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Terrified of Bone Loss Drugs--what else can I do
Male, early 60s.
I had six months of Androgen Deprivation Therapy (ADT) for prostate cancer and my testosterone hasn't recovered a full year after stopping, and my estradiol is nonexistent (it's a 3).
I saw my oncologist the other day and he tried to pressure me into Reclast and even said I should stop biking because if I fall it's a huge danger. It's my favorite activity and I already gave it up for a year due to prostate cancer and am not going to give it up again.
I told him I will NEVER take another drug that lasts for months on end--I wasn't told ADT might not wear off and don't want to take the chance of being lied to again about a bone drug. Plus, I've heard Reclast can cripple you for months on end if you're unlucky and after two years of cancer treatment I just want to be myself again.
I continued working out the entire time I was in treatment: weightlifting, biking, hiking, yoga, swimming. I'm also taking large amounts of calcium and Vitamin D. Won't that be enough if I keep at it?
What are some of my other options? I *MIGHT* consider a pill if it had a short half life and could be stopped if I have side effects?
My numbers (T Scores)
Lumbar L1-L4 -2.4
Left Femur Neck -3.0
Left Femur Total -3.1
Right Femur Neck -2.6
Right Femur Total -2.4
Thanks!
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Welcome, @scottbeammeup. I am sorry to read of your cancer journey (I’m a survivor too 👊🏻), and am glad you made it through that.
We’re all here for the same reason: these bone building drugs and their potential side effects are really scary. I don’t blame you one iota for not wanting to give up biking. It’s the very thing that sustains you, I get it. And we shouldn’t trade quality of life for a drug.
I haven’t started a bone building drug yet. I started here just yesterday for the same reason you did: to get information and support. You’ll get both here.
My rheumatologist didn’t recommend Reclast for me (he wants me on Tymlos), so I’m afraid I can’t guide you there, but I think someone here will come along who will.
I am wishing you well, and will try to peek back here in the hopes you’ll get the info and support you seek.
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3 ReactionsI started on this journey back in September, after 2 Veterbal fractures one in last December T10 and August T8, still recovering from that. Due to my activing level Biking (you can check my Strava) and other sports no one saw this coming. I am 66 and have been racing bikes and Tri's for years. When I had the last fracture the Nerosurgen suggested that I get a Dexa Scan that is when I was Diagnosed with OP. This is not how I figured Retirement of my late 60's was going to be.
I have a T score of -2.9 Vertbrae and -1.8 Fermur. I saw several specialist and they all suggested Tymlos. I was very reluctant to go on a any type of Medication, I have never taken anything more that Vitamins.
I Started Tymlos 4 weeks ago and besides a headache one night, which I figured out that I was dehydrated, I have not had any issues!!
My plan is to continue for 2years and then re-evaluate.
I have been in PT and doing weight training which I will ramp up as soon as I recover from my back surgery and have started back on the trainer to start to build some fitness for next year to ride outside after the winter.
I am not sure how it will react due to the Cancer Treatment and ADT, but I would start and see how you react, you can always stop and go in another direction.
Focus on the succes stories, if you beat Cancer you can manage this!! See you on the road some day!!
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7 ReactionsHey Chris, as I read your story it brought to mind March 1 of last year when I broke my ankle out of the blue. It didn’t have anything to do with OP; in fact, the orthopedic surgeon was thrilled with my recovery. It was just a clumsy accident.
So I understand how a sudden broken bone messes up your life plans for months on end. And I’m sure the OP diagnosis sent you for a spin too.
You are SO very right about focusing on the positive Tymlos stories. I will remind myself, early and often.
May I ask: did you start at the full 80 mg dose? Have you needed to titrate up or down? Do you take it at night or during the day? A lot of women begin at lower doses, adjust accordingly, then move the pen up, which makes so much sense to me. It takes a little longer for the whole dose to get into your system, but once you get to 80, you’re used to the medicine.
My doctor did tell me to stay very well hydrated during the day before taking it, so thank you for confirming that for me.
The weight training in PT is extra wonderful for building your bones. You’ll be back on the trails in no time!
Great to connect with you here. Thanks for your positive messages!
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2 Reactions@beachesanddreams When I stated I was like everyone else, depressed and scared, I figured if I was going to start it, I would go all in since you can only take it for 2 years I wanted to get the maximum benefit and would deal with any side effects as they come. And as I had stated didn't have any. I do take it around 4-5 in the afternoon, but may start to take it later in the evening due to travel and just busy during the day.
Thanks for the reminder, stay positive!!
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2 Reactions@chrisdietrich I’m happy you’re doing so well on it, Chris. Please continue to share your positive journey so that it will not only inspire others, but perhaps lift some of the fear surrounding this particular drug.
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2 Reactions@scottbeammeup the alternative of not taking bone protective drugs is possibly falling as you age and breaking something. Healing as we get older gets harder. I hope you do some investigating about how the drugs work before you say a hard no. I am not aware of anything that has proven as effective as biophosphates have.
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