Tuesday, February 5, 2008

Starting Over

The last week has literally been an incredible roller coaster of emotions. Karen had a CT scan last Monday (Jan 28th). Dr. Dan was away at the American Society for Clinical Oncology's 2008 Gastrointestinal Cancers Symposium all week so rather than wait for his consultation we decided to get a CD from the scan and look at it at home.

We have some experience looking at these things so this wasn't as crazy as it sounds. Unfortunately we were not prepared for what we saw. Karen's entire right lobe shows up engulfed in tumor. After thinking about it for a while we concluded this must be inflammation from her RFA burn in November.

The radiologist's report came through on Thursday and our nurse Nancy walked us through some of the salient points over the phone. Unfortunately this did not sound good at all. One of her tumors which was 5.6cm is now 10.5cms in diameter. The report made mention of increased growth, progressed disease and so on. So naturally we both lost it and have been struggling pretty much all week. I did not update the blog as I just couldn't bring myself to do it and besides, we didn't truly have things from the horse's mouth.

Today we met with Dr. Dan. He was firm and confident as ever and he walked us through the scan results. We learned a couple of things:
  1. The radiologist's report was given by taking the scan as a point in time and not in the context of Karen's RFA. Hence a lot of what is seen on there IS due to inflammation.
  2. Many of the larger tumors have a "classic" ring of calcification indicating necrotic tissue.
  3. RFA does tend to cause more inflammation and hence increased tumor size than other treatments.
  4. Karen does still have cancer and it's still growing in there so it's time to start chemo again.
He also laid out the new plan; Erbitux and CPT-11. Because she is still healing from the incision, she cannot start back on Avastin but rather than give things a chance to grow, Erbitux will be introduced.

Erbitux is a very new drug [LINK] which works similar to Avastin in that it blocks the tumor from binding to a certain protein it needs. The result is that the tumor shrinks and dies. It's insanely expensive and I need to check with our insurance in case we need pre-approval.

Karen will start chemo (CPT-11) on Thursday (7th). On this plan she'll receive chemo once every 3 weeks and Erbitux (which is technically not a chemo drug) every week. This'll continue for 12 weeks after which she'll have a PET and another CT scan. There are side effects which I'll cover in another post and probably a few other surprises in store but we'll deal.

Net-net we've had some very hard, very dark days this week but we are still kicking and remain confident that Karen is getting the best treatment possible.


Don said...

It sounds like we might have had an eerily similar week. We’re meeting with my surgeon to see if she is willing to re-RFA my known & new liver tumors. My near term goal is to try every menu item at my favorite Thai restaurant before I go back on chemo, most likely Xeloda.

Hold Fast

Don MacLeod

Anonymous said...

Dear Shanahans...
you have been much in my thoughts this past week...
and yeah, we don't look at scans before the doc anymore. Therein lies the road to madness. I don't usually look at home afterwards, either, although this most recent time I did, I needed to understand some things. but ugh. it still sucked.

I have a bt-mom friend who's husband is on Erbitux for PMP, he tolerates it well from what I understand (better than the Avastin).

Praying you extra strength and resolve as you battle on...starting over is so hard, I know it's so hard (ours was different, but 3 times over 2 years we started over, we had to try new chemo mixes)...Karen, you are mighty, you can do it...

I'm praying hard, and I'm so sorry, it rots.

Hang in there,
Kristin, Camiolo mom

Anonymous said...

Fran and Karen,

As always, thinking about you.