Osteoporosis online summit...

I want to jump in today with a last-minute post to let  anyone who might be interested in learning about Osteoporosis and natural approaches to dealing with it, know about a free online Osteoporosis Summit this week.

I've written more below, but here is a link if you want to just go check it out now:

Osteoporosis and Bone Health 

Online Summit

Why am I sharing this?

In November of 2023, after I had mostly recovered from chemotherapy for breast cancer, my oncologist ordered a DEXA scan for me.  I'd never heard the term DEXA before that, and I had no understanding of why one was being ordered for me.  It is not normal for me to not question a test - especially something I'd not heard of before, but at that point I'd gone through so much medical surveillance, diagnostic tests, and treatment (most of which I've never written about here) I just nodded in acceptance that this was the next thing on the "cancer conveyor belt". 

I may write in more detail someday my processing getting an osteoporosis diagnosis, but I'll just say now, I was shocked to find out I had osteoporosis in my spine.  When I started doing research on it, I was dismayed (actually angry - I'm still angry) that this topic is not adequately discussed in our culture, or even in the medical community.  My endocrinologist, who I'm presently seeing for surveillance of and maybe (in the future) treatment for OP, was the first person to say to me that the medical community does not do a good job educating people about osteoporosis.  She seemed surprised at our first meeting how much I already knew about osteoporosis and the medications she could offer me. 

My continuing research and conversations with people my age and older only confirms that most of us (including general medical persons) are woefully undereducated about a condition that can affect as many as 30-50% of us - men and women.  

Which brings me to the point of this post.  Having watched many of the video presentations in the Osteoporosis Summit last year, I highly recommend it to anyone - especially, if you have a new OP diagnosis, and don't know where to start learning about it.  Or maybe you've had OP for years, but you want to understand it better.

Things I gleaned last year:

A understanding about bone metabolism, and what osteoporosis is.

The many things that can cause osteoporosis. Not to scare anyone, but being lean is actually one risk factor.

Information on what tests one should ask for when considering treatment.  Some of these tests will show whether or not there is a secondary cause of OP, and may point to potential treatments that are not drugs.

The importance of improving and/or maintaining balance and muscle strength as we age.

Exercises for balance as well as for possibly improving bone density.

The significant relationship between muscle strength and exercise and bone metabolism.

And, perhaps most of all, I came away with hope and an idea of how to proceed - whether I chose medical intervention, or decided to try natural approaches.  My fear of fracture was replaced with a bit of optimism, and a determination that fear would not keep me from doing things.  

That said, I take things like ice and tripping hazards very seriously now.  I don't walk through dark rooms now if I can help it.  I'm also continuing to try to improve my posture in everyday activities.  I never really thought of myself as a slouch before, but I've come to realize how much I do slouch, and how easy it is to slump into poor posture when doing just about anything - especially when sitting.  Learning that simple slouching can lead to spinal fractures in someone with spinal OP has created hyper posture awareness in me. And still, I catch myself slouching. 

My caveats about the summit...

By signing up for the summit, one is giving permission for their email address to be shared with all the presenters, and agreeing to receiving promotional emails.  To be honest,  I received a few promotional emails from some of the presenters last year, but it was easy to unsubscribe from those I wasn't interested in.  That said, I do suggest using a "junk" email account.  I think everyone should have a junk email account anyway, just to protect a main account from becoming burdensome with inevitable unwanted email.

You will also receive some emails encouraging you to purchase ongoing access to the summit.  Each day's presentations are only available for free for 24 hours, and when the whole week is passed, it's over, and there is no more access to anything.  

And lastly, not every presentation is going to be everyone's cup of tea.  There were a couple of presenters that I thought were a bit "woo-woo", but for the most part, presenters were professionals in various fields who speak from their experience and education with helping people with osteoporosis, and some dealing with it themselves.

Am I benefitting?

No. I am in no way benefitting from promoting this summit.  

My advice is to not make any purchases at all in regards to this summit.  My guess is, if you're interested later, the offers will still be available. I believe they were offered for at least a week post summit last year.  I have not purchased anything to date.  That said, I did recently purchase Keith McCormick's book, Great Bones, off of Amazon.  MY introduction to Keith McCormick was this summit. 

I will not benefit in any way if someone reading this post, participates in the summit, or even just checks it out.  I am simply passing along information and my experience with this summit last year.

And that's all.  Now I'm off to listen to my first presentation today.

What's in the old noggin today...

I've started this post several times in the last few days.  I have so much swimming in my head, every time I sit down to write, way too much starts spilling out.  This is just an introduction to what I've been mulling over recently.  Over the last month or so I've been immersing myself in researching how to manage and possibly improve osteoporosis.  

In November, I mentioned receiving a diagnosis of osteoporosis [OP] in a section of my spine after my first ever DEXA scan.   Having any amount of OP is hard news, and I didn't see it coming at all.  Then it felt like a double sucker punch to learn on the heels of an OP diagnosis that the aromatase inhibitor (endocrine therapy) I've been placed on for 5-7 years is known to diminish bone density.   

An aromatase inhibitor [AI] is prescribed to reduce risk of breast cancer recurrence - which is great, but sacrificing ones bones to reduce the risk of cancer recurrence seems an awfully steep price to pay.   "Not to worry", the doctor says, "there are medicines for osteoporosis too!"  Aside from the fact that OP drugs have some worrisome side effects, managing medicines that manage the effects of other medicines is not how I want to spend my "golden years" - if I can help it.  

I will meet with an endocrinologist in the spring, to see what she has to say.  On one hand I'm glad to have this appointment on the calendar, but on the other hand, I'm not thrilled with the drugs that will undoubtedly be recommended to me.   For now, I'm doing what I can do - in terms of making some lifestyle changes, and increasing my understanding of how exercise, nutrition, and yes...  possibly even drugs, may be used to get me to a better place with my bones.  

Since doctors don't have time to explain everything a patient needs to know in order to make a truly informed decision about treatment, I suspect the internet becomes a main source of information for a lot of us.  While the internet is a marvelous thing, it is not without its problems.  I am, first of all, very wary of anyone and everyone who has a YouTube channel and claims to be an expert.  It's an interesting time to live in.  So much information at our fingertips that we can avail ourselves of to improve our lives, but at the same time, the danger is great of falling prey to cyber snake oil salesmen and women.   Or following poor advice from well meaning and good people.  

I'm grateful for the people who share their experiences, and even medical expertise, online, but I try to be smart about consuming what is out there for the taking.  I research (or at least attempt to research) further anything that catches my attention and sounds like it might be helpful.  The internet was very helpful to me last year during the diagnosis and treatment of breast cancer.  It allowed me to dive deeper, to understand and trust the procedures done and treatments I received.  I'm hoping it will benefit me in this present situation, too  

I have found it helpful and rather amazing that the internet puts at our fingertips digital libraries of trials and research studies.  Even individual case studies can be enlightening.  We joke about consulting Dr. Google, but seriously...  Google is a powerful tool that, while it can drive a person insane with too much information, it can often help a person discover a solution to a difficult problem. 

Mostly, the internet has served me well.  Recently I stumbled on information that compelled me to approach my oncologist (just this past Monday) and ask him if a different endocrine therapy - that may actually help bone density - could be an option for me.  While he prefers an aromatase inhibitor for me, and frankly, I would too if it weren't for the bone density issue, he was agreeable to me trying the other (older) therapy.   In fact, in the notes of the encounter, was written that this switch was reasonable in light of the recent discovery of OP.  The older SERM therapy (in this case, Tamoxifen) is still widely used, and is considered great therapy for reducing breast cancer recurrence in pre-menopausal women, but aromatase inhibitors  have become the preferred therapy for post-menopausal women because AI's are a bit more effective, and they hold fewer potentially dangerous side effects for older women.

Having weighed the possibility of a terrible side effect of using SERM therapy with the pretty much guaranteed loss of bone density with AI's, switching to an endocrine therapy that won't harm my bones feels like a reasonable trade off.  And I can relax in the worry department while I wait for my endo appointment, and use my time and energy more productively, namely focusing on nutrition and exercise.   

It's possible (maybe) that the endocrinologist will ease my fears of osteoporosis medicine - even though I, personally, have big reason to be more concerned than maybe the average person does about one potential side effect in particular:  Osteonecrosis of the Jaw [ONJ].  It's not helpful to read that ONJ may be considered a rare occurrence if you fall into a category that makes you more likely to experience it.  I see my dentist later this week.  I will be interested to see what he has to say about it.  

For now, I'm relaxing into the relief I'm feeling because my oncologist heard and responded to my concern. And I feel empowered and motivated to continue to try to improve my situation, rather than helpless and rather hopeless like I was feeling about it over the last few weeks.

This week, I'm watching some of the presentations in a temporarily free online summit called Natural Approaches to Osteoporosis and Bone Health.  It has been interesting.  [I've removed most of the paragraph I wrote about accessing the free Summit because that is not pertinent at this point.]

I'm finding some of the presentations interesting, and oddly...  one of the main presenters, who recognizes the potential pitfalls of osteoporosis drugs, gave me insight and hope that this kind of drug may be safe enough for me to feel comfortable using for a short term.  It gives me something to discuss with the endo, at least.

Thanks for entering into my brain again.  Sometimes I just need to do a dump of all that's swimming around in there.  Though, to be sure...  this was more like a dribbly overflow of all that's sloshing around in my head at the moment.