End of First Month Results 8/20/07

I went by the Cancer Center today to sign a form so I could get the next round of Revlimid and pick up the results of my blood tests which were done Monday. My M-spike hovered at 1.9 g/dl for over a year then two months ago moved up to about 2.2 g/dl for two months. After 21 days of Revlimid/Dexamethasone the m-spike is 1.3 g/dl which is not normal but is on an encouraging downward trend. Hopefully that will continue but it is too early to get too excited about that yet. I am just very thankful and encouraged at this early response.

I am going to give the recent results my own rating of immediate positive response. Immediate because I am sure there are some folks who's m-spike doesn't move at all the first month and maybe even goes up some. Some people stay on this medication for months before they see any change. Even though the number moved in a negative direction, that's the way we want it to go so that is positive. I would like to see the m-spike go to something like .5 g/dl or whatever it would take to declare me in a state of complete response.

Revlimid & Dexamethasone Same Song Second Verse

Well, I started on my second round of drug therapy Wednesday (three rounds per month) and 40 MG Dexamethasone this morning which continues to be shall we say, interesting. In case you might be curious about immunomodulatory cancer drugs, here is a link to a superb description of how Revlimid works.

http://www.multiplemyeloma.org/treatments/3.08.02.php

This web site is sponsored by one of the supreme Multiple Myeloma research oriented charity groups and you will notice the low dose Dexamethasone regimen was initiated by researchers at Mayo Clinic, one of the superlative Multiple Myeloma treatment centers. But then I am somewhat biased.

Very often, people will ask me how I am feeling. I notice old (and I mean really old, not just old like me) people will ask each other that. I suppose it is still new to me and I don't always know how to respond and am usually pretty much not willing to discuss it. But I have noticed people in their eighties seem to be appreciative of the inquiry. It's almost as if they amaze themselves that they are still around and more or less appreciate the interest. An appreciation that grows out of many lonely hours and an opportunity to tell their story and share the misery with someone who can genuinely empathize and respond in kind and they will. That's what it is all about, trading up and staying even. After all, no one wants to lurch out ahead in the aging race. You have to have some way to gauge your progress in relation to your peers. So you look forward to that question about how you're feeling.

When you are my age, you just want to keep up the status quo as much as possible - the aging thing is only beginning to sink in so you want to keep pushing it out there all you can while you still can because somehow, you know the day is coming because you have had a few of those days already. Miniature wake up calls. Maybe not anything too serious but still something that tells you it's coming. So you just blow it off and pretty much tell people everything is okay in sort of an off handedly semi-offensive sort of way. Not with an air of appreciation at all. But it is coming if you hang around long enough - the appreciativeness.

I usually discuss how I feel with my doctors in great detail. Even they get that glassy eyed stare on occasion. Most people don't really want to hear about how you feel in great depth except to have the opportunity to bleed back on you in turn. Most folks want the AFLAC duck treatment - short and sweet. Yep, I'm doin' all right. Just fine, thanks. Pretty good. Not so bad (now that is a real good Minnesota response). Not so bad. Could be worse. Fair to middlin'. Fine as frog hair split four ways with a dull knife by a one armed, one eyed nervous person.

One thing I have noticed after being on Rev/Dex for a short time is that the bone pane I was having intermittently almost all the time has come to a screeching halt. I am hoping that is a good indicator since my doctor at Mayo seemed to think it was an early indication of progression none of the tests reveal. That may be the result of the anti-inflammatory effects of the Revlimid and Dexamethasone.

You might be interested in how Dexamethasone feels though so I'll fill you in a bit since I am obviously in a gabby mood (another attribute of Dexamethasone). It may not seem like much of a big deal that Mayo Clinic came up with a low dose regimen. Low dose is 40 MG once a week. Standard dose is 40 MG a day for four days every seven days. That comes up to 160 MG per week. Believe me when I tell you, 40 MG produces a significant effect. 160 MG produces a train wreck by comparison. It is almost unbearable. Dexamethasone revs you up on the up beat then drops you in a deep dark hole on the down stroke. The up side is higher and more sustained with standard dose and the down side borders on depression.

The revving up you get from Dexamethazone is a lot like a Caffeine high but without the nervousness. You experience the wonderful sense of intensity that allows you to pour over a book or analyse a situation with undying fervor which later on seems to be somewhat misplaced. You find yourself talking incessantly if someone is unfortunate enough to accidentally lock horns with you in a conversation.

After the rev starts winding down, just the opposite happens. No talking please. No questions, no nothing any more than is absolutely necessary. There is the temporary weight gain due to water retention and all the salt in the food you can't seem to get away from. There is the intestinal gassss and bloating, constipation, sleeplessness, danger of blood clots, increased heart rate, increased appetite, reduction of inflammation, blood sugar problems, fun, fun, fun, 'till daddy takes the t-bird away.

Then, if you are lucky and get to be on the low dose regimen, all that has about four days to disappear completely until you start all over again. This is the price I gladly pay for a chance at knocking my disease back a few years. So, in case you might have been curious how it feels, that is a partial description. There are nuances I am sure I have overlooked but that is pretty much it in a nut shell.

Thanks for stopping by!

Revlimid/Dex 8/1/07

Well, I start taking the big Revlimid/Dex plunge today under the sponsorship of my insurance drug benefit to the tune of $6,781.65 a month for four to eight months in case you might have been interested in how expensive cancer drugs can be. This is a new drug which is offered to patients who have undergone at least one course of treatment in the past. It is the most effective drug available at this time. Some are saying it might be a replacement for a stem cell transplant in a certain percentage of cases.

Taking this drug is a bit like playing no-limit Texas Hold 'em. Whether you know the game or not, I'm sure you have at least seen it while flipping through the channels. It is one of those games where you put up or shut up. Well, actually, some of the players never shut up even if they fold.

Anyway, as I was saying, you put up a huge amount of money just to see the cards. You are holding suited connectors so chances are good you will maybe flop a straight or flush draw which carries odds of about 33% that you will complete the flush or straight by the river. If you don't at least watch Texas Hold 'em on TV, I lost you already.

Suffice it to say, just 'cause you put up a huge wager and you are holding fairly good cards, you still have a better chance of loosing all of it than winning. That's why it takes an optimist to play poker, always looking on the sunny side, even if he just took a bad beat, he gets over it in a hurry to play another hand which might be even more promising than the last.

So, that is the way we are approaching this new hand we have been dealt which carries about a 33% chance of success. We are hopeful the drug will do some major damage to as many bad old cancer cells as possible, delivering them a bad beat and allowing us to come out a winner in the long, long, long run.