Cancer risks of Tymlos

Posted by loh @loh, Oct 27 10:24am

I am 62 and have osteoporosis. The doc suggested Tymlos and between side effects and risks of cancer I’m petrified to start this process. It is a huge leap for me to take something like this, I barely take aspirin or Advil. For those who have taken it, was there a huge benefit? Did the benefits continue after stopping or did it just buy you a little time with bone density?

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loh | @loh | Nov 2 3:47pm

In reply to @arlene1958 "I don’t want to sound stupid but I’ve never used any meds so when you say..." + (show)

I just turn the pen all the way the end, where it says 8. Mine doesn’t have any other numbers (maybe 0 to start).

loh | @loh | Nov 2 3:49pm

In reply to @loh "I just turn the pen all the way the end, where it says 8. Mine doesn’t..." + (show)

I just started this week and have been doing it in the evening. I wake up with a pounding headache so if that continues I’ll switch to morning and see if that helps.

windyshores | @windyshores | Nov 2 3:52pm

In reply to @loh "I just started this week and have been doing it in the evening. I wake up..." + (show)

@loh that is the main reason I switched to morning and my headaches stopped. Good luck!

arlene1958 | @arlene1958 | Nov 2 6:38pm

In reply to @loh "I just turn the pen all the way the end, where it says 8. Mine doesn’t..." + (show)

Ok thank you

stuffy | @stuffy | Nov 3 11:10am

In reply to @windyshores "@yogagirl57 they gave rats huge doses. Osteosarcoma has not been an issue with human use. The..." + (show)

Is there any way to test for quality of bone? As in Prolia lowers the numbers and fills in some gaps but supposedly - say the naysayers - this "new" bone is actually weaker bone, an imbalance in old cells leaving and not actual new bone. But you do get better numbers. Is there any way to know?

windyshores | @windyshores | Nov 3 3:51pm

In reply to @stuffy "Is there any way to test for quality of bone? As in Prolia lowers the numbers..." + (show)

@stuffy you describe a problem with anti-resoprtives, both Prolia and bisphosphonates. People on here are discussing TBS- Trabecular Bone Score, available with some DEXA's, and Echolight. There may be others too.

ps Prolia and other meds raise numbers 🙂

stuffy | @stuffy | Nov 3 4:14pm

In reply to @windyshores "@stuffy you describe a problem with anti-resoprtives, both Prolia and bisphosphonates. People on here are discussing..." + (show)

Actually I'm talking all of them... I'm 86 with osteoporosis per DEXA. I've been prescribed both bisphosphonates and Prolia but refused them. I want more information on what's happening with my bones, and have discovered that there's a TBS scan DXA available at the very clinic where I'm being - most recently - treated, but that wasn't mentioned to me. I also want to get an Echolight, and have discovered a clinic fairly near me where I can do that.
I just read on the Mayo website (Dr. Drake) that MGUS, which I have, has a strong connection to osteoporosis and I'm guessing that's my situation - though my top-notch geriatrician and two different endos at two different academic institutions didn't mention it either.
I don't think I want any of these drugs, but I also don't want to crumble into a big heap anytime soon. So I would like to have some serious data so it can be tracked and I can get an idea of how much risk I'm taking on by refusing treatment, if any. I have Keith McCormick's book, which I'm wading through, but so far this site has the best information I've discovered. And the smartest patients...
P.S. I own a Power Plate and have been using it for decades. My first endo says it's too strong and was interested in a much gentler one - but she says that hasn't worked out for osteoporosis, unfortunately.

arlene1958 | @arlene1958 | Nov 3 4:27pm

In reply to @loh "I just started this week and have been doing it in the evening. I wake up..." + (show)

If you were to switch to using the meds during the day how would you do that? It’s supposed to be a once x 24 hrs. Would you skip a night and start during the day and vise versa.

loh | @loh | Nov 3 5:35pm

In reply to @arlene1958 "If you were to switch to using the meds during the day how would you do..." + (show)

I was wondering how people made that change as well. I assume you can do it over a few days (10pm, 7pm, 3pm…), but curious what others have done.

njx58 | @njx58 | Nov 3 6:36pm

In reply to @loh "I was wondering how people made that change as well. I assume you can do it..." + (show)

I don't think it matters. Even if you miss a day entirely, it's not a big deal. According to the literature:

"If you miss your dose of Tymlos, take it as soon as you can that day. For example, if you miss a dose on Wednesday, take your dose as soon as you remember on Wednesday. However, if it’s already the next day, just skip your missed dose and take only one dose as usual."

So, I wouldn't be concerned about taking it on a Monday morning and then switching to Tuesday night. Just don't take it twice in one day.