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Proof sub-q Velcade really works better for me!

Home/About Pat, Side effects, Therapy, Tips/Proof sub-q Velcade really works better for me!

Proof sub-q Velcade really works better for me!

Think that something as simple as how a medication is delivered can’t make a significant difference?  Wait until you read about this…

I would hope most of my readers consider me to be what one would call an “informed, proactive patient.”  But after what happened yesterday afternoon, one could argue not proactive enough!

Let me give you an example of how important it is to pay attention to–and be involved with–your own healthcare.

I have been taking Velcade by sug-q injection since my M-protein numbers started to rise after my stem cell transplant last summer.  Since I made the switch, I have noticed a big-time reduction in side-effects.

If you were to ask me last week, I would say around a 20-30% improvement in peripheral neuropathy (PN) symptoms–plus I’m not as stiff the evening after my infusion.

But like most people, I tend to forget how well a change is working.   Yesterday I was reminded just how well sub-q Velcade works for me.

Since I “went sub-q,” I only need an IV once a month or so for a Zometa (bone strengthening bisphosphonate) infusion.  Yesterday was the one day each month when I get both Velcade and Zometa.

I had not met my nurse before, but she did one heck of a job starting my IV.  So far, so good.   I was talking to another patient across the isle from me when I noticed she seemed to be flushing my line with saline before starting my Zometa IV.

I asked her to run the Zometa infusion rate a bit slower than the usual 30 minutes, since I wasn’t in a hurry.  I had learned–after almost five years–the slower the infusion rate, the less chance of side-effects.

Either way, Zometa or Aredia infusions have never bothered me much.  I would retain a lot of water after taking Aredia.  But no pain or sick feeling.  With Zometa, sometimes I feel a bit of bone pain.  But nothing like I felt last night or this morning!

It was late in the afternoon, so my nurse had left for the day.  I knew her replacement well.  Kathy worked that part of the infusion room regularly, too.  As she cleaned things up and I prepared to leave, I reminded her I still needed my Velcade.

“But you have already gotten it.” Kathy replied, a bit puzzled.  “That’s impossible!”  I said.  “I would know if I had gotten a shot or not…”

She reached into the trash and showed me the discarded syringe.  She also showed me the check-list the nurses use to double check when and how much medication is dispensed.

Saline?  Turns out my nurse was administering my Velcade dose the old fashioned way–by IV push.

It instantly became clear to me that neither nurse saw anything wrong with that.  After all, by giving me my Velcade dose that way, my first nurse efficiently saved me a “stick.”

Fair enough.  But what they didn’t realize is that Velcade isn’t just like most other drugs that doesn’t really matter when and how it is dispensed.

How do I know this isn’t the case with Velcade?

Oh my God!  Within 20 minutes after I left the clinic, my entire body was “buzzing.”  My muscles were stiffening up.  And my neuropathy was the worst I can ever recall!

Now I remember why I embraced sub-q Velcade!

And I’m reminded of it this morning.  I had a rough night last night.  My ankles and hands burned like they were on fire.  Even more disconcerting, I had “stingers” or hotspots in my neck and arms.  And instead of stopping at my knees, this new bout of PN now extends all the way up both legs to my hips.  I would have liked to lay in bed, but I was so uncomfortable I needed to get up and get moving.

And I just feel bad–and very tired.  Time for a dex pick-me-up!  Got to love this RVD!

My heightened awareness almost makes the mistake we both made worth it.

Notice I wrote “the mistake we both made.”  I should have reminded my nurse the order said sub-q.  I should have questioned her as she prepared to administer an IV push.

Of course, she should have known better, too.  But if we are truly going to take responsibility for our own healthcare, I need to take responsibility as well.

Little things can make a big difference!  And it’s my job to make sure things are done correctly.

Is that fair?  HECK NO!  But the example I just described isn’t unusual–at least by my experience the last few years.

Back to my opening premise:  Do I still believe that switching from IV to sug-q Velcade has helped cut-down my PN side-effects by 20-30%?  Nope.  I was reminded that it makes a lot bigger difference than that!

I won’t let one of my nurses make that mistake again.  Once is enough!

So pick a cliche’…  “Keep your head in the game.”  “Focus!”  Or how about “Pay attention, dummy!”

Whatever you need to tell yourself in order to help your doctors and nurses do the right thing.  After all, we are all part of the same healthcare team, right?

Feel good and keep smiling!  Pat