Tuesday, January 15, 2013

2nd Germany Trip: Post-Update

Hey all,

This is a re-post of an update I made for the ASPS community to keep them informed of Kevin's situation. I thought I'd cross-post it here, in case anyone's still following Kevin's progress through this blog. If anyone has info on SBRT or claims lawyer, please ping me at cswgriffith@gmail.com. Thanks, everyone!


Just saw our oncologist this past Monday for our first post-Germany follow-up, thought I'd update everyone.

To recap, in July 2012 Prof. Rolle removed 120+ tumors from Kevin's right lung. We flew back home in August, follow CT scans showed sign of met growth in the operated lung, most likely mets that had been missed, though neither Prof. Rolle nor our oncologist ruled out regrowth. Because no regressive effect was seen, in fact the opposite, a marked increase in met growth (both number and size) in Kevin's unoperated left lung, we returned to Germany in Nov 2012 (3 months after we got back from the last trip) to do the other lung. This time 140+ tumors were removed and Prof. Rolle concluded in his post-surgery diagnosis that unfortunately these surgeries were not having a regressive effect like we'd hoped and even suggested we pursue adjuvant chemotherapy as he could only promise to lighten the tumor load, not accomplish full resection of lung mets. Not that we realistically expected that, after seeing how many mets were removed in Kevin's first surgery. Kevin's right lung still hadn't even healed properly when they did the left lung, so Kevin definitely needs to give his body some time to heal and recover, rehabilitate his lungs, etc before we pursue any more surgeries. 

On Monday, our oncologist told us they are definitely seeing regrowth in the right lung. The largest one, as far as they can tell, is roughly 16 mm. Most likely, it's in an area that's difficult for Prof. Rolle to get to and was missed, which is to be expected. Luckily, none of the mets seem to be in dangerous locations, but our oncologist is urging us to seriously consider going on TKIs, either Pazopanib or Sutent. He said there's more data on Sutent, but in terms of effects (and side effects) the two are similar, and Pazopanib is more likely to be covered by insurance as it's been approved for advanced stage soft tissue sarcoma. The idea is to see Kevin's response and tolerance to the drugs and hopefully keep the mets that have regrown or continue to grow under check, and then most likely pursue more surgery. 

As for the current mets, especially the largish 16 mm one, our oncologist has recommended SBRT radiosurgery. He mentioned RFA but he said he's actually more inclined to recommend SBRT as it has a very high success rate in terms of preventing local recurrence. I haven't done the full research on SBRT radiation therapy yet, but I thought I'd throw it out there, see if anyone on these boards has any experience. 

It's a little disheartening to hear from our doctors that the laser-aided thoracotomies have not slowed down the disease, but the way I'm trying to think about it is that Kevin has 260+ less tumors in his lungs. It's just a little scary, because Kevin really can't tolerate more open lung surgeries, at least not for a little while, but this disease just keeps on chugging.

So that's that. Kevin's taking a week to think about the TKIs. We both need to do some massive research on SBRT. In terms of his recovery, it's a bit slower since both lungs are jacked up now, but he's following Ivan's sagely advice and doing stationary bike at the gym, yoga for breathing and stretching. He's gone back to work, still gets pretty tired. Slowly but surely we're going back to our normal routine. 

On another note, has anyone consulted a claims insurance lawyer and can recommend one? We're in California, but we probably don't need a local lawyer to get advice. Cigna rejected our claim for the 1st surgery and we're going to appeal, but I'm wondering if I should talk to a lawyer and suss out the situation. Did I mention how much I loathe and despite Cigna? I seriously don't know how those motherfu**ers sleep at night. They had the nerve to call Kevin an insurance whale. Oh, I'm sorry assholes that Kevin's stage four cancer is putting a crimp in your bottom line. Funny you should mention that, we're finding cancer is murder on our finances too. Imagine that. 

I'm convinced there must be a special level of hell reserved for health insurance claims departments.