Friday, March 28, 2014

How Many Oncologists Does it Take to...

Seriously! How many oncologists does it take to figure out a course of treatment? As soon as you go beyond 1, the question becomes impossible to answer because there's no way any 2 oncologists can come to a consensus on how to treat cancer that doesn't follow "the script." The sad fact is that despite billions of dollars spent on "research", when you don't react as expected/hoped to the standard treatment protocol, they just don't know.  There is no right option so I'm left with a handful of different opinions on how to proceed. Every time discuss treatment with one doctor, they take the suggestions of the others to task: "While I respect Dr So-and-so, that just doesn't make any sense" or "Dr So-and-so is an idiot. Why would you do that?"  So helpful.  So I just have to pick one and hope I choose wisely?  Wow

We had it narrowed down to a clinical trial at Columbia combining a newer drug (Brentuximab) with more chemo or Proton Beam Therapy (focused radiation) at Penn. We eventually decided on radiation because that offered the only chance (outside of another transplant) to possibly cure this permanently. Not much of a chance (10%) but still better then the other options which would just put it into remission for n months and then we'd have to do more treatment when it inevitably comes back. The only issue with the proton radiation is that it has not been widely used for Hodgkins and insurance companies don't like to cover it...naturally.

While waiting for a determination from the insurance company on what treatment they will cover for me at this point, I'm just sitting around growing out my cancer...doesn't it look pretty? Maybe it's for the best, we're just making sure it will be in full blossom when we finally do get around to treatment so we'll have big targets to aim at. I swear we'll be back in AK by June 1. That's when the trails will be ready to ride, right?

This week, all doctors seem to have stopped communicating with me so I have no idea where I stand. At least I'm getting a lot of work done or something.

...and so it goes.

Friday, March 7, 2014

What Does Remission Mean to You?

What does the word remission mean to you? I'll tell you what it means to me: jackshit.  Remission is a fucking lie.  Nothing but a big fat lie. LIE LIE LIE LIE BIG FUCKING LIE. Sorry, I've made it point not to curse on this blog because I know family members and such read it, but at times it is appropriate and now is absolutely one of those times.

Remission is just a word the medical community uses when they can no longer see the cancer in the PET scan images. The problem with that is the fact that there is LOT those scans cannot detect. 1 billion cells (1,000,000,000) is the smallest tumor that is detectable by feel. 100 million cells (100,000,000) is the smallest tumor that is detectable in the PET scans. Below that number, they have no freaking clue what goes on, totally blind. You could have 99 million cancer cells and it wouldn't show in the scan and they'd call that complete remission, treatment stopped.  Remission is a lie.

By now, I'm sure you can tell where this is going. Transplant didn't work, some cancer lived through it, I have another sizable tumor in my chest...yadda yadda yadda. We were so close to going back to Alaska. One last scan and then we're outta....whoops. Slow down their cowboy, you're not going anywhere. Not unless you want to take your little friend(s) there with you. Still Hodgkins, still Stage I or II (of 4) so I'm not in imminent danger of dying (yay) but it does not want to be killed and it does come back FAST. Not a great combo.

What comes next: We don't know yet. We're still trying to get back to Alaska but the treatment we select will drive that. Lots of choices, pretty much none of them guaranteed to cure it. Looks like I'll be "managing" this for some time until they do come up with something. The main thing is I'm trying to avoid another transplant, this time with a donor. That's the only full cure available but I think the success rate is too low to justify the risks/awesome side effects at this point. Plus the first one worked so well!!!

So that's my story, have a great weekend! Clinical trials, here we come!

...and please, easy with the questions. Like I said, at this point we don't have the answer and every doctor we talk to has a different answer.