Is post radiation osteopenia reversible?

MAbound

I just had a bone density scan today 13 months after I finished pelvic radiation therapy and it now shows I have osteopenia in both femoral necks. I had a baseline scan done in 2009 and I was normal. I don't get to talk with my gyno (not my oncologist) who ordered this until April, so I'm wondering if I could hear from others who developed this after pelvic radiation and what kind of treatment gets recommended when this happens.

I've seen some of the suggestions on-line for reversing osteopenia, but I'm wondering if they hold true and work when the cause is from radiation? This is new territory for me, so I have a few things to learn about it and thought a discussion about it might also help others.

 

NoTimeForCancer

I had a bone density a few

I had a bone density a few years prior to all this chemo and radiation and had osteopenia then.  They wanted to push fosamax, or one of those bone drugs, and decided to pass.  There are side effects with anything you take and continued to take calcium w/ D3 and increase calcium rich foods.  I should do weight bearing things and need to move more - a 2018 resolution?!  

MAbound, It has been 8 - 9 years since your baseline?  I don't know how often we are supposed to have these, so it is hard to say. Anyone know the recommendation on frequency?

MAbound

HTCZ

I'm on a calcium-sparing diuretic because of edema caused by varicose veins, so I've avoided calcium supplements for the past 10 years. I do not want kidney stones!! It hasn't been an issue until now because I hadn't gone through menopause until I had my hysterectomy at 59. I wonder if a different diruetic is in order now so that I can take calcium supplements although I'm under the impression that they're not really supposed to be that much help? I need the diuretic or my legs swell up when standing and sitting on my butt to avoid that would not be a good idea. I had venous reduction on both legs already, so can't go that route anymore, either.

I'm taking a small dose of magnesium (100mg) with Vitamin D to aid absorption of both. My magnesium and potassium levels are always just under normal because of the diuretic so that's why I can take the magnesium safely. I had been taking 5000 IU of D, but when my level went up to 54 I stopped taking any till my level was checked again last week and now it's 34. I know the normal range is 30-100, but newer research is showing the sweet spot is in the 30's and that levels nearer to 50 and above can actually have harmful effects. I'm now starting on a maintenance dose of 1000 IU of D/day and we'll see how I do on that the next time I get tested.  I also have to be careful about sun exposure because both the HTCZ I'm on and the Megace make me more susceptible to burning and skin cancer, so most of my D has to come from a supplement.

No Time, the answer to your question is, it depends. Most insurances will cover them every other year, but they can be done more or less frequently depending on the results. I had my baseline scan around when I should have been about to go into menopause and because it was normal my PCP was waiting for menopause to happen before repeating it. And that didn't happen for me until the hysterectomy. Have you had any more bone density tests since radiation? What's been happening with your ostopenia since then?

I guess the burning question I have is that if the bone mineral loss was induced by the radiation, will methods used to treat osteopenia caused elsewise work under these circumstances or am I doomed to future hip replacements no matter what I do? 

CheeseQueen57

Same problem except

My osteopenia turned in to osteoporosis and I suffered 2 fractures this year. My endo says I’m a hip fracture waiting to happen. She is recommending either the IV or injection type because of the GI problems. She did do a blood test that’s supposed to determine if my bone is still turning over at a high rate. Be sure you get thee to someone that really knows a lot about osteoporosis. Many gyns pretend they know. But of course all treatment is on hold until I solve my kidney problem which the more I read about it sounds like not a pretty picture. 

NoTimeForCancer

MAbound said:

HTCZ

I'm on a calcium-sparing diuretic because of edema caused by varicose veins, so I've avoided calcium supplements for the past 10 years. I do not want kidney stones!! It hasn't been an issue until now because I hadn't gone through menopause until I had my hysterectomy at 59. I wonder if a different diruetic is in order now so that I can take calcium supplements although I'm under the impression that they're not really supposed to be that much help? I need the diuretic or my legs swell up when standing and sitting on my butt to avoid that would not be a good idea. I had venous reduction on both legs already, so can't go that route anymore, either.

I'm taking a small dose of magnesium (100mg) with Vitamin D to aid absorption of both. My magnesium and potassium levels are always just under normal because of the diuretic so that's why I can take the magnesium safely. I had been taking 5000 IU of D, but when my level went up to 54 I stopped taking any till my level was checked again last week and now it's 34. I know the normal range is 30-100, but newer research is showing the sweet spot is in the 30's and that levels nearer to 50 and above can actually have harmful effects. I'm now starting on a maintenance dose of 1000 IU of D/day and we'll see how I do on that the next time I get tested.  I also have to be careful about sun exposure because both the HTCZ I'm on and the Megace make me more susceptible to burning and skin cancer, so most of my D has to come from a supplement.

No Time, the answer to your question is, it depends. Most insurances will cover them every other year, but they can be done more or less frequently depending on the results. I had my baseline scan around when I should have been about to go into menopause and because it was normal my PCP was waiting for menopause to happen before repeating it. And that didn't happen for me until the hysterectomy. Have you had any more bone density tests since radiation? What's been happening with your ostopenia since then?

I guess the burning question I have is that if the bone mineral loss was induced by the radiation, will methods used to treat osteopenia caused elsewise work under these circumstances or am I doomed to future hip replacements no matter what I do? 

MAbound, I haven't had any

MAbound, I haven't had any other scans...I guess I can add that to the list of things to do.  I suspect all these treatments have a cumulative effect on our entire bodies.  Often I think co-workers think, "She is OK!" but I think they have no idea what SURVIVORS live with.  I was talking with my boss recently and I told him I have 'old lady skin'.  (I mean like 80 -90 year old, crepey skin)  Hormones have a lot to do with our skin, etc..and since the ovaries were removed that huge, hormone producing machine is gone.  He said, "well you had to" - this from a man who is a complete sexist and flirts with young females before my eyes.  Don't get me wrong - I don't want anything to do with this guy - in the work place I just want the respect I earned because of my work - not my appearance.

I guess I am getting off topic here.  

For me, I suspect chemo and radiation have altered my body - there is a "new normal" to me.  Anyone who goes through treatment and is surviving ALWAYS hears, "with your history..."  However, there are a lot more of us out there now, and that is good.  

MoeKay

Bone Density Results

Hi MAbound,

Since your prior bone density scan was in 2009, I would question whether your osteopenia can be solely attributed to the radiation.  It could also just be post-menopausal bone loss. 

I've got a bunch of results from about 9 bone density (DEXA) scans over the years.  As you may know, I had both external pelvic radiation and brachytherapy in 1999.  While I do have slight osteopenia in my total left hip (T score of -1.2, with normal being up to -1.0), both my left femoral neck and AP spine are within normal range.  My test scores have gone up and down slightly several times since my first test results in 2001, but my GP has never raised the issue of drug treatment.  I do weight work at the gym several days a week, in addition to aerobic exercise several other days a week, and also take calcium supplements once a day as well as vitamin D twice a day.  I used to take magnesium, but discontinued that due to my microscopic colitis, but I eat a lot of almonds, which are high in magnesium.  I think the exercise really has helped me maintain my bone density up to this point (age 70). 

Within the past couple of months I also stopped drinking coffee and switched to tea.  I did this to see if it made a difference with my microscopic colitis, but have since learned that tea may have bone-density-related benefits.  You mentioned that you're on a diuretic for your edema.  I found the following information which discusses the possible benefit on bone density of the diuretic chlorthalidone.  https://www.health.harvard.edu/heart-health/diuretic-blood-pressure-drug-linked-to-fewer-hip-fractures.  Maybe you could do some further research on this and see what your doctor thinks. 

My insurance carrier has paid for all of my DEXA scans without any problems or questions. 

All the best,

MoeKay

derMaus

NoTimeForCancer said:

MAbound, I haven't had any

MAbound, I haven't had any other scans...I guess I can add that to the list of things to do.  I suspect all these treatments have a cumulative effect on our entire bodies.  Often I think co-workers think, "She is OK!" but I think they have no idea what SURVIVORS live with.  I was talking with my boss recently and I told him I have 'old lady skin'.  (I mean like 80 -90 year old, crepey skin)  Hormones have a lot to do with our skin, etc..and since the ovaries were removed that huge, hormone producing machine is gone.  He said, "well you had to" - this from a man who is a complete sexist and flirts with young females before my eyes.  Don't get me wrong - I don't want anything to do with this guy - in the work place I just want the respect I earned because of my work - not my appearance.

I guess I am getting off topic here.  

For me, I suspect chemo and radiation have altered my body - there is a "new normal" to me.  Anyone who goes through treatment and is surviving ALWAYS hears, "with your history..."  However, there are a lot more of us out there now, and that is good.  

Old Lady Skin

I'm glad you brought up the skin thing. I, too, have a helluva case of old lady skin and can't figure out which of several treatments/toxins gave it to me. My skin was fine - even good - all the way through chemo, but sortly after starting radiation it TANKED. I remember clearly: I was laying on the couch reading and glanced down to see my forearm flapping in the breeze, wrinkled, crepey and hanging. I was appalled: where did THAT come from? My mother died at age 93 and her arms didn't look like that. My skin hasn't been the same since, and it hangs/flaps all over my body. I didn't have a Kardashian-esque booty, but it was serviceable enough. Afterwards, it hung down like an empty sack; my legs flap in the breeze - no more shorts for me - you get the general idea. I found this very strange but apparently I'm not alone? As time passes I'm losing any hope that it will go away on it's own accord... 

MAbound

Always so helpful

I was hoping you'd have something to post about this. You're right, without a scan done before radiation for comparison there is no way to know for certain that this is radiation related, but I'm suspicious because I haven't been in menopause for very long and the readings were identical for both hips, i.e. they are deteriorating together at the exact same rate which makes me think a certain event (i.e. the radiation) started the ball rolling on them together. Since this a known long-term side effect of radiation you'd think doing a pre-radiation scan would be SOP.

I looked at the link and it's interesting that the diuretic seemed to have a hip-fracture protective effect compared to the Ace Inihibitor and Calcium channel blockers, but frustrating that they didn't compare different types of diurectics instead. The focus of the study was hypertension treatment rather than for drugs that treat edema so that is probably why. Because both HTCZ and Clorthalidone are thiazide diuretics (and the Clorthalidone is the more powerful of the two), I don't think switching to chlorthalidone would help me to be able to take a Calcium supplement without increasing the risk of kidney stones and it's also supposed to make blood sugar control more difficult and I'm already dealing with that because of the Megace. In fact, it also interacts with Vitamin D supplements to cause hypercalcemia (calcium released into the bloodstream from bone) and no way can I stop taking Vitamin D supplements.

I got a call a little while ago from my gyno's nurse about the test and all they are recommending is 1200mg Calcium/day and increasing weight bearing excercize from what I currently do. She said I can try to get it from my diet rather than a supplement, but it's going to be a chore to now have to track my daily intake for that, too. I'll have to look into joining a gym after we finish our move to MA this year. I wonder if being on your feet all day packing boxes qualifies as weight bearing excercize? My legs sure are tired at the end of the day!! 

I saw something recently about tea and osteoporosis. Apparently you should lay off caffeine to prevent or reverse ostopenia, but tea, even if it has caffeine, is ok. I wonder if one kind of tea is better than others and why is caffeine in tea ok but not in coffee? More to try to find out about I guess. There are not enough hours in the day for me keep up with everything lately, so I really appreciate others sharing what they know here and who knows who else is interested in this.

 

CheeseQueen57

My experience

I went through menopause at 39 and have been dealing with this bone issue for 20 years. I have taken the various medications off and on And have been getting dexascans every 2 years for 20 years. Insurance will generally pay every 2 years and you won’t generally see bone changes in less than that period of time. My last dexascan was right before my diagnosis and indicated osteopenia and my gyn (the one who didn’t catch the cancer) was recommending treatment. Then things went to hell. 

After treatment according to my most recent dexascan in December my bone health had significantly deteriorated, I had suffered 2 fractures and my endo attributes the rapid deterioration to radiation and steroids. 

BTW, I think the current evidence is indicating calcium supplements don’t help the situation. Although I’m still taking mine. The exercise is great but I have a hard time complying with that. But a hip fracture could be the end of you. 

MAbound

Endo

Has your endo ever mentioned treating you with Parathyroid Hormone since things have progressed towards your being a hip fracture waiting to happen?

CheeseQueen57

MAbound said:

Endo

Has your endo ever mentioned treating you with Parathyroid Hormone since things have progressed towards your being a hip fracture waiting to happen?

No

but I know she’s checked values. 

MoeKay

Both Hips

MAbound,

Interesting that your bone density test checked both hips.  All of my tests only provided results for the left hip (femoral neck and total hip) in addition to the spine. 

Yes, keep packing boxes, especially with relatively heavy things!  Walking helps with hip bone density, but it is not enough.  Moving the boxes would be even better, as long as you can avoid hurting yourself of course.  I'm curious to see what my next bone density test shows.  My last one was in May 2015, shortly before I retired, and I think my GP's plan is that I get another test this spring.  Although I always have done regular aerobic exercise and weight work, I used to have an office job and spent a lot of the day sitting at a desk.  Since retirement, I'm on my feet most of the day, going up and down the steps many times a day.  Plus, now that I'm retired, I spend much more time at the gym. 

About tea, it appears that it may be the flavinoids or other components in tea that may have positive benefits on the bones:  http://guide2bonehealth.com/drinking-tea-help-bones. 

Cheese,

I agree that the latest research is stating that there may not be a benefit from calcium supplements, which is why I've reduced my intake from twice a day to once.  However, the way research goes back and forth on things, I suspect we haven't heard the final word on this one.  Also, my friend who's 59 has been receiving Prolia injections for pretty severe osteoporosis for over 2 years.  She recently told me that her latest DEXA showed no improvement at all since she started with Prolia, so the drugs don't always work wonders either.  She is a coffee drinker, however, and I told her she might want to consider switching to tea, either fully or at least partially. 

MoeKay

Soup52

I believe if you have

I believe if you have osteopenia you should have a dexascan every 2 years. My osteopenia turned into osteoporosis after all my treatments were finished. Yes I had radiTion and chemo so they might have contributed, but my mother had it also so who knows? I’m on the once a week pill now which I don’t enjoy and would rather have the shot but heard it’s expensive and they want you to try the other first. I would top it off that though I like to walk I haven’t done it much because of my knee which I’m having replaced the end of the month.

NoTimeForCancer

Soup52 said:

I believe if you have

I believe if you have osteopenia you should have a dexascan every 2 years. My osteopenia turned into osteoporosis after all my treatments were finished. Yes I had radiTion and chemo so they might have contributed, but my mother had it also so who knows? I’m on the once a week pill now which I don’t enjoy and would rather have the shot but heard it’s expensive and they want you to try the other first. I would top it off that though I like to walk I haven’t done it much because of my knee which I’m having replaced the end of the month.

Soup, thanks for the info, I

Soup, thanks for the info, I will look into getting one.  Also, good luck with the knee, please let us know you do.