and 800 IU Vit D daily (that's a Canadian measurement.)




    But if there's no magnesium, the calcium is useless. I also have a chiro, and she also recommends stuff from Metagenics. I'm sure it's excellent, but it's about 4x more expensive than what I buy. If you can afford it, go for it. Have you looked at what Life Extension Foundation has to offer? www.lef.org Great place.
  • Rosemary44
    Rosemary44 Member Posts: 2,660
    edited November 2006
    It took awhile but I finally found out why we should take calcium at a different time then magnesium, Ca citrate slows magnesium absorption. Just when I thought I had it all down pat, then this pops up:

    http://www.magnesiumresearchlab.com/Accounting%20for%20Mg,%20Calcium%20and%20Osteoporosis.htm

    You'll have to copy and paste the full address.
  • katiejm
    katiejm Member Posts: 6
    edited December 2006
    Hi Fancy:
    Thanks for the info. I'm actually an LE member but found their shipping charges to Canada really expensive. Otherwise I would be seriously looking at their products. I've resorted to consulting with my ND on best products she recommends. I've had good experience with the Metagenics line with several different substances. The "4X more expensive" is sort of relevant to the shipping and exchange rates for buying products from the US for me; works out the same in the end!

    I ended up getting the Calapatite- Metagenics line Calcium/Magnesium- no ipriflavones. Four tablets 2X/day.

Categories