Saturday, June 6, 2009

POST-MDA POST

We thought we’d make one more post before letting the blog go idle until next time, whenever that is. Thank you all for your sweet words and prayers in our behalf.

The “boat” [would that be the Love boat?] has stopped rocking as wildly as it was when we threw out the last blog [over the phone with Abby] in a rush to: [1] get Carrie to the airport in Houston, [2] get us back home to Ruston, and [3] get word to our watching and waiting friends and family. Thanks to Abby for typing through her self-proclaimed Eeyore fingers and getting the word out. Thanks to Carrie for taking three precious-few vacation days and coming to join the waiting at MDA. The presence of both girls through the Houston ordeal has been a great blessing.

In these last 48 hours or so back home we have had time to gather our wits and a bit more information in order to make a more informed decision about which way to head. We have heard [via voicemail] from Dr. Yao’s research assistant that Kim is “qualified” to be in the clinical trial that Abby mentioned in the previous post. The qualifications appear to be the combination of “where” her tumors are located and the fact that they are slow-growing and that she is not experiencing any of the carcinoid syndrome symptoms. It is a drug that has been used in other treatments, but never studied as an option for retarding growth of endocrine tumors. Since there is a limit of 200 participants worldwide, and no more than 20 from M. D. Anderson, we consider it a rare privilege to get to participate.

Kim is leaning strongly in that direction and probably will give Yao’s office the nod early next week. It will mean a trip to Houston every 28 days for a shot that may or may not be the drug—only 50% of the participants get the real thing. There will be several trips early on to get baseline tests, including another CT scan, an Octreoscan [full body radioactive scan] and lots of blood work. The clinical trial will last for 2 years and will include not only the monthly shots, but CT scans every 12 weeks. Dr. Yao said that if at any time there was any unexpected growth, he would pull her out of the trial and “un-blind” the process for Kim, in order to do whatever treatment he deemed necessary.

We have read the 20-page consent form and it is full of all the scary things that consent forms warn you of….things like HIGH blood pressure or LOW blood pressure, or all sorts of options in the lower intestine region that I won’t gag you with in this blog.

All in all, Kim is agreeing to be a lab rat, and she has a 50/50 chance of getting a drug that has shown some promise in retarding the growth of endocrine tumors. Either way it will help speed this drug to the market, if it proves to be effective. Kim wants all of you to keep praying and join her now in praying for success in this new treatment option for her and other “carriers” of this rare form of cancer. This will be our last post until MDA looms again.

We will notify you by email when more is posted, so you don’t have to keep checking. Let me [Dicky] know if you want to be on that email list [jrlove@gmail.com]

4 comments:

Peat said...

Y'all were,are,and will continue to be on my heart and in my prayers!
I want to stay on " the list" you referred to...
All my love,
Peat :)

Lora said...

I think Kim is right on to follow what her heart tells her is right. We all know who is whispering to our hearts! I have you on my blog-friend list, so when you update-I automatically know. If you plan to notify us in any other manner, please email me. conville@suddenlink.net
Love to All The Loves!

Brent Bernard said...

Hey Kim and Dicky,

Missed you at supper Thurs night.
B/C it was Jackie, Amy and I we wound up talking business and actually Jackie brought spreadsheets. I'm not sure but I believe that we were the only ones in the restaurant with spreadsheets on the table.
I hate to hear that you got a "bad" report. We will continue to pray for you.
Love you guys.

Brent

David McGehee said...

Kim, Dicky, and girls,

Sorry to be late getting the news but am glad to hear of the possible treatment options. I trust by now you have talked with Dr. Yao and will be enrolled in the study. Yes, we continue to pray here. Thanks for letting us in.