Where we're at now....

We started this blog to keep family and friends posted on dad.  His initial diagnosis of pancreatic cancer in early October was pretty scary; they thought the tumor involved major arteries (inoperable) and might have spread to the liver.  We kept digging for the best options for treatment, but were very much impressed with his oncologist right here in Joplin, Dr Anisa Hassan.

The Tumor Board: Dad's oncologist took his case before the local tumor board; they reviewed his case and said his PT scan found no spread, tumor was localized in pancreas only and not involving major arteries - so it could be curable by operation!!!  They referred him to MD Anderson in Houston (and secondarily to Barnes Jewish in St Louis) - that's when we really ran into problems. 

Insurance nightmare: It turns out many of the best clinics and specialty health organizations, including the specific clinics recommended for this pancreatic cancer surgery, do not accept Medicare Advantage plans (the "medicare replacement" plans which many seniors have been buying into, or having their retirement medical converted to). Dad's coverage when he retired was the best you could get, but was converted to a medicare advantage plan about 2 years ago.

Notice to all seniors: DUMP YOUR MEDICARE ADVANTAGE PLAN!  Before you have to use it!  You can call specialty clinics around the country or look online at what insurance they accept - you'll find what I'm saying is true.  I've talked to the state insurance board, state health care assistance folks, social workers, oncologists, and insurance specialists at these clinics.  They all agree, and I quote:  "Medicare advantage plans are great unless you're SICK"!!! Then you're really completely uninsured if you want to go to the doctor with lots of experience in your specific disease, the doctor who's the best, or simply the doctor whose surgery you can actually survive!  Just so you understand the implications, our upfront cost out of pocket at MD Anderson - just for consultation and testing - would be $38,000; chemo is well over $10,000 per month; additional meds for nausea, etc. tend to run over $100 per pill; surgery would be astronomically expensive.  Fortunately, we found other options.

We are very lucky to have been so close to year end and open enrollment; dad is disenrolling in his medicare advantage plan and going with traditional medicare plus a supplemental, which will fully cover him at the specialty clinic of his choice, effective January 1. In the meantime, his oncologist here discussed his case with the surgeon at MD Anderson and began a pre-operative chemo therapy which he will have every two weeks until January. 

Treatment is Gemzar and Cisplatin every two weeks, followed by neulasta injection on day 2. He has bloodwork every week to check blood counts, etc.

Good news: so far, he is not feeling any ill effects except a little tiredness. We are forcing lots of terrible stuff (known as green leafy vegetables, healthy fats, and proteins) into him to keep his red cell count and weight from dropping. He gets a neulasta injection which helps with the white cell count. And I am sure he is sick of being told to drink more water! (Water is supposed to wash through the chemo and greatly reduce symptoms.)

Will keep this blog updated!