Friday, July 12, 2013

So, How'd That Waiting Thing Work Out?

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

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Kevin's Update

ANOTHER long gap in posting, wow! Well, here's what's happened with the waiting game.

Had the Rituxan Maintenance again, this time end of April. No problems, all fine. Late May, went for a long bike ride, soon noticed these large nodes in my "hip joint" (let's just all be adults and call it the groin, eh?) were sore. Kept on being sore. Had another CT, yup they were bigger since the January scan. So the maintenance regime, at best, was only slowing things down. Definitely not regressing.

Went over to Moffitt and saw Dr. Shah again. He suggested radiation to knock those nodes down. Radiation isn't a cure for MCL, nor often done, actually. Rather common in specific locations for more common lymphoma, though. We discussed what other options I have, and what comes next.

Dealing with these major cancer geek doctors, who truly have a passion to cure this evil, can be fun if you have your own head in the right place. Dr. Shah is as caring and compassionate a healer as you'll find anywhere. But, when you get him talking disease rather than patient, he's a real hoot. "What I like about your MCL," he begins ... Basically it responds to treatment, and my bone marrow must be made of silicon or something because it bounces back like crazy from every odd & strange thing its been subjected to.

So we had a bunch of choices. First, the Ibrutinib magic potion continues to be fast tracked by FDA as a "breakthrough drug," doing wonders for MCL patients Latest Press Release .  Won't be out until September, earliest, though Second, there is an oral drug, PD 0332991, which combined with an old chemo, Velcade, that shows great promise. Clinical Trial.  Moffitt is doing this trial, unfortunately, it means driving over there twice a week. Which I would do if I needed to, of course. Better choice from a personal standpoint is a Revlimid + Rituxan approach. Lenalidomide Study. This is a thalidomide derivative showing good promise, and I could take it at my home site of SCCC. And, it's not a chemo, but some sort of immune system activator.

Last choice was to continue to watch and wait. I was pretty sure I wanted to do the Revlimid approach, since it was "let's try another drug and I know how to do that." Honestly, the whole radiation thing scared me a bit. Can't say why, but it sure did.

Well, last last choice is to go for the allogeneic transplant I've been kicking down the road for 7 years so far. Dr. Shah wasn't really pushing that one as much, and I still don't like the odds. BUT I will reach an age/stage of cancer where I've waited my way out of that option, so I don't dismiss it from consideration lightly.

I really shrank away from the radiation option (future pun impending). Never had it, always scared of it, not sure why. Believe it or not, I find the whole concept kind of icky. Heck, radiation is what CAUSES cancer! (of course, so do toxic chemicals, but the Lizard Brain is not a Logical Brain).

Which is why thinking, talking, and researching and taking a few days to think is a good idea. I thought about all my cancer buddies who'd had it, still vertical and coherent (except maybe that lawyer buddy, and hey, let's leave those jokes for another day.) I also did what I am trained to do, when faced with a complication decision, and only subjective data. Analyze dispassionately.

• Fact: In January I had clear CT and PET scans except for the nodes in my right groin.
• Fact: In May I had a CT, only those nodes were bigger, no cancer anywhere else
• Choice 1: Use the Revlimid/Rituxan treatment to try to shrink the nodes, eliminate the residual cancer, either go back in remission or stall the growth until next attempt. (60-70% chance of success)
• Choice 2: Take the radiation to eliminate the cancer in those nodes, putting me fully in remission (90+% chance of success)
• Analysis: Why was I wanting to do another type of infusion? Well, because it's familiar, and can be done in Titusville. Why not radiation? Because I don't know the risks and procedures.
• Answer: Duh.

If I can increase the odds of a 1-2 year remission, with high odds (70-80%) that a preventative brand new, sexy hot designer drug is coming, why in the heck wouldn't I do that?

So Sandy and I met with the Radiation Oncology Nurse Practioner, who is one of the best "explainers" I've ever met. And the RO Doc, ditto. Lots of technical information, summarized below.

They do another CT of me, locating each specific squishy icky part. Then they use "What you NASA guys love"; a CAD program to design the path each radiation beam will take to avoid all organs except the nodes. Their machine has 8 beams rather than the standard 4. They say, other than major research hospitals and universities, no local Oncology center in the US probably has this level of machine. What matters is "rads on target" (my term not theirs). So if you are getting "X" amount of rads; this machine lets each path deliver 1/8 of it. So soft tissue in the way gets a 1/8 dose rather than 1/4. Only at the intersection (Let's call that The Gang Hideout Where The Evil Lurks) gets the full dose. THEN they figure out what a lethal dose is, there in that little den of hell where my "last" cancer lives, divide it by the number of safe doses for my good tissue, divide that by 8 paths, and voila - 24 treatments to get the proper sized "bucket 'o' rads" to the node. Radiation accumulates over time, so whether you get it all at once or in eyedropper fulls over time, same effect. If you don't need bowels, bladders, bone marrow, and those sensitive gender specific things we aren't allowed to teach about in school because Adam and Eve were naughty. If you every want to pee, poop, make blood cells, walk, and, uh, you know, again, it's better to do it in 24 daily shots rather than 1 dose!

So I decided to press with radiation. Went in, got the simulation. They draw sharpie X's all over your nether regions. Then they fire up the "hologrid" (yes my Rad Onc Nurse Prac is a trekkie I think). A grid of laser lights makes you into graph paper. They X you, shoot the CT, send you home to get sharpie marks all over your clean white sheets for a week unless you wear Ward Cleaver's pajamas.

A few days later they do another run. You get back on the machine, they run their CAD program (no radiation) as a full dress rehearsal. At that point you get tattooed with little classic green ink dots at each "X". Then you can scrub off what sharpie has ruined your PJ's and bedding. (Not that anyone is upset about than, no sir.)

Last Monday was supposed to be my first treatment. Computer broke. (NOT THE MACHINE they were quick to tell me.) Tuesday, computer broke. Wednesday the magic happened. As expected, quite the anticlimax. You lay there, not moving. A big disc moves around you, stops, buzzes, moves. 8 times, 5 seconds each. Done. Thursday, ditto. In and out in 15 minutes. It's almost scary how invisible and undramatic it is. Radiation can't be smelled, seen, heard, or felt. Which is why they have such strong safety procedures. And a lot of people involved.

And, while they do preserve your modesty as much as possible, lets face it.  A washcloth over That Area of a 55 year old cancer guy isn't exactly like Tarzan's little leopard skin! And no big knife or tooth necklace. But between all the young ladies and men being total professionals, and my 8 years of being a Cancer Test Dummy, there's not a lot of "who cares" left in that area.

When we had realized the Rituxan wasn't holding the line on progression, nodes were still growing, We had a month or so to get to Moffitt, make decisions, etc. Well as that went by, appointments were held, processes proceeded, I started to get a swelling in my thighs, basically big soft lumps under my skin, that would come and go. I'd had these last year, and since the timing ALWAYS went with when I'd gotten mosquito bites, I assume some weird allergy/cancer/treatment reaction. FINALLY got an answer this year. Lymphodema, which means, in highly scientific jargon, "lymph nodes clogged up."

As the cancer grows, the passages in the nodes restrict, the fluid backs up, and leaks out just like that A/C drain that flooded our garage on July 4th at 11pm! So Good Doc Levine gave me, oh joy, more steriods to take. These open things up, and also are somewhat specific to lymphoma (The "P" in "CHOP-R".)  So swelling is down, moods are iffy, and sleep is stressful.

And I'm alive, working hard, doing things with the family, writing articles, blogs, going to Orlando City Lions pro soccer games, and being as normal as I ever have. Can't argue that.

Back in 2005/6; I took a large dose daily for 5 days. My family used to cheer when Pill Five went in each three weeks, "because now Daddy can come back." Rugged on your psyche, moods, sleep, and eating.  This time, its only 40% of the dose but still a bit destabilizing. I'm doing well, mostly, but am balancing steroid buzz with sleeping pills to get about 5 broken hours sleep a night. Will need this until radiation kicks in, hopefully in a week or so, then can gradually back off the Performance Dehancing Drugs.

Next post will be a draft article I'm working on to kind of sum up What I've Learned From All This.

Love to God, my family, friends, and interested Readers

Kevin