Five years...the first of several posts on the topic

I'm sitting at my desk right now.  It's a sunny October day in southern California and the sun in streaming in.  The desk is a pipe of papers.  The scene is very much like it was five years ago.

Five years ago, essentially to the day, my primary care physician called me to tell me that he observed high protein in my blood.  I had no idea what it meant.  I'd been on a moderately high protein diet for some time, was that what he meant?  No, he said.

I'd been on Lipitor for some time for genetically high cholesterol.  I don't like needles (irony alert) so I'd avoided the required blood test for about a year.  Lipitor is hard on the liver and to make sure everything is still working, they want blood every 90 days.  I'd avoided it as long as I could, when my primary care doctor told me I had to man up and get the blood drawn or he wouldn't renew the prescription.

I went in, they did bloodwork.

Two days later he called me back to give more blood, only saying he wanted to run one test over.

Two days later he called me back to tell me about this protein.

He said it was unlikely, but it could be one of two things.  One is called MGUS.  And he said it was VERY unlikely but that it could also possibly be something called Myeloma.

I said "anything that ends in Oma is bad."

He chuckled.  He said "it's a malignancy of the blood, but not like Leukemia or anything like that."   To rule that out and just confirm that this was nothing (or MGUS at worst) he wanted me to see a Hematologist.  I made an appointment.

I was still blissfully unaware.

That night I called my longtime best friend Dr. BM, who was considerably more concerned.  He said people die from Myeloma.  That didn't sound very good at all.  But I wasn't worried.

Silly me.

More to come.

But...five years later, here I am.  In complete remission (we think...that stupid marker in my blood has me nervous even though there is other data that says I shouldn't be).  Surviving.  I've been through a lot.  The treatment has derailed my career, if only (hopefully) temporarily.  It's left me tired, poked, prodded, and more familiar with the inside of a MRI machine.  It's gotten me up close and personal with those needles I didn't care for -- and still don't.  I've learned what I can from it.  I'm still here.  But all in all, this has really, really sucked.

I guess we call that perspective qualified optimism.  It's the best I can muster.  My frame of mind relative to pre-diagnosis is hard to put a brave face on.  My frame of mind relative to diagnosis and prognosis, I assure you, will be more positive.

Interesting reflections.  And more to come.

Interesting publication on benefits of transplant

I rarely re-post other articles -- there are other blogs for that sort of thing.  But this one struck me as important.

There has been considerable debate about whether or not novel drugs alone versus novel drugs plus transplant would achieve the same outcomes.  Dr. Berenson in Los Angeles, to name one vocal proponent, believes this to be the case and that there is no benefit from transplantation.

I've not dug into this study other than to read the abstract, but it does show that overall survival and progression-free survival were both superior when transplantation was part of the regimen.

Bear in mind, as well, this was a single transplant.  Tandem transplantation should be superior still, if in fact this data is accurate.

Food for thought.

Note: some considerations with respect to the study: we don't know if the non-transplant patients were transplant-eligible, we don't know if the type of disease (IgX, kappa vs. lambda, and most importantly risk assessment) was evenly distributed, etc.

Still, while maybe not as statistically significant as we'd like, it's at least a data point, even if anecdotal.

I will likely ask Dr. Paul Richardson about this on this week's CurePanel talk on the 24th of this month, where the topic is "To Transplant or Not to Transplant."  If you have any questions you'd like me to ask, please let me know!

The Strep That Wouldn't Die, and other stories. Or other story. Or question, really.

So after being symptom free for a few days I woke up yesterday with a painful sore throat again.  Took a Vicodin immediately, and a Tamiflu, and a Keflex.   Went to my morning workout.

Then I felt nauseous.

Great, I says to myself, I says.

I called my primary care doctor and told him what was up.  I didn't know if I got the same thing AGAIN, or if I didn't get rid of it the first time, or what.   I got in to see my doctor a few hours later.  Supporters of the ACA, remember that sentence in a couple of years -- you probably won't see it ever again.

I digress.

Anyhow, the doctor thought because of the stomach issues I originally had that it was probably a virus, but he did a swab for strep anyway.  Told me to see what happens and go back on the Keflex.  He was surprised that it had responded as quickly as it had before, and this, too, led him to believe it was a virus.

Long-story short, it was strep.  Probably stuck around because I didn't take the full course of antibiotics.  Stupid me, took about three days worth and when the symptoms ended, I figured I didn't need any more.  THIS WAS DUMB.  Take the full course of antibiotics.  I feel like a putz because (a) I didn't get all-the-way better, and (b) those superbugs that are resistant to all antibiotics and will eat through steel and become sentient and take control of the world's nuclear weaponry and hold us all hostage unless we come up with money are being strengthened by (1) the use of very powerful antibiotics to treat stuff that would respond to less powerful stuff, and (2) people like me who stop using something before it's all the way gone.  I'm sorry world: I vow to do my part from here on out.

As for the nausea, that was likely just taking those drugs on an empty stomach and then working out.  I usually don't need food to take stuff but I think the combo of the three may have been enough to tweak my innards.  Blech.  Anyhow, false alarm, thankfully.  After two solid days last week of projectile vomiting that would have impressed William Friedkin, I'm glad that didn't come back.  Although I was kinda looking forward to dropping these last five pounds...

God bless the good people of Arkansas, including BB and BJ, who responded to my email immediately and were prepared to sync up with my doctor out here.  I also got a long list of tests to run on my blood which attests (no pun intended) to UAMS' thoroughness and emphasis on prolific testing, which I love. As it turns out, they weren't needed in this instance.  But I was ready to get tested for everything from Parvo (sounds gross) to salmonella to feline distemper to Gumbo Limbo virus.     The last two are not serious.  In fact that last one came from a google search I just did for "funny sounding virus names."   Turns out there are a LOOOOOOT of viruses out there, folks.   See for yourself if you are astonishingly bored.

Now, as for the other story / question.   My friend EW commented in the last post that I should get a flu shot.  My primary care doctor suggested this, too.  The traditional wisdom from UAMS is that a flu shot in my current state (or perhaps recent stake) is useless as my immune system won't mount an immune response, and that was probably true for a while.  But my CD4 count is 510 now, which means it might actually do something, and my PCP said "better to have a muted immune response than no immune response."   So I guess when flu season starts up, I'll get a shot.

Maybe.

I still like Purell and Tamiflu, personally.

How a simple cold turns into hell with a compromised immune system

Hello friends.

So there's been a little bug going around.  Seems some people have a sore throat which then turns into a cold in some people if they haven't fought off the sore throat part.

That's what happens for people with healthy immune systems, that is.

Me, not so much.

I report this not for sympathy but because it could be of value to people assessing the response of their own post-SCT immune system.

I have been enjoying a pretty healthy last few years -- I don't think I've had a cold lasting more than a day or two in two years time.  I attribute this to taking Tamiflu the second I feel a tickle in my throat.  90% of the time, if I feel this coming on and get in front of it, the feeling is gone the next morning.   Maybe twice in two years (if that) it's turned into a cold that has gone away in a couple of days.   If I feel a tickle in my chest, I take an antibiotic (usually Amoxy-Clavicin) designed to wipe out respiratory infections.  I do this because when I first had my SCT, any sniffle turned into six weeks of bronchitis.  I spent my first year sick probably 60% of the time since it took so damn long to recover and as soon as I did, I'd get sick two weeks later.

Anyhow, through use of Tamilu, Amoxy-Clavicin and more importantly Purell, I've been pretty healthy for the last couple of years.  Enough where I must have gotten complacent.

I flew up to San Francisco last weekend to celebrate my mother's 91st birthday.  I didn't use Purell and came into contact with the germs of whatever parade of deranged, disease-ridden folks had used the airline seat before me.  Without thinking, I probably ate peanuts or pretzels on the flight which means germs went from the arm-rest to my hand to the peanuts to my mouth.  That's how colds get spread.

Sure enough, Thursday night I felt a tickle.  I sourced some Tamiflu from a local pharmacy and popped a pill.  Friday morning I felt okay, maybe the same tickle.  I figured worst case it would go away in a day or two.

Oops.

Saturday morning I got up to have breakfast and after two bites of an innocent egg white omelette, went to the bathroom for some violent vomiting for about 10 minutes.  I was supposed to meet an old college roommate for a lunch or a drink so I trudged along, sat down, had an innocuous mimosa (so I thought) and a small fruit plate.  Bad idea.  More violent vomiting.

Maybe some fresh air would help.  I had a sip of water (no more food or anything else, I finally determined) and walked for a bit.  Bad idea.  More violent vomiting.  On the street.  I felt like a heroin addict.

Got a car back to my hotel.  Went up to my room.  You guessed it: more violent vomiting.

About the time that I realized this was stomach flu and not just food poisoning is around the time that my throat felt like it was being slashed with a straight razor every time I swallowed.  I'd had that feeling before once or twice in my life...strep throat.

Yep.  A simple bug that wouldn't be anything went to town on me and manifested as stomach flu PLUS strep.  I flew home and got into bed immediatley, and tried Levaquin -- a carpet-bombing antibiotic -- and that didn't seem to help.  I was having to take a strong Vicodin (the 10mg of the good stuff plus 325mg of acetominophen) every two hours just to take the edge off the pain.  I was actually considering dipping into my remaining Dilaudid -- the pain was THAT bad -- and because I was worried about the amount of acetominophen on my liver.  Before doing that, though, I called my PCP who told me that Levaquin is a great general use antibiotic but isn't great for strep throat.  He put me on Keflex and about eight hours later the pain in the throat finally abated.  This was, lessee...Monday.  I went from probably ten Vicodin on Sunday to two on Monday to none on Tuesday (I'm not addicted to opiates, thank God -- was very easy for me to not take it).   As of now, things are downgraded to a mild chest cold with no symptoms other than coughing and respiratory congestion that will clear up in a few days, I'm sure.

Not a lot of fun.

The moral of the story: be ever vigilant, and use Purell!