Wednesday, June 13, 2012

Jen always said she was different...


Wow. It's 9:30pm and I'm still having trouble believing the events of the day.

Jen and I were at Froedert at 7:00am this morning to have pre-chemo bloodwork done, and get a mediport installed.  After which we met with Dr. Santana around 12:30 to be cleared for chemo.  I was surprised when a large number of people walked into the small exam room.  They were all smiling and upbeat so I figured that they shared a joke just outside the door.  They all introduced themselves and the Dr. said, "They all wanted to be here for the good news".  He then started talking about how, because of the oddity of such a young, non-smoker, getting this cancer, they ordered a whole bank of tests that aren't normally prescribed.  What they found was a rare condition within the tumor sample, called ALK gene rearrangement, which allows us to use a very new and specific treatment plan.  So new, it was approved by the FDA on August 24th last year.  It has a high percentage of shrinking the tumors with this very condition.  So for now, Jen won't be undergoing chemo, and the near term prognosis is better.

I was shocked.  stunned.  dumbfounded.  If I had been standing up, I would have collapsed.  This was incredible news.  it's still sinking in 9 hours later.

Jen was still under the effects of the drugs from putting the medical port in.  She was happy, sure, but she seemed to be tempering her reaction.  So I, as I always do, started auditing...
  • Are we absolutely sure this test and these results are for Jen's tumor?  (I was assured yes... several times, every time I asked)
  • Are we sure we should discontinue the chemo? (yes it may inhibit the uptake of the drug, and the trials around this drug are VERY good for this type of cancer)
  • Is this a cure?  (unfortunately no, the cancer most likely cannot be completely removed)
  • Is this for real? Does this increase her chances of survival? (an emphatic yes... several times)
  • What will happen to the tumor cells that stop growing? ( they'll be eliminated through the body's defenses over time)
  • How are the other three cancer patients with this anomaly at Froedert doing?  (every one of them is recovering)

I can't possibly imagine that beating stage 4 cancer is as easy as taking a pill, but if it works, this seems a hell of a lot better than chemotherapy. This treatment is like using cruise missiles instead of carpet bombing. Could it be possible that Jen returns to a "normal" routine in a couple months?  Is that a possibility?  That's such a contrast to yesterday's thinking it's crazy.  

Bottom line:
Crizontinib shrinks these NSCLC tumors in a significant percentage of cases, and increases life expectancy in the near term.  
However... physically, Jen isn't any better off than she was yesterday.  She's still anemic and still has stage 4 lung cancer.  This isn't a cure. The cancer will, at some point, become resistant to it.  No one knows how it affects the long term.  I have to keep reminding myself that.  

Regardless, I'm so happy right now I'm in tears.  My face hurts from smiling.  Jen's the happiest I've seen in months.

Known Facts:
  • Jen has a particular subtype of non-small-cell lung cancer (NSCLC) that has an identifiable trait called ALK gene rearrangement.  This condition exists in 3% to 5% of NSCLCs.  This "defect" allows for the cancer cell to be chemically "told" to stop dividing.   The crizontinib drug does just that.
  • Chemotherapy will not be administered as a first treatment.  This means that Jen won't have to endure all the side effects of the radiation.  Her immune system won't be compromized.
  • The FDD approved form of the drug is Xalkori and it'll cost $5,500 a month (according to the Dr.)  There's a small chance insurance will not cover it.  We were supposed to know this afternoon, but no word yet.  Doesn't matter to me, don't care what I have to do she's getting it.
If you want to know more google crizontinib  or ALK gene rearrangement.  

4 comments:

Jason said...

Great news

Kim said...

That's great news Chris! We're keeping the prayer chain going!

Unknown said...

That is great news! God is Good and prayer works!! David and I are praying and believing for Jen's complete healing and deliverance in Jesus name! :)
James 5:15-16
III John 2

Chris Roy said...

Chris -
Thank you so much for sharing. There are tears of joy in my eyes as I read this. Both Daphne and I are so hopeful and share in your joy of this news. While not a cure, it certainly seems like a better route than chemo.