Just a request.

[walter32799]

Got a release form from Heath Shuler's office for info about my situation. I just have to bug my Oncologists office for more info, now. I feel like a pest. But, if this drug has a chance of ridding me of this junk, oh well.

[charlie2]

Hang in there walter. I'm sure it's gonna be ok. You're in my prayers and thoughts

[walter32799]

Got the initial results from my doc on the Cladribine vs Insurance deal. Seems, since it's an experimental drug, CIGNA won't cover it.
Now, that's a politically/ profit motivated move if there ever was one. Think about it. Since this disease was discovered in 1930, less than 350 people have been diagnosed. So, any drug used to treat it is experimental. By their standards, Interferon is experimental where ECD is concerned. That's the drug I've been pumping into my veins three times a week for over three years, now. It's stabilized the growths. But, it's done nothing to reverse the disease or its damage. I am thankful for that drug. However, when another drug has been shown to rid the body of the growths and render a person "In Remission"?!! C'mon!!
I'm looking into assistance. I mean, it's about $15,000 per treatment. The # of treatments varies, but stands at roughly, at least, once a week. Anyway, because the disease is so rare, there's no real schedule for treatment.
I'm planning to call my agent and/or the company. But, all that can be a whole new ball game.
Oh, the fun when one is bull headed and determined not to get screwed over!

[walter32799]

Heading in for an MRI of my brain Wednesday and a CT scan of the upper torso on Thursday. Unfortunately, I missed that I have a physical at 8:30 AM Thursday and the CT scan is set for 9:30. I think On the 'morrow, I'm going to have a physicians ass't a tad sick of me!!
Curious about the CT scan. My problem has been w/ my upper arms. I wonder if they are included in that scan.

[anne]

Walter - keep it up ! You will do great.
Cladribine has been around for a very long time, and may be something that you can get help paying for. They are using it as a study med for my situation as well, and it helped me tremendously. I am sending thoughts and prayers your way.

[walter32799]

Got both scheduled for Friday. Only problem is, the MRI is fasting w/ the ol' flavored barium. I think there's a few cups of water in my future.
Oh! I qualified for assistance w/ Interferon and won't have to dole out those major bucks any more. Yeeha!

[walter32799]

Fun day, Yesterday. Showed up a few minutes early for my 2:30 MRI & CT scan and promptly was summoned to financial. There I learned that our co-pay for the procedures was going to be about $70 more than they had quoted less than 3 hrs earlier. Apparently, they had forgotten about the CT scans.
Then I waited for more than an hour as they battled w/ Medicare about the CT scans. According to the gov't officials, these scans wouldn't help me. Well, no crap!! They're a diagnostic tool, nimrods. They're one of the few tools that can keep an eye on this disease.
About 3:30, they escorted me into the MRI room for a lengthy round of images of my gray matter. That took about 45 minutes to an hour. Then, I needed to drink more barium, since it had been so long.
Next, I trotted off to the CT room, got the dye that burns the ol' lungs and groin and finally reached my truck at 5:30.
After fasting for 18 hrs, I hustled off to Hardee's for those new chicken tenders (I kinda felt like I'd earned 'em). Mayun!!!, those things were good . .

[walter32799]

My images came back showing stability in the growths except for my spine. Doc's office said some "sclerotic" growth is shown there. Only understanding I could find about that is, bone reacts in two ways: 1) It retreats, or dissolves, to protect itself from an aggressive growth, 2) It builds up (hardens) to protect itself from a less aggressive invader. If anyone has a more easily understood explanation of the term, I'm all ears.
Headed into Johnson City, TN yesterday morning, saw a photo of our embryos, had a short consultation and the implantation was performed. We should know something in around 10 days.

[walter32799]

The thought of bein' a daddy at 49 scares the poopy out of me. That means I'll either be departed from the planet or 68 when our kid graduates high school.
Not to mention, I've decided to check into home schooling. Not a fan of todays public education. The teachers can be great. But, their hands are tied by higher ups. Shame, ain't it?

[walter32799]

Read an abstract from an E-conference our chat group had w/ Dr. Rozelle Kurzrock of MD Anderson in Houston. She's dealt w/ a number of ecd cases. In that abstract she states that she has seen improvement in some patients. She does warn that the improvement does not mean an absence of the disease, but somewhat of a retreat in the growths, and the illness has shown an ability to become resistant to interferon after several yrs.
I "install" this because my doc said the CT/MRI showed stability "if not improvement". I'd still like to try Cladribine. How does one argue w/ a drug that has kept me stable for around 3 yrs., though ?