Hello to all. Dicky here for both of us. Thanks to Abby and her quick fingers for posting a quick shout-out yesterday as we were leaving M. D. Anderson in the heat of Houston rush-hour traffic. She and her mother worked out the basics on the cell phones and Abby filled in the gaps.
We made it safely back to Ruston in the 9:30 p.m. range and crashed hard.
This blog post contains the promised details from Abby’s overview yesterday. As I peruse the disparate list of those who wish to be reminded of a blog posting, I feel I should issue TWO reports for the two distinct types of folks on the list. After you read the first one and feel no need to read further you’ll know which group you are in. If you read further for more details, then, well, there you have it. We appreciate both types!
REPORT #1--the short version [think Reader’s Digest]:
· We saw Dr. Yao [on Thursday], who affirmed that Kim’s situation is “Stable, zero growth, good to continue in the clinical trial.” [You Report #1 readers will appreciate that he was in the examination room for maybe 4 minutes! He and we both talked very fast.]
· Kim received the first clinical trial injection of either the Lanreotide [the drug they are testing] or a placebo. This came after a 4 hour wait—we were scheduled to get the shot at noon and got it at 3:20 or so. Paperwork snafu.
· We drove back to Ruston.
· Fast.
Thanks for riding along with us!
……………….……………….……………….……………….……………….……………….
REPORT #2--for you detail lovers [think War & Peace]:
· We got into an examination room to meet with Dr. Yao in world record time: we were in the room by 10:10 for a 10:00 a.m. appointment. Neither our girls nor we could believe it. I was texting them along the way.
· We met there with Michiko Iwasaki, Dr. Yao’s research assistant, for almost an hour. In that hour we covered more of the details of the clinical trial, as Michiko explained the reporting method that Kim is to use for all that goes on with her physically from day to day. Kim also filled out a questionnaire from the European Organization for Research and Treatment of Cancer [EORTC], who evidently originated and/or oversees this trial. Michiko and Dr. Yao’s Physician’s Assistant did a basic physical exam of Kim as well as the ever-present taking of the vitals.
· Dr. Yao showed at 11:14 for about 4 minutes and answered our rapid-fire questions, assuring us that Kim was “stable, zero growth, and ready to proceed with the trial.” In there somewhere he explained [in answer to one of the questions] that the reason for the Ultrasound this week was to get a baseline mainly for the gall bladder—the drug in the trial has a tendency to increase the risk of gall stones, so they will check Kim regularly.
· At 11:30 we moved downstairs to an Ambulatory Treatment Center [ATC] Bed Unit for Kim to get her first clinical trial shot. It is the place the out-patient chemo patients come for their treatments. We waited a cool 2 hours and 40 minutes there because of flawed paperwork—no Yao signature, then a truncated date that read “09-17-20” instead of “09-17-09”. Don’t you just love computers?
· Along the way the lady arrived to take Kim’s blood, so we moved to a room where that could be done, while still waiting for that much-needed doctor’s signature and the corrected date. Michiko was a tireless worker and continued to help move things along. With no cell coverage in the ATC unit [a rarity for MDA which is WiFi campus-wide] we had to step out and find a signal to call Michiko, as well as to update the girls. Frustration did have a tendency to set in [he said in a very vague passively-worded sentence].
· We finally got in the day-clinic room at 2:20 to await the shot. As I was drifting off to sleep in the recliner there, a fellow showed up from the “Place of Wellness” in the MDA complex—a massage therapist on staff—who was circulating through the rooms of chemo patients and offering free foot massages [thus Abby’s reference yesterday to the foot-massage]. He worked on Kim’s feet while I drifted off to some soap opera on the TV.
· The injection arrived at 3:30 and because of the nature of the trial [and I guess the Europeans who started it] the nurse’s protocol seemed like she was establishing the correct codes for a nuclear launch. The shot came gently and without incident and we were dismissed. We flew out the door, back to our car, and waded through Houston traffic back to Ruston.
There you have the Tolstoy version. Thank you, you detail peeps, for caring about the small stuff. Your care for us is NOT small stuff to us.
Friday, September 18, 2009
Thursday, September 17, 2009
Post-Clinic Report
Hi All,
Abby blogging, once again, from Boston--about as far from the action as I can get, but just a quick phone call away.
Mom and dad have asked me to throw a few sentences up on the blog just to give all the worriers/pray-ers/interested parties a quick update. They plan to post their FAR more detailed account of the last 24 hours sometime tomorrow, so check back.
They want to say sorry for the delay in communication, but they got stuck waiting around MDA all day because of some paperwork snafus (a missing signature, an incorrect date...). They met with Yao briefly this morning and, according to my text message from dad at 10:18, Yao said, "zero growth ... stable. We are ready to go." With this green light, mom got prepped to start receiving The Shot.
And by "got prepped" I mean "waited a few hours to give blood and then get the shot." There was a foot massage involved, but you can ask her about that later.
She wanted me to say she had a prizewinning shot-giver with whom she felt very comfortable and she's "already feeling the shot go to work." Now they know the drill they will be reenacting every 28 days or so for the next 2 years. Mom has just had, as she put it, the first course of a 24-course meal. Mmmm.
So all that to say, welcome (all of us) to the clinical trial. More from K&D tomorrow.
Abby
Wednesday, September 16, 2009
09-16-09—LET THE “TRIAL” BEGIN
WE ARE IN HOUSTON again for that time we’ve been waiting to kick off…
WE ARE FIRING UP THE BLOG for a couple of days at the request of our daughters, family and friends. Dicky is doing the typing with editorial oversight from Kim. It still seems a good way to get the most information to the most people in the shortest amount of time. It also allows us the opportunity to give the info to a typing daughter who can post when we can’t get to the keys.
THAT ALL SAID, we are not expecting anything out of the ordinary on this trip to M. D. Anderson, but since there are more tests and there is a meeting with Dr. Yao, we figured there would be more to tell. Thanks in advance for your prayers and your desire to keep up with this with us.
THIS TRIP is a combination of: [a] the last few tests prior to the starting of the clinical trial described thoroughly in earlier blog posts, [b] a meeting with Dr. Yao to get the results of the CT scan and Octreotide Scan from the August trip, and hopefully, [c] the first of the 24 Lanreotide shots for the clinical trial.
THE MDA SCHEDULE this week is as follows:
> Wednesday, September 16, 2009
· Ultrasound at 7:30 a.m. [NPO 8 hours prior to that—the reason for our arrival Tuesday night.]
· Resting EKG about an hour after that.
· “Fluid” collection is a 24-hour thing that started this morning at 7:00 a.m.
> Thursday, September 17, 2009
· Dr. Yao appointment at 10:00 a.m. , which normally is a 1- to 2-hour waiting thing.
· Lantreotide/Placebo shot at 12:00 noon. Remember we have a 50/50 chance that the shot Kim is getting is not the actual drug for the clinical trial.
We plan on returning to Ruston after the shot Thursday. This post is coming right after the Wednesday events were completed. All but the ongoing “collection process” is done for the day. Kim will be able to eat normally today, uh, except for the things off of the list for eating today—like tomatoes, avocado [goodbye Mexican food!], eggplant, plums, bananas, walnuts, pineapple and CHOCOLATE.
Thanks for your interest and your prayers. As always feel free to pass the blogspot on to anyone who might be interested, and feel free to post your thoughts here or to heaven or shoot an email to jrlove@gmail.com or kimclove@gmail.com. We are checking in at all those places!
We'll post something after our meetings tomorrow.
Thursday, June 11, 2009
Clinical Trial R Us
We thought we’d give you an update on the latest developments on the next treatment protocol for Kim. In our last post we had mentioned the possibility [and likelihood] of entering a clinical trial through M. D. Anderson.
Things have progressed more quickly than we thought they would. Kim called the Research Assistant [Michiko is her name] and left voicemail over this past weekend. Michiko called her back Monday and, before we knew it, we had appointments with her and Dr. Yao ON TUESDAY JUNE 9, as in the day before yesterday!
So we hit the road to Houston again this week and had a couple of hours with her and then a lengthy visit with Dr. Yao about the plusses and minuses of the trial and exactly what the parameters were for getting in and getting out of it. Getting in was not a problem because of Kim's qualification for it, as I described in the last post. Getting out is easy too. Dr. Yao will monitor the results of all the scans as he already does. There will be more scans and tests and more eyes will look at it all. Everything, it appears, starting with the blood work, gets sent to Germany for perusal by doctors there, who evidently oversee the research worldwide. If, at any time Dr. Yao thinks there is growth that needs further [or different] treatment, he will pull her from the trial and pursue other treatment.
For you medical types and Wikipedia researchers, the drug being researched is called Lanreotide Autogel, and it has been an effective treatment for a condition known as acromegaly—a disorder of growth hormones resulting from an over-active pituitary gland. TMI? The hope is that this drug will also be effective in retarding the growth endocrine tumors like the carciniods in Kim’s liver. That’s the long and short of it.
We have a tentative M. D. Anderson schedule for the rest of the year. We return on August 24 for multiple scans and then will go pretty-much every 28 days, usually around the middle of the month. Some of those trips are just to get the shot [with a 50/50 chance of it being the drug or a placebo]. Every 90 days there will be CT scans and meetings with Dr. Yao. So there you have it.
We would appreciate your continued thoughts and prayers. I have a good number of you in my “spam” email to tell you there has been a new post. For those of you who want notification, you ARE on the list if you got email notification of this posting. If you got to this blog without an email from me and want one, just send your email address to jrlove@gmail.com and tell me you want on the spam notification of new blog posts. If you got an email about the blog and want off the list, just send me that request as well.
Thanks for coming along with us…
Things have progressed more quickly than we thought they would. Kim called the Research Assistant [Michiko is her name] and left voicemail over this past weekend. Michiko called her back Monday and, before we knew it, we had appointments with her and Dr. Yao ON TUESDAY JUNE 9, as in the day before yesterday!
So we hit the road to Houston again this week and had a couple of hours with her and then a lengthy visit with Dr. Yao about the plusses and minuses of the trial and exactly what the parameters were for getting in and getting out of it. Getting in was not a problem because of Kim's qualification for it, as I described in the last post. Getting out is easy too. Dr. Yao will monitor the results of all the scans as he already does. There will be more scans and tests and more eyes will look at it all. Everything, it appears, starting with the blood work, gets sent to Germany for perusal by doctors there, who evidently oversee the research worldwide. If, at any time Dr. Yao thinks there is growth that needs further [or different] treatment, he will pull her from the trial and pursue other treatment.
For you medical types and Wikipedia researchers, the drug being researched is called Lanreotide Autogel, and it has been an effective treatment for a condition known as acromegaly—a disorder of growth hormones resulting from an over-active pituitary gland. TMI? The hope is that this drug will also be effective in retarding the growth endocrine tumors like the carciniods in Kim’s liver. That’s the long and short of it.
We have a tentative M. D. Anderson schedule for the rest of the year. We return on August 24 for multiple scans and then will go pretty-much every 28 days, usually around the middle of the month. Some of those trips are just to get the shot [with a 50/50 chance of it being the drug or a placebo]. Every 90 days there will be CT scans and meetings with Dr. Yao. So there you have it.
We would appreciate your continued thoughts and prayers. I have a good number of you in my “spam” email to tell you there has been a new post. For those of you who want notification, you ARE on the list if you got email notification of this posting. If you got to this blog without an email from me and want one, just send your email address to jrlove@gmail.com and tell me you want on the spam notification of new blog posts. If you got an email about the blog and want off the list, just send me that request as well.
Thanks for coming along with us…
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]
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]
Thursday, June 4, 2009
June 4 Report
Hey friends,
I'm bummed to report a little bit of growth measured in today's visit with Yao. Three of the carcinoids on mom's liver have been busy; two grew about 4 mm and one grew 5mm. (The other five held steady.) We had just gotten so used to "no significant growth," that we were all a bit stunned and deflated when we got this news.
Reassuringly, Dr. Yao called it "very, very little" growth (that's two 'very's), but he did recommend taking some action instead of just waiting around, which has heretofore been our game plan. He told us about two potential drugs that mom can opt for:
(1) An FDA-approved hormone that is most often prescribed to carcinoid patients when they start to exhibit symptoms from carcinoid syndrome. Thankfully, mom is not yet having any symptoms, which means she doesn't have the syndrome. The idea is that this hormone retards the growth of the tumors, though the nice RN who was doing the explaining (Yao's research assistant) didn't have any hard data on it at the time.
(2) A drug that's in clinical trials. This would be a two-year program for which mom would get the meds -- or potentially a placebo, which is part of how the trial works -- and hopefully retard the growth of her tumors. The same nice nurse, Michi, said the drug has had success in doing just that. Mom would have a shot once a month, be closely monitored, and Yao could pull her out at any time if he wanted to go a different direction with her treatment.
Either way, Kimmie's back on a three-month schedule of visits to MDA because of today's measurements. To be very honest, we are a little sad, a little scared, and in need of wisdom on how/what/when to pursue treatment. Mom said to be sure to say we are "disappointed but regrouping" and "not despairing." She says she is looking at this as us (ok, her) finally getting a chance to do something about fighting this cancer, instead of just waiting for it to grow. "Getting out in front of it" was her exact phrase.
So now I guess we're entering a new phase of this whole cancer thing. I have to say, I'm not really jazzed up for it. Actually, now that I think about it, maybe they should have had Tigger (that would be Carrie) do this post instead of Eyeore (that would be me)...
At any rate, we covet your prayers/well-wishes/kind words, those we've already gotten and those sure to come. Mom also says thanks for the shower of love and support she feels from all of you.
I think I changed the settings on "Comments", so maybe those of you who have had trouble leaving notes (which are much, much appreciated) in the past, may be able to do so now? But dad says if anyone's having trouble/intimidated by the blog, you can email him or mom: jrlove@gmail.com and kimclove@gmail.com.
Thank you again to everyone for being friends to us and especially to mom,
Abby
Tuesday, June 2, 2009
How Kimbo spent her summer vacation...
Hey all!
Abby here. Sorry it's been so long since my last blog post -- eh, wait, no I'm not! It's been six glorious months since our last trip to M.D. Anderson, but here we find ourselves again for mom's latest check up. I will be reporting on all the exciting events because I am here, in sunny Houston, where the weather is hot, the oil derricks are flowin', and the world's largest Chinese man plays basketball.
Ok, actually, only most of that last sentence is true. I will be reporting, but from approximately 1,846 miles away -- where the weather is mild, the molasses is flowin' (how do you think we make the beans?), and the world's GREATEST baseball team is busy being great. Apparently all the other members of my family are lazy and blog-shy, so believe it or not I have been enlisted FROM BOSTON to keep you -- you who are probably closer to Houston than I am -- informed of the proceedings.
So far: Kim and Dicky left Ruston early this morning, swung through Bush airport and picked up Carrie, then slid into MDA in time for Kimbo's blood tests around 1:30. Kim fearlessly (ok, there was a little fear) sucked down her banana-flavored chemistry shake and underwent the big scan. She says there was actually less to drink this time around, for whatever reason. We don't ask questions; we're just grateful. She is now relieved because the hardest (physical) part is over. Now she gets to exercise her most fine-tuned and favorite virtue, the one she so graciously passed on to her two daughters...patience.
And now it's off to real food for the first time since about 10:30 this morning. For the people in Houston anyway. I just get a call as they're squealing into the restaurant: "Do the blog, would you? We've got to go order."
As always, thanks for your prayers, thoughts, kind words, and well wishes. Keep 'em coming.
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