Thursday, June 23, 2011

Two Musketeers and a Guy with a Wet Hacking Cough

Years ago, that was an entry on a David Letterman Top 10 list for "least favorite candy bars."   I remember the #1 entry was Johnny Bench's Nut Clumps.

Anyhow, I feel like that third guy and have for some time.  There was a bad cold going around the office, and my adorable little boy Carson was coughing, and it was just a matter of time until my immune system gave way.   I'm not complaining -- I've been very fortunate in that I've not been sick this year, I don't think, and considering both my kids and my wife have had the stomach flu and I was helping my poor son with his uncontrollable vomiting at 2AM, I'm damn lucky that I didn't get that.

So a bad bronchial condition that probably went from bronchitis to pneumonia is a mild issue, really.   I got a course of amoxycillin from the good folks at UAMS and that's more or less knocked it out.   I was out of Tamiflu when I first started getting the scratchy throat and had that not been the case, I might've knocked it out before it got bad.   Note to self: always keep Tamiflu on hand.

Minor problem with that: insurance doesn't cover it.   And it's about $100 for a 10-pill box.   Gulp.   So it's $50 to get rid of a bad cold quickly, essentially.   Probably worth it in the grand scheme of things.

Anyhow, it's on the way out now, though it's been here for about 10 days and I'd love it to be gone now, thankyouverymuch.

In other news, I decided to be a bit more militant about taking Ragalin -- an anti-nausea drug that supposedly also keeps the digestive track rolling -- whilst taking my reduced dose of Dex (down to 8mg a week).   I tried this the previous week and it didn't really help.  I still had the feeling that anything I ate from Wednesday AM was still in my stomach come Friday morning.  It's a rotten feeling, believe me. 

But this week, I took a Ragalin with Dex on Tuesday night, another one Wednesday morning, and another one last night and I don't feel nearly as distended and gross as I did the previous week.  Of course I'm also taking magnesium pills for the Revlimid-induced cramps, and the magnesium does ward off constipation brought on my the combination of antibiotics, Velcade, Revlimid and dex.    Incidentally what could be gently called "ward off constipation" on Tuesday and Wednesday night becomes "turns you into a booster rocket gripping the toilet seat for dear life" by Thursday.   But then these are minor things compared to the leg cramps so I've adjusted to the new normal.

15 more months to go, give or take.   Although frankly I wouldn't mind sticking on this stuff another year since the longer I stay on it, the more definitive the cure signature is.   I'm sure I could go off it after 3 years, since that's what BB says is enough.  Yet I also learned from my last dinner with BJ that there are people alive post TT2 and TT1 20 years later who are taking Thalidomide despite the fact that it's certainly lost its effectiveness.

I'll worry about abandoning my security blanket when the time comes.  As alluring as the final endgame to this interesting if undesirable match of GI chess has been for the last 26 months, I wouldn't mind saying goodbye to it!

Wednesday, June 15, 2011

Vanity, a caution against supplements and a thankful false alarm

Hello peeps.

It's my birthday today...43.  Since I was diagnosed at 40 and had no idea if I would reach 43, I'm a pretty happy camper, despite a grueling work schedule that has not permitted me much time for anything recently, including updates.

But yesterday, I had quite a scare for a little bit, and thought it was something that some of you might learn from.  Don't be me, basically!

I've counseled some friends going through myeloma treatment -- they know who they are if they are reading this -- that they shouldn't worry about silly little things like losing your hair.  Whether you want to pursue cure or control, effective treatment of progressive disease will at some point involve a transplant.  I say that with the knowledge of Dr. JB's position.  It doesn't change my opinion one iota.   And my comment to my friends is thus: hair grows back, the disease absent treatment will kill you, wear a freakin' hat for six months for pete's sake and deal with it.  It's not a big deal.

Having said that, one of the side effects of dex is weight gain.  I got pretty tubby after about nine months and two transplants and so I rededicated myself to eating better and drinking water instead of wine (some of the time!) and that helped, but I also started taking a supplement called 7-KETO that supposedly boosts metabolism.   This helped, I think -- or perhaps it was placebo effect -- but I lost about 20 pounds and have kept it off and while I'm not yet where I want to be, it's a noticeable improvement.   I know this because Dr. BB no longer says "let's call it what it is: you're fat!" when he sees me.  (Note: he actually said this, verbatim!)   Now, he says I look great.  And we know BB is honest to a fault, so there you go.

I checked with one of the physician assistants at UAMS before starting this supplement of course.  He was not familiar with it but I explained what it was, using the description of ingredients from Amazon, and he said it sounded fine.

Six months later and several re-orders of the pills later (taking them twice a day), I did a larger re-order on Amazon.  The pills arrived, and they were slightly larger and a different color.  I popped one and then decided to take a look to make sure they hadn't changed the formulation -- that the size and color were simply because they were a larger dose or something.

This pill, I was MORTIFIED to read, contained a large amount of green tea extract.  Now I know green tea is the one thing I'm not supposed to have since it's contraindicated while on Velcade.  But I thought it might inhibit absorption of the Velcade on the day of administration, or perhaps increase nausea or something like that.  So I did a little research and became even MORE mortified.   From Blood magazine, the mellifluously-titled publication of the Hematology gang, I learned that green tea extract appears to basically BLOCK the anti-cancer effects of Velcade.

My normally calm heart decided to skip a few beats.  Have I been taking pills that counter the effect of one of the primary reasons I'm hopefully going to be cured?   Have I mangled the maintenance program that has been delivering cures?  Is the data that I've seen now invalidated because I've basically been off Velcade FOR SIX MONTHS!!!???!!!

I called BJ and she was reassuring.  Green tea reduces efficacy of Velcade, and I should stop taking the pills, but I shouldn't panic.  BB said the same thing.   But with all due respect and love to them, they're not the ones who may have been not getting the benefit of the Velcade for six months.   So my level of alarm was reduced from panic to concern.

I then wanted to go to Amazon to see exactly how long I'd been taking this stuff.  And here's where things THANKFULLY turned out okay.  As I was going through my back orders, I clicked on one of them.  And it's VERY subtly different.  One (the one I've been taking) is 7-KETO.  The new one I ordered is 7-KETO Lean.   The only difference in the that the original does not include green tea.


Now I will probably stop taking ANY supplements until I am done with my treatment, because nobody knows what this crap will do to you, really, particularly if your body is dependent on delicate chemical reactions to kill certain cells while leaving others intact.    The only supplement I continue to take is UAMS-approved for neuropathy.  It's a compound of B vitamins called Metanx that has been shown to reduce neuropathy in Alzheimer's patients.  So I'm fine with that.

Other supplements be damned.  Sorry Margaret and Don!  :)     I'm all in with Western Medicine on this trip.   Not that I won't get some curcumin along the way as I like dishes prepared with it.  :)

Learn from me, people.  Be careful what you eat, and don't let vanity get in the way of your most effective battling against this disease.

And with that, I'm off to celebrate my birthday with Jill, drinking wine and not water...but staying away from anything with green tea in it.  : )