DRY BONES, RUNNY NOSE, WHO'S THE BOSS

My allergies were calm this morning just long enough for a question to rear its ugly head.

I've been checking the calendar so I won't miss the Prolia inj at the end of this month.

And I actually want) to take the next bone density test, but secretly plan it for after Prolia inj #4 has had a chance to work.

The question I shouldn't face right now is:  What if that right hip isn't better?

I've always been sure that I believe in Prolia.  But there are plenty of things patients and doctors believe in that turn out to be.....not infallible.)  I like Prolia, because I am impressed with how it works in the body.  Short version - it does its work and then goes away.

The pills on the other hand grip onto one's bones and may be hard to dislodge.  Like Bondo on a hole in your car (ask your boyfriend.  He may give you a lecture on cars, but he'll probably like that better than a plate of pancakes.  Okay, enough on Bondo.)

The doctor has already hinted that because I already had osteoporosis when I started Prolia, I may have to take more Prolia than these four shots.  Will I do that?

This question will not be answered until Prolia shot 4 has had a chance to act, and the density test results are out.  Probably in August.

Now my fear of authority figures is in play. He's the authority figure here. I feel guilty if I wait for the density test.  And  I still tend to think that if the doctor wants more Prolia, I'll have no choice.   That can be a dangerous attitude for a patient to get.

This was going to be a 3-sentence post.  Oops.  At this moment I don't know.  If the hip isn't better, I may agree to more Prolia.   Not because he's an authority figure, but because I trust him and want him as my doctor.

I still remember that first day in his waiting room when the woman said, "You have the good doctor!"

Prolia vs Teeth - Damned if I do, damned if I don't

I have never broken a bone. My spine, however, is bolted together in one place.  Many of my teeth have been filled or pulled or altered.  I came to TX with a broken tooth - since repaired. Then, after I'd been here for awhile, I woke up one morning with a sliver missing all along the side of a front tooth.  The dentist fixed that.

My new doctor sent me for a DXT  (no injection) bone scan.  My spine could not be scanned because of the bolts. Results: Osteoporosis in my right hip.  Not the worst, but definitely osteoporosis.

Six months ago, I reluctantly started Prolia to treat that osteoporosis and some osteopenia (almost osteoporosis) in the other hip. (My oncologist doesn't like the pills, and I can't swallow them for medical reasons.  Besides, don't like the way they act inside us.)

 I liked some of what I read on demosubab (Prolia.)  Like the fact it doesn't hang around in your system - is nearly gone at the end of the six months.

The first six months on Prolia haven't seemed to do me any harm.  But recently, almost  time for a new shot, some gum soreness. It took two dentist visits to discover a broken tooth in my upper jaw. Dentist removed the broken portion.

With my record of dental problems, I can hardly blame Prolia for that break,  And yet.  And yet...

The oncologist was not happy about that broken tooth--said I should check back with the dentist, who already knows that I have doubts about Prolia,

I left a message for the dentist.  He called me at home!  And asked if there was something less strong than Prolia that the onco could give me. No.  Turns out dentist has a patient on Prolia with an infected root canal. He will "carry her along with antibiotics" until the current Prolia cycle is finished.

I called him back for specifics:  If I get an infection in one of my root canals, I will get the same treatment. When that cycle ends, as long six months, he will remove that tooth.  I asked if he is reassured by the fact that none of my root canals has ever been infected. He wasn't enthusiastic. He insisted I get a note into my onco file saying that I have had several root canals.

The Prolia leaflet clearly states

 "Prolia is a medicine that may infect your immune system." 

Today  I may ask for an appointment with the dentist to check on a cold-sensitive tooth I've noticed for awhile, and the gum above my bridge.  I wonder if I'm imagining gum sensitivity there (I've known for years that stress can make my gums hurt.) Yesterday, I drank tea twice (more about that later). Today gum feels better. Will drink more tea.

Tomorrow I have a rush appointment to discus this with the oncologist.  Then, depending what they both tell me, I will decide to take the shot, or not.

If I get it, I suspect this second shot will be my last.  This stress is messing me up.

This seems so minor compared to the oncology waiting room full of very sick cancer patients.  But losing another tooth or part of my jaw (or the other side effects) does NOT feel minor.

Yes, it feels like like Damned if I get it, damned if I don't.

I have very few real statistics on how often denosumab failed on some women's bones.  I found this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3387828/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3387828/

Long-term treatment of osteoporosis: safety and efficacy appraisal of denosumab
Athanasios D Anastasilakis,1 Konstantinos A Toulis,1 Stergios A Polyzos,2 Chrysostomos D Anastasilakis,3 and Polyzois Makras4Author information ► Copyright and License information ►  

Yes, some prolia patients now have more bone density.  Do I?

The most annoying part?  Medicare will almost certainly not pay for my second bone scan for another year.   So:

 We don't even know how well, or if, this stuff works on me.

 I wish  you health.

PS Tune in again later for my new, no-stone-unturned tooth care program.

OSTEOPOROSIS, PROLIA & WHY I DON'T TAKE THE PILLS

After seeing my bone scan, my primary doctor said she was going to prescribe the pills, and if I couldn't take them, she would send me to someone in my area to get the shots.  The prospect of a new doctor who knows nothing about me, and who seems to mostly give shots, makes me want to run.

I have inherited significant sinus irritations that can fill my throat for weeks with heavy mucus.  As a bonus add to that a hiatal hernia that keeps things slowed down in my esophagus at times. Both problems are good reasons not to take the pills.

The decision was simplified when I told my oncologist I didn't want the pills, and he told me he doesn't allow them for his cancer patients. (I'm a patient even tho the DCIS is supposedly cured.)  And so I spent weeks of digging through the web for serious statistics on Prolia.  They were not comforting.  What comfort I got these past weeks was his tireless reassurance that no one in his whole group has seen any signs of the horrid side effects we read about.

I hit a snag when I found that patients with a certain side effect of bone meds were being sent to my dentist for some jaw repairs.  This stressed me out, and I don't even know if those people were on the pills or on Prolia.  I don't know if they already had dental problems.

On the other hand, there are reasons for me, especially, to take some meds for my bones:  I have foot problems that can interfere with weight-bearing exercise (more about exercise later.).  And, my lower spine could not be scanned for density because of screws from a lumbar fusion.

So in three days, I'll be in the infusion room (I've even been afraid to Look in there.)  Luckily, that room is really part of my oncologist's office, so I'll be in a familiar place with people who can reach him if I have a problem. That's comfort.

 And then we'll see.

I wish you health.