Cancer risks of Tymlos

@loh, I understand your fears as I felt the same way prior to taking Tymlos (rarely took pain meds like Tylenol, Motrin, etc). I resisted taking any osteo meds for over 5 years until a friend helped me understand that my current choices would greatly impact my future health (duh). I then took Fosamax for two years with little change in bone density. A spontaneous fracture in my toe allowed my endocrinologist to fast track me to a bone building drug and I started with Tymlos. I ramped up on Tymlos over the course of a week and have had moderate pain in my legs throughout the past year but recently had a DEXA scan after one year on Tymlos and saw significantly improved numbers (from -3 to -2, for example). We have to take care of our future selves. Best of luck to you.

I really appreciate your comments, so helpful to me! It is so foreign for me to take something like this, but I am an active person and want to remain active for as long as possible.

@arlene1958 I had intense headaches in the morning when I did Tymlos in the evening. Also I have afib episodes every once in awhile and they always happen in the evening, so that is a time when I was more nervous about an increased heart rate with Tymlos, even short-lived as it is. I also read a study on Forteo that said it was slightly more effective if done in the morning.

As for communication with my doctor. I have long experience (kids, me, mother) with understanding that medical prescriptions are not "written in stone" (a doctor's actual words to me on asthma). With a kid with type 1 diabetes I have had responsibility to manage in a way that changed my view of medicine. (Insulin doses change all the time and are done by the patient, sometimes hourly. ) That doesn't mean I don't respect and communicate with my doctors, but I do see our role as patients as important not only in healing but in self-protection.

I have had the same endo since 2006. That year, I had a traumatic fall and fractured 3 thoracic vertebrae. Regardless of cause, these made me more vulnerable to further fractures even with DEXA's that weren't that bad at the time. I read a lot about holistic approaches and considered medications.

My endo has watched me try to get on meds for a long time. Could not do Fosamax (terrible GERD). Back when Tymlos was not available, I tried Forteo and almost passed out. I had to stay in the office for 90 minutes until I felt safe. I visited an immunologist who failed to desensitize me and pronounced that my immune system "had gone awry." (I actually have two autoimmune diseases). I tried a 10% dose at some point (I shot the dose into a sterile cup, used my daughter's insulin syringe to draw out 10%) which amused my doctor, but I still had a reaction of not being able to breathe and feeling faint. (When I told my doctor about this, he laughed and said I was "creative.")

Had breast cancer and did hormonal meds for 5 years and my endo did not want to do Reclast because of my afib. That has since been disproven but... at any rate I lost a lot of bone and fractured 3 lumbar vertebrae in 2021.

I tried full dose Tymlos and then half dose and had a long afib episode that put me in the ICU ( I have low bp so treatment is hard). I absolutely do not think this was due to Tymlos (my two years on Tymlos was the ONLY time I went two whole years with NO afib!) but at the time it did prompt some concerns so I stopped and consulted with two cardiologists and two endos about next step. One cardiologist just googled side effects (!) and another suggested Evenity over Tymlos. Endo's said Tymlos. Argh!

I noted that the Tymlos pen had "clicks" to measure dose (MD and RN did not mention this, nor did Tymlos or pharmacist). Since I had tried desensitization with an immunologist in the past, it occurred to me that I could again try a lower dose and move up. Also from my experience with hormonal meds for cancer, I knew that the body could sometimes get accustomed to hormonal treatments. The 10% had failed with Forteo but it was worth a try.

So I went down to two clicks on the pen and tolerated them, and moved up every week or two. Given the misery of fractures (believe me they can be excruciating and disabling: still can't lift a liter bottle without feeling it) I was committed to the highest possible dose that was bearable. This is an important point: I fear that people are titrating now with the expectation of avoiding side effects.

I got to 7 clicks and still had some side effects but they were tolerable and over time, even, more than tolerable, but not absent! A few days I was able to do 8 clicks. If I had something important to do I would do 6. Most days I did 7. Excellent gains of 19.1% in spine, going from severe to borderline. I was able to live life and felt so much safer.

Did I tell my doctor? Yes I used the portal to tell him that I had gotten to a half dose and was moving up. He was happy. He told me he is now suggesting titration to some of his patients, since it is better than quitting. He may have come to this himself without any influence from my experience.

I think Tymlos should publicize this but it would require time and money for studies. My doctor is usually bound by data and doesn't go by anecdotes but I think he is finding that the patients who might otherwise quit, can continue on Tymlos by titrating or even doing lower doses. He told me that even a half dose would help and he was happy with 6 clicks. Even happier with 7!

Long answer! Basically, I told him after I tried the lower dose and had moved up to half dose and he was pleased.

ps My endo does not do bone markers. DEXA was done at 18 months. I did do bone markers through PCP and though it looked like effect had waned at 18 months, I finished the two years. I have seen McCormick sporadically for years and years, before he became famous, but overall follow my endo's advice.

@loh I do not think it is necessary to ask permission first, but titration should not be too long and we should get to the highest dose we can tolerate, which may mean some side effects. Your reply is important: people can try a full dose first because many people will tolerate that! I only titrated because I could not tolerate full dose at first and knew that the body can acclimate. If you can start at full dose that is great and I hope others will try too. I never meant this titration strategy to be for everyone, only for those who have trouble getting on to the medication! People can do what they want: some people are starting low because of fear. But some of those same people will do fine with full dose. I am very sensitive.

Keep us posted on the headache!

@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!

@mary1951 no I did not have radiation (one out of 5 radiologists would have recommended it, I was told).

I understand that at -4.1 you might feel you don't have much time to decide. Can you see the dental specialists necessary to get cleared for Evenity? Can you make it a year on Evenity without extraction?

You could also do 4-6 months of Evenity (talk to your doctor). The strongest bone building happens in the early months. I did 4 months after Tymlos then Reclast.

I don't know if such localized radiation (nose) is a problem. Was it skin cancer or bone? Did your endocrinologist look into it or just give a standardized answer based on radiation as a contraindication?

The Tymlos site says that you need to tell your doctor if you :
-have or have had cancer in your bones.
-have or have had radiation therapy involving your bones.

Would Tymlos still be useful for the rest of your body and would it pose any harm? I would make sure to see an endo who can explain all this and give you an answer that is individual and customized to your situation.

No matter what you do, you will probably need to do a bisphosphonate to lock in gains. Those are stronger anti-resorptives than Evenity.

@windyshores , when you say one out of 5 radiologists would have recommended it, do you mean they would have recommended that you have radiation, or that they would have recommended Tymlos? Sorry to be thick.

I think I have decided that I firmly do not want to do Evenity after reading an article in Science Direct about an 80 year old woman who developed narcosis of the jaw after using Evenity. The article was very graphic and very scary.

While I realize that this is rare, Evenity has not been on the market that long, and so it's hard to know what the incidence rate will be in 10 years. In addition the warnings about the heart and clots was enough for me to discard Evenity.

So that leaves Tymlos. My endocrinologist felt that the radiation I had on my cheek and nose for skin cancer was a cause for concern, but so are fractures. So I guess I am going to try the TYmlos and hope for the best. The nose doesn't have a lot of bone, and I only had radiation on one cheek.

I hope I'm doing the right thing.

Thanks for taking the time to help me. I've been reading your comments and like the idea of starting at a low dose. As Someone who is very sensitive to medication that was a relief to know I could do that!

@mary1951 just to be clear, I started at a half dose and had trouble with it, so I went down to 1/4 dose and then moved up. I ended up doing 7/8.

Evenity is a gentler anti-resorptive than bisphosphonates or Prolia. The cardiovascular risks are based on a study comparing it with aldendronate and it is possible that alendronate is slightly protective, The study comparing cardiovascular risk with Evenity versus placebo showed no difference. These are the Arch and Frame studies. I have atrial fibrillation w/the stroke risk that comes with that and had no issues on Evenity.

People seem to do really well on Evenity, anecdotally.

I did Tymlos and then 4 months of Evenity for the boost in bone building at the beginning. Then Reclast. My friend had -4.5 in spine and had amazing gains on Evenity only.

There must be a way to find out whether Tymlos is good after radiation on nose and cheek- but maybe someone has something to suggest! Can the endo and oncologist talk?

ps 1 out of 5 radiologists would recommend radiation for me- so I didn't have it!

@windyshores , when you say one out of 5 radiologists would have recommended it, do you mean they would have recommended that you have radiation, or that they would have recommended Tymlos? Sorry to be thick.

I think I have decided that I firmly do not want to do Evenity after reading an article in Science Direct about an 80 year old woman who developed narcosis of the jaw after using Evenity. The article was very graphic and very scary.

While I realize that this is rare, Evenity has not been on the market that long, and so it's hard to know what the incidence rate will be in 10 years. In addition the warnings about the heart and clots was enough for me to discard Evenity.

So that leaves Tymlos. My endocrinologist felt that the radiation I had on my cheek and nose for skin cancer was a cause for concern, but so are fractures. So I guess I am going to try the TYmlos and hope for the best. The nose doesn't have a lot of bone, and I only had radiation on one cheek.

I hope I'm doing the right thing.

Thanks for taking the time to help me. I've been reading your comments and like the idea of starting at a low dose. As Someone who is very sensitive to medication that was a relief to know I could do that!

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.