Living with MCL

As many loyal readers of my blog already know, I pride myself in the fact that I take no medication of any kind, not even an Aspirin. (Although in extreme emergencies, such as the bicycle accident I had about a year ago, I have taken an antibiotic and an NSAID). But for the past 3 days, I have been sick. Nothing major, but I have been sneezing quite often, my nose is runny and stuffy and I have a minor headache.

I don’t really feel that bad, except for the headache, but what bothers me is, I don’t seem to be improving.

My aunt keeps asking what I am doing for it, to which I reply nothing, and Edie points me to the Benadryl, and says it won’t hurt to take a few Advil.

Well, I’m not so sure about that, but I did break down (or maybe I should say, I designated this an extreme emergency) and took two Benadryl last night.

Although I did get a good nights sleep (went to bed at 6 PM awoke at 6 AM), it didn’t really help much. All it did was dry me out totally. My mouth was very dry, and I couldn’t breathe through my nose at all. I doubt I will try that again.

But I have also succumbed to the pressure by taking two Advil, about an hour ago, in the hope that it may help to mitigate the headache.

It hasn’t helped yet, but I am hopeful!

I really doubt it, but what happened this evening, after I got home from my golf Men’s Club meeting, just warmed the cockles of my heart.

Shortly after getting home, the Emergency Department at Kaiser Permanente called in reference to my most recent blood work, I had done earlier this afternoon, in preparation for my appointment with my doctor tomorrow morning.

They were aware of the fact that I had lymphoma, but still called to report my White Blood Cell (WBC) count was 81.9 with 98% lymphocytes.

I was shocked, not only because 81.9 is about 20% lower than it was last month (which is a good thing), but with the fact that they bothered to call at all, and that they were concerned with the possibility I may be having a fever or chills or something else.

My guess is it’s actually an error, and my WBC hasn’t dropped 20%, but even if it is an error, I thought that was very nice of Kaiser Emergency personnel, to take the extra time to review the report, and call me. In my opinion, that is above and beyond the call of duty, and service I doubt many other health care providers would have provided.

That, plus the fact that I won $20 at the meeting this evening, is making the start of 2007 look better and better.

Cross Posted at My Journal

If you look at the bottom of previous post, you will see that the “Posted on” section is indented somewhat, when it should be aligned on the far left side of the page.

Every other post is correct, but the previous one isn’t, and I can’t figure out why.

So I am doing this extra post, because it bothers me so. I just have to know if it is a one time issue, or if the theme has some how been corrupted.

Fortunately I haven’t needed treatment yet, but that doesn’t stop me from thinking about all the potential treatments that are available to me.

What seems to be recognized as the one of the most effective treatments for MCL, is a protocol known as HyperCVAD. Without going into too much detail, I’ll just say the treatment is so severe, you have to be hospitalized for several days at a time when receiving the treatment.

CHOP is another treatment, similar to HyperCVAD, but missing a few of the more potent drugs which necessitate the need for hospitalization. Still CHOP relies on Doxorubicin (the H in CHOP for Hydrodoxorubicin, or the A in HyperCVAD for Adriamycin), which is known to cause heart problems, and because of that is lifetime dose limited.

I refuse to take that drug, for obvious reasons.

Another lesser choice is a protocol known as CVP, which doesn’t include the Adriamycin/Doxirubicin. Still it includes Vincristin/Oncovin (the V in HyperCVAD or O in CHOP), which while Edie’s oncologist calls it the closest thing to sugar water, as chemo drugs go, it is one of the few drugs known to cause irreversible neuropathy.

There are other potential treatment protocols available, but as you might guess, have their own unique problems, which I won’t get into here.

As you might have surmised by now, while there are choices, there aren’t many good choices.

Then just this evening, I learned, what I thought was my best possible choice for a treatment, with the least possible side effects and potential problems, has it’s own problems.

That treatment, single agent Rituxan, which I had pretty much set my mind on as first line treatment, when the time came, has it’s own problems.

According to the [FDA], people taking Rituxan may be at risk of developing a severe viral infection called Progressive Mulitfocal Leukoencephalopath (PML).

……..

The condition is caused by a virus that destroys the sheath that covers the nerves. Symptoms include mental deterioration, vision loss, speech disturbances, and movement abnormalities or paralysis.

That’s just great!

Now on top of potential heart problems, irreversible nueropathy, and countless other problems, the potential for paralysis, vision loss etc. is a possibility.

Doesn’t the bad news ever end?