Make sure they pay attention to your bones

CheeseQueen57

Despite my bringing this issue up in the very beginning, my doctors pretty much, in their efforts to save my life, ignored the state of my bones ( which were not good before treatment) and now due to the radiation my bones are in dire straights. I’ve had an email nsufficiency fracture of my sacrum and a compression fracture of my L4 spine. They’ve both healed nicely but I’m at extreme risk for more fractures. My oncologist didn’t mention that the Megace I’m on further deteriorates my bones. As my endocrinologist said, a hip fracture could destroy my quality of life. She wants me to begin treatment. So my warning to you is make sure they care about your bones cause you could survive this wretched disease and have your life destroyed by a fracture. 

derMaus

Yikes!

Yikes! This wasn't on my radar at all, but now I'm definitely sitting up and paying attention. Thank you so much for the reminder, it's appreciated. B

MAbound

Please forgive my whine

It's like Whack-a-mole isn't it? We treat one problem only to cause another and another and another. I've been on Megace since the beginning of February and go in January for a bone density test to compare to the one I had as a baseline years ago. Trace blood was also found in my urine during pre-op testing to remove an anal polyp a week and a half ago that could just be from minor irritation from kidney stones getting started, a developing UTI (that would be a first for me), or bladder cancer because I have Lynch Syndrome and had pelvic radiation. So there's probably some more unexpected testing. And that's all on top of my annual PCP physical and check-up with gyn-onc and all of the tests that go with that! There's also the follow-up appointment with the GI surgeon to get the polyp pathology results. It just never ends, does it? It all makes it so hard to work some normalcy into ones life and it's getting to be a bit frustrating because I have so much else going on in my life to cope with. I know we all have to cope with things, but I saw Cheese's heads up about the bones and it just made me need to vent about it a little. I'll get through next month, but I hate how the anxiety builds whenever I have all of these tests and appointments coming up!!  I know it could be worse, but today it's getting to me! Thanks for letting me crab!

Jairoldi

Pelvic insufficiency

Yikes is right. My radiologist did talk to me about about pelvic insufficiency being a possible long term side effect of pelvic radiation. Before I started radiation I gave away my ice skates because I'm not very good at skating and didn't want to risk a hip fracture. I love skating with my grand children but not enough to risk a broken hip.

janaes

Boy thats true CQ.  My bones

Boy thats true CQ.  My bones are terrible. I have ostioprosis now.  It took quite a few months after treatment to get mu back feeling normal enough to do tje things i needed to do.  I had to do daily exersizes for a month or more.  I would incourage other to have there bones tested before treatment. So you will know after treatment what damage was done because of the cancer treatments.

Thanks CQ for posting this

 

oldbeauty

Osteoporosis treatment

Very timely subject.  I broke my little toe awhile back (and bc of neuropathy I didn't even feel it!) and the doctor noted the Xray showed osteoporosis in my foot.  I was shocked and asked my PCP to send me for a bone density exam.  I just got the results that shows osteoporosis in my lumbar spine and osteopenia in my hip and femur.  The report recommendation is for treatment, not just vitamins and exercise.  I haven't heard from the doctor yet and I am wondering whether any of the ladies here are receiving prescription treatment for osteoporosis and, if so, which therapy and whether they'd recommend it.  Thanks for any feedback.  Best wishes, Oldbeauty

CheeseQueen57

A little more info

I had osteopenia before treatment due to the fact that I went through menopause at age 39. Through the years I was on and off various osteoporosis treatments. In fact my Gyn had called me in November ( I was dx in January) alarmed and said I should begin osteoporosis therapy again. Despite telling this fact to my oncologist there was no recommendation to treat my bones concurrently with my cancer. I definitely raised the alarm. 

After I finished treatment in November 2016 (14 weeks of carbo/taxol, 28 weeks of pelvic/abdominal radiation, and 3 sessions of brachytherapy) in December 2016 I suffered an insufficiency fracture of the sacral alla that was attributed to the radiation and possibly the steroids I was on during chemo. i had had a dexa scan in December 2015 so insurance will not do another scan for 2 years so I just had another one and it is significantly worse. In July I also suffered a compression fracture of my spine in the L4 area. 

I have an excellent endocrinologist who is evaluating me for treatment. She is doing some tests to carefully choose which osteoporosis agent to use. The oral agents tend to cause excessive reflux problems which many of us already suffer. It’s importaant to determine if your bone is continuing to break down when choosing the right medicine. 

My advice is to get yourself to a specialist that specializes in osteoporosis treatment. It could be an endocrinologist or orthopedic person. a gynecologist may know but I have found that many pretend they know more about osteoporosis than they really do. There are definitely side effects to treatment but calcium and vitamin D and exercise are not going to solve this problem once it progresses to a certain point. And you’ve heard that a broken hip was often the beginning of the end for a person. 

I‘m kinda angry because I’ve spent half my life trying to prevent this from happening. And at 60 I’m finding myself afraid of my next fracture. Meanwhile my 84 year old mother never ate adequate calcium, never exercised in her life, was on multiple calcium depleting medications, now sits on her **** all day being waited on and never suffered a fracture in her life. Boy, life sure isn’t fair!

NoniK

oldbeauty said:

Osteoporosis treatment

Very timely subject.  I broke my little toe awhile back (and bc of neuropathy I didn't even feel it!) and the doctor noted the Xray showed osteoporosis in my foot.  I was shocked and asked my PCP to send me for a bone density exam.  I just got the results that shows osteoporosis in my lumbar spine and osteopenia in my hip and femur.  The report recommendation is for treatment, not just vitamins and exercise.  I haven't heard from the doctor yet and I am wondering whether any of the ladies here are receiving prescription treatment for osteoporosis and, if so, which therapy and whether they'd recommend it.  Thanks for any feedback.  Best wishes, Oldbeauty

Bone treatment on schedule

I was scheduled to have my first treaTrent (a shot) for osteoporosis this January. Now I will begin radiation January 2nd. So the treatment has been postponed so as not to confuse side effects from the two treatments. Has anyone else dealt with this?

Thanks for bringing this subject up. Good luck.

 

CheeseQueen57

NoniK said:

Bone treatment on schedule

I was scheduled to have my first treaTrent (a shot) for osteoporosis this January. Now I will begin radiation January 2nd. So the treatment has been postponed so as not to confuse side effects from the two treatments. Has anyone else dealt with this?

Thanks for bringing this subject up. Good luck.

 

In hindsight

I wish I would have got my osteoporosis treatment in conjunction with my cancer treatment. Maybe it would have prevented the destruction of my bones and 2 fractures. The oncologists ate only thinking of killing the cancer. They’re not so concerned about what you have to live with after treatment ends. 

MoeKay

Study on Possible Benefits of Tea Drinking on Bone Density

Hi Cheese,

I started drinking tea instead of coffee to see if it had any positive impact on my microscopic colitis.  I've been doing a little research on the potential benefits of tea, and ran across a number of articles discussing possible benefits of black tea on bone density.  I just found a recent study entitled "Updated association of tea consumption and bone mineral density, a meta-analysis."  Here's the link to the full text of the study in case you're interested:  https://www.ncbi.nlm.nih.gov/pubmed/28328853.  The study conclusion stated that the meta-analysis provided a potential trend that tea consumption might be beneficial for BMD, especially in the lumbar spine, hip, femoral neck, Ward triangle, and greater trochanter, which might help prevent bone loss.

I have a friend who's about your age and has significant bone loss, presumably due to early menopause.  She's been getting semi-annual injections for her bone density issues for a few years now, but I'm going to send her this information and suggest that she might want to do further research on tea drinking as well.

MoeKay

CheeseQueen57

MoeKay said:

Study on Possible Benefits of Tea Drinking on Bone Density

Hi Cheese,

I started drinking tea instead of coffee to see if it had any positive impact on my microscopic colitis.  I've been doing a little research on the potential benefits of tea, and ran across a number of articles discussing possible benefits of black tea on bone density.  I just found a recent study entitled "Updated association of tea consumption and bone mineral density, a meta-analysis."  Here's the link to the full text of the study in case you're interested:  https://www.ncbi.nlm.nih.gov/pubmed/28328853.  The study conclusion stated that the meta-analysis provided a potential trend that tea consumption might be beneficial for BMD, especially in the lumbar spine, hip, femoral neck, Ward triangle, and greater trochanter, which might help prevent bone loss.

I have a friend who's about your age and has significant bone loss, presumably due to early menopause.  She's been getting semi-annual injections for her bone density issues for a few years now, but I'm going to send her this information and suggest that she might want to do further research on tea drinking as well.

MoeKay

How Funny!

I recently traveled to Newfoundland for my uncle’s surprise 80th birthday and at my visit and at 60 years old I finally have taken up tea drinking (albeit with a lot of cream and sugar!). My mother, a native Newfoundlander has been a lifelong tea drinker. Maybe it’s helped her bones.

Double Whammy

And there are side effects of that treatment, too!

My PCP previously watched my bone density.  With breast cancer came an aromatase inhibitor that likes to create more havoc with bone density by leaching any potential for any estrogen.  My oncologist (breast) did recommend a bisphosphanate, but I really wasn't THAT bad, still osteopenic and only minimal osteoporosis which resolved after stopping Arimidex and switching to Tamoxifen.  I declined treatment for now.  I'm due for another bone density scan this spring.  

The side effects of bisphonates are serious and not that uncommon. Once again, it's a Catch 22 situation.  Be wise in your decision making.  I WILL take something if my bone density has declined, but my PCP said "not yet" so I'm happy to not be taking anything currently.  

Keep in mind that everything we do it seems can cause serious side effects and we just have to weigh if the benefits outweigh the risks.

Suzanne

CheeseQueen57

Double Whammy said:

And there are side effects of that treatment, too!

My PCP previously watched my bone density.  With breast cancer came an aromatase inhibitor that likes to create more havoc with bone density by leaching any potential for any estrogen.  My oncologist (breast) did recommend a bisphosphanate, but I really wasn't THAT bad, still osteopenic and only minimal osteoporosis which resolved after stopping Arimidex and switching to Tamoxifen.  I declined treatment for now.  I'm due for another bone density scan this spring.  

The side effects of bisphonates are serious and not that uncommon. Once again, it's a Catch 22 situation.  Be wise in your decision making.  I WILL take something if my bone density has declined, but my PCP said "not yet" so I'm happy to not be taking anything currently.  

Keep in mind that everything we do it seems can cause serious side effects and we just have to weigh if the benefits outweigh the risks.

Suzanne

Side effects

I know all the osteoporosis meds can have serious side effects. My endocrinologist is not only cosidering bisohosphonates. But with 2 fractures already, the benefits seem to be outweighing the risks. But she’s still thinking about it. 

pinky104

Bone Density

At my next to last bone density test, I was found to be in the normal range, but just above the level where osteopenia starts.  I haven't had radiation (except for that in CT and PET scans and X-rays).  I figured after chemo this year, my bones would most likely have degenerated further so I would have osteopenia.  Instead, my bone mass increased significantly.  I can't figure that out.  My mother had really bad bones and shrunk from 5'4" to 4'9" by the time she hit 90.  I had started on Evista (Raloxifene) a year before hitting menopause at 51 so that I wouldn't end up like my mother.  Now, I'm 69 and all of a sudden, my bones are getting better.  I didn't think that ever happened.  I haven't changed my life style at all.  The only exercise I get is long shopping sprees, housework, and yard work.  My PA, when I questioned the improvement, said that a lot of osteoarthritis can affect the readings, and my back did show that, but my hip looked great.  He attributed the improvement to the Raloxifene, but I've taken that for 19 years, and when my back was getting worse a couple of years ago, I was on it then.  I can't understand it, but I'm happy about it. 

Soup52

Yes, I had my bone density

Yes, I had my bone density test a couple months ago. My osteopenia moved on to osteoperosis so I’m on the once a week pill. I hate it but wasn’t surprised. My mom had it too and I’m sure the radiation didn’t help.

dgrdalton

Have had osreoporosis about 13 years.

My bone density scans were in the low to mid area of abnormal. I took the pills ( once a week the first year) for 4 years. Then they came out with the news that the drugs were actually casing hip fractures and recommended a year off the drugs. I just never started back on them. I started taking vitamin D3 and magnesium citrate in addition we had fresh raw milk from our dairy goats. I’ve not had any more bone scans, but haven’t lost any height.

Donna