Cancer risks of Tymlos

Posted by loh @loh, Oct 27, 2024

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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@mary1951

@windyshores , you said you had breast cancer. Did you have any radiation? I was given a choice of Evenity or Tymlos, but I have had ongoing dental problems since I was a child, And have had two abscesses in a molar this past year so Evenity petrifies me. However, I did have a course of 6 weeks of radiation on my nose for skin cancer, so the endocrinologist is leery about the Tymlos, while my PCP felt that it would be alright. So I'm at my wits end trying to figure out what to do. I have severe -4.1 Osteoporosis in the spine and have already had two compression fractures, and I agree with you that they are extremely painful and debilitating!

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I would trust my endocrinologist's advice before I would trust advise on osteoporosis treatments from my PCP. Osteoporosis medications and treatment are complex problems, and endocrinologists are more up to date on the latest research. Just my opinion.

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@lylii and @ mary1951

With a -4.1 DEXA an real risk/benefit discussion needs to happen, and preferably between an endocrinologist and an oncologist, and the dentist too. Dental issues pose problems for Prolia and bisphosphonates and to a lesser degree, the full year of Evenity. Prior readiation may or may not pose problems for Tymlos or Forteo.

This is a true rock and a hard place situation. A bisphosphonate will be needed at some point so the dental issues will need to be addressed regardless.

It seems the most self-advocacy needed is in the issue of radiation to nose and cheek and whether that constitutes radiation on bone. Was it a skin cancer? Physicians don't seem to talk to one another. In this case it is needed!

I hope the endo is able to fully absorb the situation and avoid following a general guideline (no Tymlos after radiation) for an individual situation that needs deeper evaluation- especially out of fear of liability. Some endos in my experience can be quite flexible. What is the possible harm from Tymlos after such limited radiation? Who can answer that?

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@gently

mary1951, I applaud your choice. Tymlos had only been suspected of cancer of the bone. The FDA warning has been removed and Tymlos is not longer suspect. It is also, in my opinion, one of two best medications for building strong bone.
I share your fears with Evenity and worry that time will reveal more complications with the heart. I also applaud your choice of mentors. Windyshores really is the best. just to be clear.

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@gently, did you take Tymlos? I confess the side effects scare the daylights out of me. Especially since I already have very low blood pressure. The last thing I need is to get dizzy and fall!

Hoping for the best!

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@windyshores

@lylii and @ mary1951

With a -4.1 DEXA an real risk/benefit discussion needs to happen, and preferably between an endocrinologist and an oncologist, and the dentist too. Dental issues pose problems for Prolia and bisphosphonates and to a lesser degree, the full year of Evenity. Prior readiation may or may not pose problems for Tymlos or Forteo.

This is a true rock and a hard place situation. A bisphosphonate will be needed at some point so the dental issues will need to be addressed regardless.

It seems the most self-advocacy needed is in the issue of radiation to nose and cheek and whether that constitutes radiation on bone. Was it a skin cancer? Physicians don't seem to talk to one another. In this case it is needed!

I hope the endo is able to fully absorb the situation and avoid following a general guideline (no Tymlos after radiation) for an individual situation that needs deeper evaluation- especially out of fear of liability. Some endos in my experience can be quite flexible. What is the possible harm from Tymlos after such limited radiation? Who can answer that?

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@windyshores, it seems we always need to do research and advocate for ourselves. Since the endocrinologist did not seem interested in contacting the radiologist who prescribed my radiation, I am going to try to contact him myself with the question. The endocrinologist did spend a lot of time with me, and in the end said I should personally choose between the two, since there were risks to both.

I forgot to mention to him that I also have aortic atherosclerosis, which can cause heart issues and blood clots, so again, I feel that Tymlos is the safer bet.

My third choice, he said, was to do nothing but not bother to get any more Dexa scans, since it was only a matter of time before I'd have another fracture.

I really didn't appreciate that, even though it might be true. I was a very active 73 year old before this last fracture, so I managed to live a fairly normal life before this one. I unfortunately did a great deal of heavy duty yard work after Hurricane Milton, to clear the debris out of my yard, and I think that is what caused the fracture.

However, this fracture was serious enough that I never want to have another one!
Thanks so much for your advice.

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@mary1951

@gently, did you take Tymlos? I confess the side effects scare the daylights out of me. Especially since I already have very low blood pressure. The last thing I need is to get dizzy and fall!

Hoping for the best!

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@mary1951,
I've never taken Tymlos.
Forteo has the same effect on blood pressure, though it could be more intense with Tymlos. I also have low blood pressure. Worried, I took blood pressure readings every second after my first Forteo dose. The drop is pretty much immediate, but starts to rise immediately after it drops. The drop is caused by vasodilation which you can moderate with something salty because (they say) that salt constrict the blood vessels as soon as it touches your tongue. And if you fill the expanded vessels with fluid, the heart doesn't have to pump so hard to get the blood circulating.
It's good to be careful in the first four hours after injection. Don't rush around cleaning things up, or climb any ladders, no motorcycles. Don't do a lot of bending over. Its a perfect excuse to take it easy, eating blue corn chips or green olives.
I wanted to have the third year with Tymlos, but my doctor isn't cooperating, so I'm having a third year of Forteo.
Mary, you might not be able to tolerate Tymlos, but you'll know right away and just stop taking it, or follow the windyshores' method, or join me on Forteo.
But more likely this will work out well--to stronger bones!

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@mary1951

@gently, did you take Tymlos? I confess the side effects scare the daylights out of me. Especially since I already have very low blood pressure. The last thing I need is to get dizzy and fall!

Hoping for the best!

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@mary1951 I have low blood pressure and checked it with a cuff. If low before the shot I hydrated and ate something salty. After awhile I stopped doing that. I am so grateful to Tymlos and wish I cold take it again!

Interesting fact: I have atrial fibrillation sporadically and on Tymlos for two years didn't have a single episode.

I have several fractures and am the same age. Afte treatment I am back to tai chi though I have to take it a little easier than before. Still, I thought I would never do it again. Lifting will always be a problem though.

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@gently

@mary1951,
I've never taken Tymlos.
Forteo has the same effect on blood pressure, though it could be more intense with Tymlos. I also have low blood pressure. Worried, I took blood pressure readings every second after my first Forteo dose. The drop is pretty much immediate, but starts to rise immediately after it drops. The drop is caused by vasodilation which you can moderate with something salty because (they say) that salt constrict the blood vessels as soon as it touches your tongue. And if you fill the expanded vessels with fluid, the heart doesn't have to pump so hard to get the blood circulating.
It's good to be careful in the first four hours after injection. Don't rush around cleaning things up, or climb any ladders, no motorcycles. Don't do a lot of bending over. Its a perfect excuse to take it easy, eating blue corn chips or green olives.
I wanted to have the third year with Tymlos, but my doctor isn't cooperating, so I'm having a third year of Forteo.
Mary, you might not be able to tolerate Tymlos, but you'll know right away and just stop taking it, or follow the windyshores' method, or join me on Forteo.
But more likely this will work out well--to stronger bones!

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@gently what is the thinking behind the switch - tymlos after 2yr Forteo?

Could you elaborate a 3 consecutive years of Forteo: basis, evidence and treatment monitoring . My endo prescribed a 3rd year Forteo but I chickened out as my unexpected rising of CTX at end of 2yr Forteo made me uneasy.

Thanks a lot!

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I am 51, lift weights, eat well and do yoga. I recently had a bone density test and have osteoporosis. I was totally shocked, I went through menopause early and really had no clue about what could happen to my bones. My spine is -3.2, hips 2.5. My doctor is recommending Tymlos. I am doing my research on the drug and am reading how others went on a different drug after Tymlos. I was thinking I would have to take it for 2 years then stop. I guess I am hopeful my numbers would be better and I can stop. Or do I have to move to another drug even if my numbers look better? Thanks in advance!

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@gently

@mary1951,
I've never taken Tymlos.
Forteo has the same effect on blood pressure, though it could be more intense with Tymlos. I also have low blood pressure. Worried, I took blood pressure readings every second after my first Forteo dose. The drop is pretty much immediate, but starts to rise immediately after it drops. The drop is caused by vasodilation which you can moderate with something salty because (they say) that salt constrict the blood vessels as soon as it touches your tongue. And if you fill the expanded vessels with fluid, the heart doesn't have to pump so hard to get the blood circulating.
It's good to be careful in the first four hours after injection. Don't rush around cleaning things up, or climb any ladders, no motorcycles. Don't do a lot of bending over. Its a perfect excuse to take it easy, eating blue corn chips or green olives.
I wanted to have the third year with Tymlos, but my doctor isn't cooperating, so I'm having a third year of Forteo.
Mary, you might not be able to tolerate Tymlos, but you'll know right away and just stop taking it, or follow the windyshores' method, or join me on Forteo.
But more likely this will work out well--to stronger bones!

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@gently
Thanks for the tips. I eat a lot of salt anyway, because I have had hyponatremia more than once and landed in the hospital because of it. But I didn't know about the vasodilation. It does scare me, but I guess I'll see how it goes.
Did the Forteo improve your Dexa score, if you don't mind me asking?

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@kcfrancis

I am 51, lift weights, eat well and do yoga. I recently had a bone density test and have osteoporosis. I was totally shocked, I went through menopause early and really had no clue about what could happen to my bones. My spine is -3.2, hips 2.5. My doctor is recommending Tymlos. I am doing my research on the drug and am reading how others went on a different drug after Tymlos. I was thinking I would have to take it for 2 years then stop. I guess I am hopeful my numbers would be better and I can stop. Or do I have to move to another drug even if my numbers look better? Thanks in advance!

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@kcfrancis many of us go on Reclast (or Fosamax) to "lock in" gains after Tymlos. I visualize it as coating the bone to seal gains in (whether accurate I don't know). Your bone density isn't terrible so you might be able to do one infusion. Your doctor can advise you on this.

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