Oncologist visit

Once again the Dr. was pleased with my "progress" today. He did say the disease showed a very small amt. of growth, which led him to wonder about a thresh hold for the Interferon's continued success.
He also brought up my Hydrocephalus. The ventricles in my brain are larger than normal, and the exit for spinal fluid from my brain is smaller than normal. He is concerned about the possible long term affects of this, pressure from inside the ventricles pushing out. So, he is referring me to another neurosurgeon to discuss a shunt. Inside I sighed heavily, wondering if I hadn't been through enough already. Ah! God's gotten me through this adventure so far. Who am I to doubt that He can carry me to the finish? :-)
I asked him about Pegasys, a time released form of Interferon. He said, unless they found some remarkable progress through further studies, he didn't recommend a change at this stage of the game. Makes sense.
I am scheduled for another MRI & abdominal CT scan in mid October. The drama continues........

Gettin' it done!

With my wife's family coming for a visit to celebrate her nephew's leaving to begin classes at Tennessee, I've been busy working on the house and yard. I do it a little at a time. But, I've been pleased with the amount of work I've been getting done. Finished the grass, planted a hosta, pruned a couple of trees and black berry bushes, then come the dishes and laundry. I sleep well!!

Pulled in two directions!

I'm really torn about meds. The 3 mil. units of Interferon have been working well. But, it tends to mess up my days with my wife due to fatigue and light headedness. These other drugs, ie Pegasys, Interferon b-2, are tempting because of the potentially lesser side effects. However, if I switch meds at this point in the game, I may risk the growth restarting. I know! I do plan to talk to my Dr.. It's just that my appt. with him is 2 wks away.

More News

Talked with my Oncologist's assistant today. He, the Oncologist, does not recommend lowering the dosage of my Interferon. I've been thinking about it and agree. If this level is working, why screw around with it? Also learned that I will likely be on Interferon for the rest of my life, which I plan on bein' a long time . I'm healthy and happy. So, I don't mind so much. My life is what it is for a reason. I don't argue with
The Big Guy. The way I look at it, He can make lemonade from rotten fish. I think I'll do my best to follow where He leads ;-).

Telecon & Endocrinologist

The teleconference went very well. Dr. Kurzrock agrees with us that the most important thing is educating the public on these diseases, especially ECD. People go undiagnosed because, at times, doctors don't know what they're looking for and have never heard of the disease.
Turns out that, now that I've been on Interferon a while, I may be able to reduce the dosage to 1 mil. units 3 times a week. That would mean a huge savings. My last four syringes came in one shipment totalling $1008. It will still cost the same. But, I can stretch out the time between shipments. There are other drugs that may be effective, such as Pegasus. Interferon 2A and 2B are both useful in fighting the disease. So, if one is less costly, I may be able to switch and take us up one level in the poor house.
My Endocrinologist tested my hormone levels, and my testosterone is back up to normal. Funny. I felt that happen. One day it was just like someone flipped a switch on inside me, and I felt much better.

Bad Info

The Tel Conference on the 16th actually has only 10 slots. So, I will report back with what I learn. :-)

Chat/Conference Call

Dr. Razelle Kurzrock of MD Anderson in Houston will be giving her time for a Q & A in our chat room: http://www.chatzy.com/427437211406, on the 16th. She is THE Dr. as far as Erdheim-Chester is concerned and is one of two Dr.'s that discovered Interferon as useful in battling the disease. This is a great honor, and we are, needless to say, very pleased that she would take time out of her schedule for us.

Wednesday, 7/16 at 11:15 am to noon (Eastern Time)
E-Mail questions to garyecd@aol.com.

MRI Results

Well, Doc says my MRI results from Tues., July 8, show "no appreciable growth in the orbits or nasal area compared to previous studies". I'm guessing, in doc language, that's good news. His assistant was extremely pleased. Actually, I'm sure it is good news. I just love the way they phrase things so that it sounds like a good report, but you're not quite sure . Seeing as how once people had about two years to live when diagnosed with this stuff, and I've KNOWN about something, in my head at least, for eight years, I'm doin' pretty darn good . We did discuss another full body bone scan. But, we shall see what ol' doc Friedman says.

The Fourth

I've been feeling so much better. Interferon still leaves me a little groggy. But, otherwise I feel good.
My wife and I celebrated The Fourth together before she went to work (Double time pay!!). I grilled Italian, turkey sausage, baked a couple of taters, made some mixed veggies and had Ben & Jerry's Cherry Garcia ice cream. Too bad I can't have a beer! Oh, well. For me to have done all this a few months would've been quite an undertaking. It was great today, though.