Penny & Irv - June 2010

Dear All;

Irv saw the specialist yesterday, a gastroenterologist, to see if he has autoimmune pancreatisis. From what Dr. Koteen said, and from what we read about it on the internet, Irv surely has an almost "classic" case. It has only been a diagnosable autoimmune process since the mid-90's. It is a very rare diagnosis, and as with Irv, it is not thought of until all other testing and procedures rule out cancer! (Irv did need the bile duct stents placed during the ERCP no matter what.) If the gallon of blood work drawn today proves it, Irv will be treated with steroids. The process responds extremely well to corticosteroids taken over a 4-6 week period. Some patients require an additional series of steroids later, but most do really well after only one. Very rarely a patient will need to be on long-term steroid therapy.

Time will tell what is going to happen to Irv. The doctors are STILL not ruling out pancreatic cancer.

Today I saw my surgeon and really wanted the last drainage tube and bulb to be removed, but I'm still having too much fluid produced so I have to wait another week. RATS! A big adhesion is forming under my armpit, but until I have reconstructive surgery it isn't considered a big problem. One 2-3" area of the incision isn't healing very quickly, but that is probably due to the radiation damage. Just not enough good blood circulation to the skin. RATS again. So, on it goes.

The Oncotype DX people called today for my okay to proceed with the testing to determine if chemo is necessary. They needed permission since I might have to pay about $900 myself. I okayed the test, then the lady asked if I might be eligible for a co-pay stipend from a patient advocacy group. Did we make less than $72,000/year? YES! She is sending the paperwork to verify our poverty status and then I won't have to pay the $900! Yahoo! I wish more of the medical profession helped out people who don't have a lot of income. I think they get penalized the most, and helped the least! Only our oncologist's office called to see if they could help. At first I thought we wouldn't qualify, but now I'm not so sure, so I'm going to ask next week for anything we may be able to get. (I was basing my assumptions on the federal guidelines for food stamps, etc. and we do not qualify for those. Medical income levels must be much higher.)

Anyway, we probably won't have much more to say for a couple of weeks. Again we wait, but at least the waiting isn't for doomsday, but just further treatment options. If our rotten weather would only improve both Irv and I would feel better mentally.

Thanks again for all the support, calls and cards. It means a lot!

Penny