Treatment 5 - A Long Post

Hi all, this is going to be a long one, so grab a coffee and a comfy chair. I want to go over some things that happened today at the Cancer Center, as well as give everyone a quick tour of the treatment and my bald head (for everyone who hasn't seen me since we started).

For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:

OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.

So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:

1. Your "ideal" body weight: The "ideal" weight based upon height. This would (for me, being big) result in the lowest amount of chemo drugs - By a long shot.
2. Your real weight, to a maximum of 2.0 mass to body surface area (I think). This is a more complicated formula that takes your weight into account, but has a ceiling.
3. Your real weight. This results in the maximum dosing (for someone big like me).

Dr. Szarka has me on #3, and given my ideal weight is below 190, that means there is a HUGE difference in the amount of drug I get now vs. the #1 method. Based on this and my numbers (which are also dropping), she made reductions of about 10% in the Bleomicin and the Vincristine. The reductions still have me above 1 and 2, but in her mind it will allow me to continue using the drugs - Something she is afraid she'd have to pull if she continued at the higher dosing. Everyone involved in the medical field has told me before its not a problem, and logically I know it. Heck, even my Mom told me I was an idiot if I went against the doctor we trust. Yeah, funny how that kicks you into gear too.

We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.

On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.

We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.

While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.

OK, on to the tour of the Paoli Cancer Center treatment process!

First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.

Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13 days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.

Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.

They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.

We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact, Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.

Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.