Bone Density (Dexa) Results

jazzy1

Received a call from my oncologist office today that my density results showed some "thinning".  Not quite sure the specifics as the RN will send the report to me, but doc did recommend starting on Actonel prescription.  

I'm of a fairly small stature, 5'2", 105 lbs and do try to include lots of weight-bearing exercises, plus vit D and a few other supplements.  Had my first density scan done prior to start of treatments in '09, which showed some thinning of neck of hip, then 2 years later NORMAL.  Now today, this is the results and wondering if anyone has taken Actonel or another prescriptions with good results down the road.  Presently on no meds and would rather run fast to avoid any, so coming to you all for some good experience and advice.

I've changed my diet, as do follow a lot of the Paleo eating and have changed a few of my supplements, one which was good for bones...hum????

Appreciate any thoughts or suggestions as value everyone's opinions....

Hugs,

Jan

nancibee

Osteopenia

I had a bone density in my early 50's because I have a family history of osteoporosis. Results were osteopenia, precursor. My sister had taken Fosomax and started to have jawbone problems so they put me on Evista. Evista is like artificial hormone replacement therapy but supposedly without the side effects of cancer. In fact, studies have shown that it actually reduces the risk of invasive breast cancer and possibly endometrial cancer. The only side effect is the possibility of blood clots.

Even though, the drug has been shown to reduce the risk of cancer, I became paranoid about all of the drugs I was taking and even though UPSC is not related to hormones, I decided to stop taking it after 8 years. It is an irrational fear but it is real for me. So I risk osteoporosis. I am afraid to get a new bone density because I really don't want to know if the results show worsening. I hope hiking 15 miles carrying a backpack will do good things for my bones.

I also own a walkvest - walkvest.com where you can add weights to the vest. I also have a DVD called Skeletal Fitness with gentle exercises. Can you tell thea i was obsessed with osteoporosis? My grandmother and now my mother became bent over and my mother requires a walker.

Nancy

jazzy1

nancibee said:

Osteopenia

I had a bone density in my early 50's because I have a family history of osteoporosis. Results were osteopenia, precursor. My sister had taken Fosomax and started to have jawbone problems so they put me on Evista. Evista is like artificial hormone replacement therapy but supposedly without the side effects of cancer. In fact, studies have shown that it actually reduces the risk of invasive breast cancer and possibly endometrial cancer. The only side effect is the possibility of blood clots.

Even though, the drug has been shown to reduce the risk of cancer, I became paranoid about all of the drugs I was taking and even though UPSC is not related to hormones, I decided to stop taking it after 8 years. It is an irrational fear but it is real for me. So I risk osteoporosis. I am afraid to get a new bone density because I really don't want to know if the results show worsening. I hope hiking 15 miles carrying a backpack will do good things for my bones.

I also own a walkvest - walkvest.com where you can add weights to the vest. I also have a DVD called Skeletal Fitness with gentle exercises. Can you tell thea i was obsessed with osteoporosis? My grandmother and now my mother became bent over and my mother requires a walker.

Nancy

Nancy

Oh my well you've sure had this osteopenia hit you.  Mine didn't show any of that, according to the RN, as to why I asked for a copy to be mailed.  I'm much better when I can read it and decifer on my own and call back if have questions.  

I avoid anything which has potential to add hormones to us, as my cancer is driven by the hormones, so don't go there ever.  Even watching the foods to be organic with no hormones added to the animals.  

Think you did the right thing stopped the Evista, but we all need to do something to keep our density up and strong.   One way is with the exercise, but try for anything associated with "weight bearing" type exercising.  Thinking that's good with walking, etc.  I was a huge runner prior to diagnosis, but just gave it up a little at a time as just didn't have the energy, then had the lower back issues with bulging disk and got scared it would jolt me to more back issues.  Today NO RUNNING!!!  Love-love the fst walking and thought it would help with the density, but apparently more to it then I was thinking.

Problems with the meds for this stuff, they might show our bones on scans to be good, but they can be brittle and cause other health issues.  Do have some great feedback from a friend on supplements to try, so I'm going that route at this point in time.  Plus, hubbie will start more intense weight exercises.

Plse don't put your head in the sand about the density scan....get one and work on other ways to increase your density if it's not great.  Surely don't want to be like those little old ladies walking out there bent over do you?  Gosh that's a real scare to me and since I'm only 5'2", I'd be well under 5' tall...and heck hubbie is 6'2".  What a sight we'd be to others.

Thanks for your response and keep up the backpacking and walking...it all helps!!

Jani 

susangr

jazzy1 said:

Nancy

Oh my well you've sure had this osteopenia hit you.  Mine didn't show any of that, according to the RN, as to why I asked for a copy to be mailed.  I'm much better when I can read it and decifer on my own and call back if have questions.  

I avoid anything which has potential to add hormones to us, as my cancer is driven by the hormones, so don't go there ever.  Even watching the foods to be organic with no hormones added to the animals.  

Think you did the right thing stopped the Evista, but we all need to do something to keep our density up and strong.   One way is with the exercise, but try for anything associated with "weight bearing" type exercising.  Thinking that's good with walking, etc.  I was a huge runner prior to diagnosis, but just gave it up a little at a time as just didn't have the energy, then had the lower back issues with bulging disk and got scared it would jolt me to more back issues.  Today NO RUNNING!!!  Love-love the fst walking and thought it would help with the density, but apparently more to it then I was thinking.

Problems with the meds for this stuff, they might show our bones on scans to be good, but they can be brittle and cause other health issues.  Do have some great feedback from a friend on supplements to try, so I'm going that route at this point in time.  Plus, hubbie will start more intense weight exercises.

Plse don't put your head in the sand about the density scan....get one and work on other ways to increase your density if it's not great.  Surely don't want to be like those little old ladies walking out there bent over do you?  Gosh that's a real scare to me and since I'm only 5'2", I'd be well under 5' tall...and heck hubbie is 6'2".  What a sight we'd be to others.

Thanks for your response and keep up the backpacking and walking...it all helps!!

Jani 

Complicated.....

I have osteopenia too which is suppose to worsen more quickly if you have had pelvic radiation which I have had. I think you have to look at all this in relation to your age too. The first 5-8 years post menopause women lose more bone mass and then should slow down. The weight bearing exercises, calcium replacements with vitamin D and a diet with plenty of calcium all are suppose to help.  With Calcium it is better to take it in divided doses.  Calcium carbonate should betaken with food and Calcium Citrate can be taken on an empty stomach.

The problem I have with the Biphosphonates like Fosamax is not only do they cause necrosis of the jaw bone making for serious dental health problems but there is also concerns related to spontaneous fracture of the femur about one year out...for no reason at all.   Had a consult with an Endocronologist at MD Anderson and the decision for me right now is to wait and monitor.   

Let us know what additional strategies you are using.  I agree it is important to get the bone density test and follow ups  so you have a baseline and a sense of how things you are doing are working.  Susan

nancibee

Evista

Thanks for thinking that I will be a little old lady someday. Being only 5 months out of UPSC treatment, I am still having a hard time believing that. Yesterday. our local funeral home sent out mailers to me and my friends stressing the importance of planning. My friends without cancer who received the mailer just thought they targeted older folks. I told them maybe the home knew something about my prognosis that I didn't.

Just an FYI, Evista is not a hormone. It behaves like one in terms of helping bone density but actually blocks cancer in the breast and endometrium. Behaves the opposite. It appears to be approved by the FDA to market to reduce the risk of invasive breast cancer. 

When I had my bone scan, the technician told me it was a good thing I had come in. I told her that no doctor had ever suggested that I have a bone scan even with my family history and that I had to ask for it. She told me that in her experience most male doctors don't. So anyone reading this board should be proactive. I see they offer them free at lots of places like shopping malls. It takes 15 minutes and is totally painless. The technician gave me a copy of my results on the spot.

Keep walking. I will be out at Napa and Pt. Reyes National Shoreline this weekend doing 26 miles.

txtrisha55

Jan,
Sorry to hear the news

Jan,

Sorry to hear the news but I know that you will keep researching till you find the ansewr.  My regular dr gives me bone scan every eyar and so far the only thing that show up is on my right knee.  Howver when I had the radiation bone scan in January they said the bones in my feet and ankles showed some loss too.  I think a lot of this has affected to because before this I had no pain in my feet now it seems everyday I come home from work and my feet are hurting me.  I just have to get my head back on straight to say it does not hurt and get over it.  It is so weird how things affect us once we know about.  Wishing you all the best. trish

jazzy1

susangr said:

Complicated.....

I have osteopenia too which is suppose to worsen more quickly if you have had pelvic radiation which I have had. I think you have to look at all this in relation to your age too. The first 5-8 years post menopause women lose more bone mass and then should slow down. The weight bearing exercises, calcium replacements with vitamin D and a diet with plenty of calcium all are suppose to help.  With Calcium it is better to take it in divided doses.  Calcium carbonate should betaken with food and Calcium Citrate can be taken on an empty stomach.

The problem I have with the Biphosphonates like Fosamax is not only do they cause necrosis of the jaw bone making for serious dental health problems but there is also concerns related to spontaneous fracture of the femur about one year out...for no reason at all.   Had a consult with an Endocronologist at MD Anderson and the decision for me right now is to wait and monitor.   

Let us know what additional strategies you are using.  I agree it is important to get the bone density test and follow ups  so you have a baseline and a sense of how things you are doing are working.  Susan

Susan

Well as of now no osteopenia for me and be grateful it's not osteoporosis is all I can say.  You've got it correctly, pelvic radiation is the big deal which simply dries up everything -- bones, muscles, ligaments, joints, etc.  I knew this right after the treatments as had the back pains starting then diagosed with bulging disk.  All docs have told me this whether my chiropractor or radiologist, as to why we have to be PROACTIVE!!!  

The RN who called and gave me the results, suggesting per the oncologist start on the Actonel, even warned of the side affects -- necrosis of the jaw bone.  Her comment "oh but it's LONG TERM, so not to worry now.  Okay we'll you take it as I'm not gonna.  Dental issues, oh well then that's another area to worry next....nope not this girl!!

I'm going to start with a few different supplements with Vits D and K and one called Pure Encapsulations Calcium MCHA with magnesium.  Not cheap but the alternative of bone loss is much worse and expensive with more health issues down the road..  

I do get some updates via newsletters and below is what was in my inbox today -- interesting!  Weight-bearing is huge, as hubbie has been pounding on my head for years.  Note, one doesn't h ave to join a gym, as much of this can be done at home via cans of foods, or purchse of some free weights at Walmart.  Lucky for us we have a whole gym with free weights in our basement as hubbie owned a few gyms many eons ago.  

http://www.naturalnews.com/010528_bone_density_mineral.html

Few points think worthy of repeating from the link above  --

Physical impact and weight-bearing exercise stimulates bone formation. Just as a muscle gets stronger and bigger the more you use it, a bone becomes stronger and denser when you regularly place demands upon it. The best bone builders are exercises that put force on the bone, such as weight-bearing activities like running and resistance exercises like strength training. In general, the greater the impact involved in an activity, the more it strengthens the bones. That's why the bones in the racket arms of tennis players are denser than the bones in their nondominant arms. When muscles and gravity aren't pulling on the bone, humans can lose bone mass rapidly. This is dramatically illustrated when people are forced by injury or ill health to undergo complete bed rest and, as a result, lose about 1 percent of their bone mass per week. This is similar to the devastating effects on bone mass seen in young, healthy male astronauts in outer space, due to the loss of gravity.

Exercise for Skeletal Health. Weight-bearing exercises are very important to help avoid osteoporosis. Weight lifting, including curls and bench presses, is a beneficial activity. Women should not resist going to gyms as they age. But even if you don't go to a gym, you can still profit from taking a little one-pound weight and curling it throughout the day. In fact, you can take a five-minute break every hour to do exercises. Dancing, stair-climbing, and brisk walking are all weight-bearing exercises, which promote mechanical stress in the skeletal system, contributing to the placement of calcium in the bones. Aerobic exercises such as biking, rowing, and swimming do not strengthen the bones. 

Not only is weight training safe, it is important for preventing osteoporosis. As muscles are pulled directly against the bone, with gravity working against it, calcium is driven back into the bones. It also stimulates the manufacture of new bone. This adds up to a decrease in the effects of osteoporosis by 50—80 percent. Women need to do weight training two to three times per week for fifteen to thirty minutes. All the different muscle groups should be worked on. Twenty-four hours should lapse between sessions to rest muscles. For best results, an exercise program should be started long before the onset of menopause. 

Walking may be the best all-around exercise, but as far as bone building goes, strength training is the cream of the crop. The pull of muscle against bone stresses a bone, and that kind of stress is what makes a bone become stronger. Impact also strengthens a bone, but the impact that comes from running or jumping, say, can be otherwise harmful to the body. Muscle working against gravity provides another kind of impact for the bones, stimulating bone formation and slowing loss. Strength training with free weights (including light hand and ankle weights) or weight machines is the most direct way to provide that stress and impact of muscle on bone, which is what makes it ideal for building and preserving bone density.

jazzy1

nancibee said:

Evista

Thanks for thinking that I will be a little old lady someday. Being only 5 months out of UPSC treatment, I am still having a hard time believing that. Yesterday. our local funeral home sent out mailers to me and my friends stressing the importance of planning. My friends without cancer who received the mailer just thought they targeted older folks. I told them maybe the home knew something about my prognosis that I didn't.

Just an FYI, Evista is not a hormone. It behaves like one in terms of helping bone density but actually blocks cancer in the breast and endometrium. Behaves the opposite. It appears to be approved by the FDA to market to reduce the risk of invasive breast cancer. 

When I had my bone scan, the technician told me it was a good thing I had come in. I told her that no doctor had ever suggested that I have a bone scan even with my family history and that I had to ask for it. She told me that in her experience most male doctors don't. So anyone reading this board should be proactive. I see they offer them free at lots of places like shopping malls. It takes 15 minutes and is totally painless. The technician gave me a copy of my results on the spot.

Keep walking. I will be out at Napa and Pt. Reyes National Shoreline this weekend doing 26 miles.

Nancy

Oh I hope you didn't think I was really jabbing at your with old lady stuff...more like I'm worried about all of us.  Last thing I want to become, slumped over with purple hair...lol!!  Gotta laugh, but tell you it jumps me to move.  

Funny you should mention about no doc suggested bone dexa even with your family history.  You know in the scheme of all of our health care, it comes down to us being the proactive ones to ask questions or suggest.  I was one who knew this was my 2 year time for the scan and asked my oncolgist to have it setup.  Don't see my GYN as he basically does same follow-ups as the ONCOLOGIST..why double dip, especially with my huge deductible and I pay for everything now.  

Now you've got down the walking...wow 26 miles...YOU GO GIRL!!  How long does that take?  Mountainous conditions or flat?  

Hugs,

Jan

 

 

jazzy1

txtrisha55 said:

Jan,
Sorry to hear the news

Jan,

Sorry to hear the news but I know that you will keep researching till you find the ansewr.  My regular dr gives me bone scan every eyar and so far the only thing that show up is on my right knee.  Howver when I had the radiation bone scan in January they said the bones in my feet and ankles showed some loss too.  I think a lot of this has affected to because before this I had no pain in my feet now it seems everyday I come home from work and my feet are hurting me.  I just have to get my head back on straight to say it does not hurt and get over it.  It is so weird how things affect us once we know about.  Wishing you all the best. trish

Trish

We're both with the MMMT and thinking you've got stage 3C too?  Right knee issues, well per hubbie and all his knee issues I can believe it.  Those joints are really challenged just walking around during our general lives.  Then add on arthritis as we start with that in our 40's then add on genetics and more...on and on....

Hang in there, as getting old can be real challenging can't it??

 

Hugs

Jan

 

ConnieSW

txtrisha55 said:

Jan,
Sorry to hear the news

Jan,

Sorry to hear the news but I know that you will keep researching till you find the ansewr.  My regular dr gives me bone scan every eyar and so far the only thing that show up is on my right knee.  Howver when I had the radiation bone scan in January they said the bones in my feet and ankles showed some loss too.  I think a lot of this has affected to because before this I had no pain in my feet now it seems everyday I come home from work and my feet are hurting me.  I just have to get my head back on straight to say it does not hurt and get over it.  It is so weird how things affect us once we know about.  Wishing you all the best. trish

Trish

You made me chuckle.  I knew I have arthritis in my knees but when I had my post treatment scan, it was noted in a bunch of places that don't bother me YET.  S o , I guess that's something else to look forward to.

nancibee

jazzy1 said:

Nancy

Oh I hope you didn't think I was really jabbing at your with old lady stuff...more like I'm worried about all of us.  Last thing I want to become, slumped over with purple hair...lol!!  Gotta laugh, but tell you it jumps me to move.  

Funny you should mention about no doc suggested bone dexa even with your family history.  You know in the scheme of all of our health care, it comes down to us being the proactive ones to ask questions or suggest.  I was one who knew this was my 2 year time for the scan and asked my oncolgist to have it setup.  Don't see my GYN as he basically does same follow-ups as the ONCOLOGIST..why double dip, especially with my huge deductible and I pay for everything now.  

Now you've got down the walking...wow 26 miles...YOU GO GIRL!!  How long does that take?  Mountainous conditions or flat?  

Hugs,

Jan

 

 

Little Old Lady

See I do want to be a red hat lady. The say they are old and just don't care. They wear matador and geisha costumes in public. Maybe it is living so close to San Francisco where we are known to all be slightly crazy.

I hike and I used to do extreme hiking. I am not the fastest one in the group but I can keep up. Before my surgery, I had gotten up to 5,000 feet elevation gain (cumulative) and 19 miles. I had hiked Cloud's Rest in Yosemite and was setting my sights on Mt. Whitney. Then cancer and hysterectomy. Now I don't do as strenuous. I go all over the Bay area with meetup.com hiking groups. Very diverse, young folks and old folks and from all over the world. Sometimes we go out to dinner afterwards. This weekend I will hike close to Napa (12 mi. 2,400 ft) and Sunday will be a more relaxing hike. Pt. Reyes is a national beach treasure and we are going to do 14 mi/1,000 fr. The hikes take about 5-7 hours. Seriously, I am an evangelist for meetup.com. I've spoken to so many folks who were in bad situations - health, financial and relationships. Meetup is free and it gets you out of the house, being with people and not moping. I've signed up for some Spanish Conversation groups to go see some films and to an event to walk and chat. There are groups for music aficianodos, dog lovers, politics, anything.

Here are some photos: http://www.meetup.com/SuperFab/photos/12806122/#198995902

 

 

txtrisha55

jazzy1 said:

Trish

We're both with the MMMT and thinking you've got stage 3C too?  Right knee issues, well per hubbie and all his knee issues I can believe it.  Those joints are really challenged just walking around during our general lives.  Then add on arthritis as we start with that in our 40's then add on genetics and more...on and on....

Hang in there, as getting old can be real challenging can't it??

 

Hugs

Jan

 

MMMT Stage 3c1

Yes we are both in the same boat.  But your drs decided to go the whole route with chemo and radiation while my dr said chemo only. Which after being on this site after treatment, I wonder why everybody does not get the same treatment for the same cancer and the same stage. Trying to figure that out would take a life time that I do not want to waste it on.  Every day is seems that I say to someone that getting old suxs but then I also say that it beats the alternative.  I have just to the place that I take every day as it comes and I do not worry to much about the future because I know that I do not have control over it.  I am trying hard to teach my daughter that to quit worrying about the small stuff and things you have no control over.  She has yet to learn it though. She is only 29 maybe by the time she is 40 she will start getting it though her head.  All the best. trish

txtrisha55

ConnieSW said:

Trish

You made me chuckle.  I knew I have arthritis in my knees but when I had my post treatment scan, it was noted in a bunch of places that don't bother me YET.  S o , I guess that's something else to look forward to.

Thanks I glad I made someone laugh today.

Every time I go to my dr I end up making her laugh because of my frank talk.  Just like when she told me they were going to remove Omentum because MMMT likes to go to fat cells, I said oh crap my whole body is a fat cell what am I going to do?  She just looked at me and had nothing to say but laughed.  I went in bald everytime without a hat, wig or scarf, she was surprised about that, when I was going through the chemo.  She said that with my positive attitude even with stage 3 MMMT, I am doing so much better than some of her other patients with less cancer stage. 

I do think it is funny that we think we are doing so good with some thing because we do not hurt, limp, or feel bad but the minute we find out that some thing is wrong, it hurts.  I think it is all in my head that is why I said that I need to get it out of my head and say it does not bother me so I can get back to my new normal.  I have started wearing my tennis shoes to work (even though our dress code says I cannot do that) and my feet do not hurt so bad at night.  I can even take the stairs down again and do it fairly quickly.  Now coming up is a different story.  I can make it up two floors but then have to stop to get my breath.  Oh well, I have to get back in the gym to get on the treadmill so I can get up the stairs better. 

As I told Jan getting old suxs but it beats the alternative. trish

pinky104

nancibee said:

Osteopenia

I had a bone density in my early 50's because I have a family history of osteoporosis. Results were osteopenia, precursor. My sister had taken Fosomax and started to have jawbone problems so they put me on Evista. Evista is like artificial hormone replacement therapy but supposedly without the side effects of cancer. In fact, studies have shown that it actually reduces the risk of invasive breast cancer and possibly endometrial cancer. The only side effect is the possibility of blood clots.

Even though, the drug has been shown to reduce the risk of cancer, I became paranoid about all of the drugs I was taking and even though UPSC is not related to hormones, I decided to stop taking it after 8 years. It is an irrational fear but it is real for me. So I risk osteoporosis. I am afraid to get a new bone density because I really don't want to know if the results show worsening. I hope hiking 15 miles carrying a backpack will do good things for my bones.

I also own a walkvest - walkvest.com where you can add weights to the vest. I also have a DVD called Skeletal Fitness with gentle exercises. Can you tell thea i was obsessed with osteoporosis? My grandmother and now my mother became bent over and my mother requires a walker.

Nancy

Evista

I started on Evista at 51 to try and prevent breast cancer, which my mother had twice in one breast and my grandmother had in both breasts.  I'm now 64, and will be 3 years out from surgery this May (UPSC stage IV) with NED since the surgery and chemo (carbo/taxol).  My mother had wicked osteoporosis (shrank from 5'4" to 4'9") which probably resulted from her undiagnosed (until her mid-eighties) celiac disease.  I've been on Evista with no apparent problems from it.  I don't have celiac disease, but have been losing bone mass slowly.  I'm not quite into the osteopenia stage yet, but I'm getting close.  I have to wonder where I'd be if I hadn't taken it.  I don't exercise much.  I walk for a half hour to 45 minutes occasionally. I'll probably be doing a bit better when it warms up, but for now, when it's in the 20's and 30's here, I don't want to go outside. I'm out in the country, not close enough to a mall to drive there every day to exercise. 

I wish you luck--your walking should help a lot.  And maybe you should get tested (if you haven't already) to make sure you don't have celiac disease since you had two relatives with osteoporosis.  It's especially prevalent in people with European backgrounds (such as the Irish), I understand.  But people from all countries can get it.