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Fosomax or other Meds / Osteoporosis

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Before starting my treatments last February by OB did my first bone density test. Showed some thinnng at head of my hips. Wanted this test to have starting point before treatment, knowing chemo/radiation (pelvic) can be rough on our bones. Being a smaller stature person puts me at higher risk for osteo. Since January, been having some mild pain in hip and buttock area. Appt with doc this week confirmed it's not cancer, but most likey issues with bone thinning in this area. I've been taking a great line of nutritional products which includes calcium and D3, plus eating better and doing many "weight-bearing" exercises, but doc still wants to start Fosomax.

This was a tough thing to swallow as I'm of the school -- body will heal itself with proper food and nutrients. Have been searching on the web for info on Foxomax and as with all RX, it's scary. Long-term affects can make the bone pain even worse, plus daily issues.

Anyone been in my shoes and can shed some light on what they did or didn't do? I'm holding off before filling this Rx, even talking to my nutritionist.

Thanks for any input!
Jan

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I had a bone scan a year before I was diagnosed with cancer, and already had some bone density issues starting. They wanted to start me on the pills, but agreed with my desire to take extra calcium supplements and faithfully do weight-bearing exercises 4 days a week. I did that for a year, alternating my weight-lifting with cardio workouts the other days of the week. Then I got my surprise cancer diagnosis and there was no more time (or energy) for daily workouts. But, I guess I'm saying, if you can combine an increase in calcium in your diet with weight-bearing exercises, you may be able to increase your bone density.

It sounds like your bone thinning is in a very specific area (radiation related??). For that reason, and the scary consequences of fractures if this is radiation-related, I think I'd take the Fosimax. It's funny that you brought this up, as I have already made a note for myself to discuss bone density with my oncologist when I see him 4/08, now that I am back in remission and not taking chemo.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Linda,

Thanks for the information. Would have been nice to see how you did after the year of more calcium and exercising....part of this scary cancer as it's sneaky! Did you know we need vitamin D3 to help us absorb the calcium (1000 mg/day) vs. 1200 mg calcium/day? I learned this after my bone density scan last year from the technitian. I'm small framed weighing 113 lbs and had hysterectomy, thrown into menopause, which increases risks for low bone density.

I can only assume since having radiation in pelvic area it made the bone issues worse. I've decided today to give it a shot with changing of vitamins and increase my weight-bearing exercises. My hubbie is a big exercise guru...bike, weights, swimming, etc. So naturally I'm the same way but at a lower level. He got me to do the weights at least once per week and now after this diagnosis I'm bumping up to twice per week and continuing 5 days per week walking, or at gym using machines such as eliptical. This should help.

Listing a link below on Fosomax...very scary to think we take the meds to help bones but in end makes it and other health issues worse.

http://abcnews.go.com/GMA/OnCall/fosamax-long-term-bone-strengthening-drug-linked-fractures/story?id=10045179

Jan

MoeKay
Posts: 63
Joined: Feb 2004

Jan,

I had a hysterectomy and radiation for endometrial cancer in 1999. After I finished treatment, my primary doctor at the time had me get at bone density test which was normal. He handed me a prescription for Actonel, another bisphosphonate similar to Fosamax. His comment was, "although your bones are normal now, they won't be for long." I didn't fill the prescription, and for that, and a number of other reasons, I found a new primary physician.

I have had regular bone density testing since then, and although there have been little ups and downs, my latest DEXA scan was normal. Over the years, I have done weight bearing exercise, taken 1,000-1,200 mg. calcium a day, broken down into 500-600 doses, along with 250 mg. magnesium twice a day (and vitamin D). The magnesium is needed for optimal absorption of the calcium.

Since I was handed that first scrip in 1999, the reports began to come out about the bisphosphonates possibly causing osteonecrosis of the jaw, esophageal cancer, and unusual femur fractures. While the risks of these serious adverse side effects are felt to be rare, my gut tells me that the reporting system for side effects is not without its own set of problems, and may not give a true picture of the situation.

If I were you, I would want another bone density test, a consult with an orthopedist, and a hip MRI before I would even consider starting the drug. I would not want to simply assume that your bones had thinned further due to the radiation. Based on my situation, this does not necessarily have to be the case, and your pain could be due to osteoarthritis, rather than osteoporosis, or some other problem entirely.

Best of luck to you,

MoeKay

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Great advice from Jan. I agree with her 100%. I was taking Fosamax some years ago due to some thinning and discontinued it once I started hearing about the side effects, particularly the necrosis in the jaw. My dental hygienist started telling me about what they were seeing, etc. I have been taking Calcium (in divided doses) and Vit D-3 2000 mg/day. I have also tried to be more conscientious about getting plenty of Calcium via my diet as that is the BEST source of Vit D. My bone density last year was good!

A recently attended a lecture by a naturopathic physician and she stessed the importance of Vit D as well. She said everyone should have a Vit D level annually because if you are low it impacts the absorption of calcium and also has been shown to decrease the incidence of colon cancer in particular.

If you google Calcium, Vit D and Creighton University you will find tons of research they have been conducting for many years on Calcium and Vit D for osteoporosis and now are also finding lower incidence of cancer in people on Calcium and Vit D. Fascinating research.

No Fosamax or the likes for me! Am trying to crank up my weight bearing exercises...

Karen

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Ladies,

The way I look at this disease, if the disease doesn't kill us the side affects from meds will...scary in my mind~! Avoided meds thusfar, and will continue. I always think outside of the box, as know just because I'm getting advice from my oncol, doesn't mean he's correct. Therefore, I do my own research before proceeding further.

Moe Kay, I do understand what you're saying that could be something else not bone density issues, such as arthritis. I go to a great chiropractor and he does seem some misalignment in the hip area frequently and told me it could be my sacroilliac which is having issues or osteo or simply arthritis. Yep it can cause the pain, which is part of inflammation. That's in my mind too. My oncol which I saw this past week said no cancer, but could just be bone issues due to my bone density testing, so here take this med...yuck! If it's still bothersome we'll do a test to see what's going on. MRI probably the best as uses less radiation and supposely better to see the muscles, etc. and smaller areas...right?

Karen, Nice to hear your journey and how you changed after research...sound like me! I've already made up my mind to not take meds and work a bit more with my calcium and Vit D3, as do take it now but divide it up during the day. I take a liquid vitamin regime which works so not having to wait for a pill to breakdown. Many times these pills never break down and en up in our sewage system..boohoo what a waste of money. I did read exactly what you typed about the side affects and can't imagine after all those years yep the bone density is better but have other issues such as jaw???

Also going to increase my weight lifting schedule as we have free weights in our home...remember my hubbie is the weight lifter. He has always pounded on me to do the weights as that is the best for building bones. After 20 yrs of his pounding and not doing much with weights...wahla! here I had the bone density and it was right there...low! Hubbie was right on the money, so now going down to basement 2x per week for now for weight lifting and other days of week either at gym for machines or outside to walk.

What are you all doing for working out and vitamin regime? Interested to hear...

Enjoy the day....and thanks!!!
Jan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It's generic for Actenol I think. I was starting to be concerned and plan to check with my ONC when I see him this week.

I really don't like the idea and interestingly - I started getting hip pain 4 months ago. I wrote it off as bursitis. It is getting slightly better now. I will also call my dentist office and check with them.

Let's face it, everything has sides effects and you are right - If the disease doesn't get us the treatment probably will!!

I agree with all that has been said about diet and exercise. I need to be better with the calcium.

My best to all you wonderful women. Mary Ann

culka's picture
culka
Posts: 158
Joined: Oct 2009

and now I`m really sick and tired of that. We went for winter holiday, flight there, not bad, week in car, uff, flight back, I had tears in my eyes, so naturally I went to see my doctor. He gave me stuff like Tylenol 4 and sent me for bone scan (clear, of course). During these 20 months I had 2 bone scans, MRI for hips, bone density scan (my hips are like 20 years old) and everything were clear. I had issue with Tylenol so my MD change it for Gabapentin. After 5 days a didn`t know if I`m going to puke, past out or what, so I didn`t touch it again.
Because I`m crazy about nutrition I finally started eat according Dr. Dough Graham advise. His book The diet 80/10/10 is good source of info. And guess what. My tailbone pain slowly disappearing (only after a year) and hips are getting better day by day.
Now I try to be 100% raw vegan with some slip back, no supplements, no pain killers and right now almost no pain. I`m not taking Ca, even if my food provide me with only 500-600mg a day, because I`m not eating acid forming food which taking Ca from bones in order to digest it.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Culka, I'm interested in this diet. Quickly went to the doctor's sight but didn't see too many specifics. Looks like a lot of raw vegetable eating. How about chicken and fish? No vitamins at all?

I will comment that if our diets are more on side of PLANT-LIKE and RAW (organic) our bodies function so much better. Read so much about chicken with hormones and even old eggs in stores which aren't good. Gosh just never know what to eat do we?

Thanks!
Jan

culka's picture
culka
Posts: 158
Joined: Oct 2009

80% carbs,10% fats and 10% proteins.

In that time when Claudia was constantly kicking our "assets" (god bless her for that) we were reading Anticancer book and Dr. Boik book and The China Study by Dr. Campbell. In The China Study we find info how he was able start or stop cancer simply by giving a mouse different amount of protein. When it was under 5% cancer stopped. And he was using casein, which is milk protein.
Chinese people mostly cook their food and they are still able to eat low protein, low fat diet. By low fat I didn't mean o% fat yogurt or any other diary product.
Dr. Graham book is about raw vegan diet, exactly fruit and green leaves with little bit of nuts and seeds. Don't eat anything if you cant make meal of it.
I don't have sweet tooth and after 3 days eating bananas, oranges, mangoes and strawberries with leaves I was craving something salty. I made whole wheat pizza for my family and slipped back. Then I realized that I was pain free and the pain just came back. It happened last weekend, Tuesday was that pizza feast, 2 days back on track, Friday fast (just water, nothing else) and now is Sunday and I am fine.
Next step will be figure out how much cooked food I can eat and remain pain free. Or if it has to be only raw. Feeling in stomach on raw is awesome, no heavy feeling, but that constant sweet taste???? I don't know.
For now I have to use these programs like fitday.com or nutridiary.com to make sure that I am eating enough. I'm expecting to loose some weight. It is good that I don't have to see any doctor because I'm already like frozen fish stick (according my husband).
Looks like constant education, maybe I will be ready for PhD???

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