I Wanna New Drug

Scott could be a candidate for a phase III study on a drug called h-CFR. It is used to treat edema in patients that are being treated for brain cancer. It was on T.V the other day with who again Scott's neuro-oncologists - this doctor is up to date on the latest trails and results on everything. I would volunteer Scott to be used as a laboratory rat but this drug seems to have excellent resultsand with Dr. Nick's backing. I e-mailed the doctor doing the trail studies and he is beginning phase III and is interested in meeting with Scott, our appt is on Tuesday. The h-CFR takes the replace of Dexamethasone , when you are on Dexamethsone for so long you begin to have other problems, one is that your body forgets how to make it's own steroids. The h-CFR drug is giving by injection twice a day, Scott won't give him self injections so meet nurse Dalana. The drug reduces the swelling in the brain and also promotes the body to make it's on natural steroids. This is the article I had gotten off the WFTV health website.
BACKGROUND: For thousands of patients with brain tumors, managing the side effects of treatment is half the battle. Many patients must take steroids, like dexamethasone, to reduce the swelling in their brains. Without these potent drugs, the swelling around the tumor can cause neurological problems. Nick Avgeropoulos, M.D., a nuero-oncologist from Florida Hospital Cancer Institute in Orlando, says: "The swelling can sometimes cause a much worse deficit than the tumor does by itself. Steroids work very well at suppressing the swelling, in general, but the problem is, over time, steroids can carry a lot of side effects." Some of those side effects include: » Insomnia » Psychosis » Blood pressure and blood sugar irregularities » Weight gain » Muscle weakness A NEW OPTION: Now, researchers are testing an alternative to steroids to reduce brain swelling. The new agent is called h-CRF, or human corticotrophin releasing factor. It is injected two times a day. The therapy works by helping the body stimulate its own steroids. "For so long, the body has been exposed to steroids in a pill form, and the body, many times, forgets how to make it, so it stimulates it but without all of the adverse events and with a more pure and natural way of using the body's own mechanism to replace and get back to normal," says Dr. Avgeropoulos. THE STUDY: Researchers are currently analyzing the data from Phase II of the study, but they say the results look very encouraging. "We have had pretty much, across the board, very good results with some dramatic results," says Dr. Avgeropoulos. Right now, researchers are testing the drug on the most needy patient population. Researchers are enrolling patients for Phase III of the clinical trial at about 35 centers around the country. For a list of those centers, go to http://www.clinicaltrials.gov/ct/show/NCT00088166?order=3 THE QUALITY OF LIFE FACTOR: Dr. Avgeropoulos says one of the unique and important aspects of this clinical trial is that the new drug is helping patients' quality of life. Many have been able to get off steroids and avoid the harsh side effects the drugs pose. "We know that even if a therapy does not necessarily improve the quantity of life, if that quality of life is 90 percent instead of 10 percent, well we have done something, and we have done something affirmative, positive and good for our patients," says Dr. Avgeropoulos. OTHER APPLICATIONS? Although h-CRF isn't being used to help patients with other disorders right now, Dr. Avgeropoulos says it very well may be studied for rheumatologic conditions like lupus in the future.

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Blue Man Group Rocks

Michelle, Matt, Scott & myself had bought tickets to see the Blue Man Group. .  We left early afternoon to hit Margaritaville for dinner and those famous margarita's. Good thing we didn't have more time than what we had because Michelle and I probably would not have  been able to walk unassisted. I didn't eat much of the day because I knew I was going to drink (dumb idea). We arrived to the show and our seats had plastic bags draped over our seats. Ummmm , we were third row from the stage middle seats not bad. Until Scott has gotten hit with a flying jello blob. It's all fun and games until someone gets hit with a flying jello blob. Good thing you had on your plastic cape
Scotty. Although, Scott said it really hurt. It was nice to actually be out of our usual
environment. Food was good, drinks were better and the company was great. Scott did a lot
of walking but he hung in like a trooper and did great.

Back Home

Scott and I are back home. Scott almost immediately has usage in his left hand but because so much muscle mass has been lost he really has to work hard in physcial therapy. It's good news because we were not sure if the tumor was growing into the motor skills tract or if it was infact swelling. Dr. Nick says it's a good sign and points more towards swelling, and not tumor growth. We are going to take the after noon and rest, we are both exhausted.  Thank you for 
all your prayers.

Please Pray For Scott

We are headed back the hospital this morning. Dr. Nick is admitting him for three days. To administer , Avastin & manitol. In doing this along with his original chemo irinotican we are hoping to reduce swelling in the tumor so Scott will have more useage of his left arm.

Home Sweet Home

Scott had chemo on Friday. He still lags alot on the left side. The lagging seems to be getting worse. It is hard for him to dress himself. He doesn't have the mobility in his left hand to tie his shoes. There is more swelling in the brain so until that is under control then this is suppose to be normal. It's frustrating for him and exhausting for his right side to compensate for his left. He is still in physical therapy and will continue with that. In the mean time Dr. Nick is on vacation and no one seems to have any answers.





Sunday Michelle and I gave my mom a 60th Birthday party. Our theme was "Bringing Back The Oldies"It was great we threw it @ Captain & the Cowboy in Apopka ( my hometown) My mother's sister's one from Texas and one from St. Louis flew in for the big event. I had done a slide show from her as a baby all the way through her children and grandchildren, that was shown through dinner. Michelle and I made centerpieces for the tables and we built a jukebox with working lights to be used for the cards. Captain & the Cowboy said they have never had a party thrown like that there. The head of events tried to buy our props - we told her we had a party business, then she wanted to rent our our things. We also had guests dress the part. Scott dressed the part but, because of his condition couldn't really enjoy the dancing or visiting with the guests.

Monday morning Scott and I flew to St. Louis, rented a car and I drove 2 hours to Ft. Leonard wood for Blake's graduation as a solider. After a short briefing ceremony on Tuesday, on the does and don't s mostly don't s we were able to see and take Blake for the afternoon. The first thing he wanted to do was eat and eat and eat, not even Scott could keep up with him. Wednes
was graduation. Scott and I are very proud of what Blake had
accomplished. The training they put them through was unbelievable. Not everyone that started the basic training finished The ceremony showed how hard they worked and words can't even describe it. After graduation Blake showed the respect that his drill sargents had instilled in him and shook each one hand and thanked each of them. On the way back to the airport we had stop at a resturant to grab a bite to eat. Blake was standing at the salad bar when the chef yelled hey, soilder. Blake walked over to him and he asked Blake if he could cook him a steak. Blake replied with a yes sir, the chef asked Blake how he liked his steaks. The chef personally delivered the steak to Blake and saluted him. When we arrived to the airpot I noticed our tickets and and seats were not together. I went to the ticket counter and asked if they could place us together because we haven't seen him in 9 weeks and he just graduated from basic. She asked if he was in uniform and he was so she bumped us all to first class and told Blake they supported all they do.
Blake can hold his head high because he is an American Soldier.
"Congratulations Blake"