Clinical Trial Information-The study drug

I was able to obtain some more information today--I spoke to Bobby's doctor at NIH and also in North Carolina. The doctors have been very helpful and very willing to answer all of our questions. There isn't much information on the clinical trial but what I could find is HERE. It doesn't go into much detail (not that we'd know much more if it did). I found a few links that might be helpful...

Clinical Trial Information
Ipilimumab Information

Please send any questions our way and if we don't know, we'll ask the doctors. We can figure it out together!

Part 2 from Thursday's Visit

OK, so the majority of information is in the post below this. I didn't have time to post everything else after we got home...so here it is.

The doctor was pleased that the tumors in Bobby's lungs haven't shown much progression. He said that (not so) "unfortunately" the tumors are SO SMALL that they can not do a biopsy to get a piece of them. They need to have a piece of those tumors to be able to build the correct receptors and grow them in the lab. I think that if we can set our goal to keep those tumors SO SMALL that they can never get to them--we're set!

The place with the best clinical trial is probably in Charlotte, NC. We have a call in to the doctor there. The same trial is in NYC but we think NC would be easier. NIH is not doing this type of work right now. We're not sure if the trial is open for patients yet...so I don't have much information on it. NIH said to try this other clinical trial which is much safer than wiping out his immune system. We agree.

So, that is all we know until we get Cl. Trial information. Bobby & I are happy...even since last night, I can tell that he is realizing slowly what we learned yesterday. He was so worried about the scans showing something new. The doctor really made him feel better about the chances of that happening...and a plan if it does. So, Bobby is making plans to go back to work which will do him good. I hope to hear from NC today..I'll call again now and leave ANOTHER message!

OK...we know everyone is waiting!

Well, today's visit was very good. I have facts-which are good and I have a little information on what the plan is. I'll have more information on future treatment when we find out more. Apparently we each heard the doctor say different things. I'll just post what I thought the doctor said. Then, if HE is right--I'll bow out gracefully!

The results of the testing from last week were great. It showed that there was nothing new and only a tiny amount of growth of the lung tumors. All of this is great news. This is what we've been praying for.

The only thing we don't have answers to is WHAT'S NEXT. NIH is not feeling that they are the best place for him right now. They are suggesting we contact doctors in North Carolina where there is a clinical trial that might be best. I don't have all of the information on this so I'll post that when I get it.

Bobby plans to return to work and is still absorbing the good news. I have to post this and will fill in more later (after we play parent taxi)...but this should make everyone feel better.

No Bad News is good! Its complicated (the plan) but his scans were good (only minimal growth in lungs). NOTHING NEW! I'll put more on when we get

Today is the day we've been waiting for-and not looking forward to. We are getting ready to leave to go to NCI. We are both nervous. They will give us results of the MRI, CT, & blood work he had done last week. It has been a long week. We're praying for good-no, GREAT news today. And, thanks because we know you are too.

Reading Material...Information from NCI (NIH)

Perhaps the most extreme form of experimental immunotherapy is adoptive cell transfer therapy. This treatment strategy, devised by Dr. Rosenberg and his colleagues at the NCI, involves removing the natural tumor-fighting T cells from the patient’s bloodstream, expanding their numbers in culture dishes, and then re-infusing them into the patient. The cells can also be engineered to become better tumor killers while outside the body.

For the re-infused cells to take hold, however, the patient’s own immune system is first wiped out using radiation, which may leave the patient temporarily vulnerable to infection. Dr. Rosenberg is hopeful about the benefits of his protocol. “Half the patients with metastatic melanoma will experience cancer regression with this therapy,” he says.

Appointments...

We called NIH yesterday and will go down on Thursday for a day of testing. This will include blood work, CAT scan, and an MRI. Then, a week later, we will go back down for Bobby's visit with the doctors. They will give us the information about what's next at that 2nd visit. We won't know until then when the next step will begin. We'll pass on what we know, when we know it.

P.S. Does the misery of raising teens mysteriously disappear when they turn 20? Maybe we go back to the "Terrible Twos"--2, 20?
Or, perhaps the Terrible Twos is a 20 year long period from 2 to 22!

oops...Sorry!

YES, THEY ARE HOME! We've been very busy. Bobby and the kids got home around 5 on Thursday. We were busy unloading & unpacking on Thursday, Donna worked on Friday--and today is Saturday. We've been spending alot of time together & forgot to let everyone on the blog know that they made it home safely. The trip started on June 11th (Lindsey's birthday) and ended on July 9th. Other than the many attacks from hailstorms and a blown tire on the camper, everything went smoothly and we were blessed with a terrific trip. The kids were (mostly) very well behaved...not that they ever aren't. We would have stayed out there longer if we had unlimited time (and $$) to spend. The mattress in the camper was starting to get a little uncomfortable and the kids were tired of sleeping in their sleeping bags/bunks. Other than getting home to the kitties, having your own bed, shower, & toilet can't be described. We aren't complaining though because it was great having the camper and not having to stay in hotels & use public restrooms! Taking the camper along was a great benefit. We planned on "roughing it" a bit more than we did, but for 5 people to stick together like we did was enough to expect. Bobby had said that we were fortunate to be able to stay in all of the neat places we stayed. Although the campground wasn't great, it was nice to be able to stay right in the park at Yellowstone-if you don't mind bears.

Maybe I'll try to post more pictures tonight while they are all at the tractor pull. Bobby said that there weren't many pictures taken after I left...and I haven't looked to see what they brought back. Stay tuned ...

P.S. Bobby is feeling good. (Which is really all you wanted to know about anyway!) He is anxious to see what NIH/NCI has in store for him--and not really looking forward to it. He was glad to get the camper back & unhooked. It must have been a load off his back--which was starting to cause him pain. Changing the blown tire caused misery for his back. Other than that, he is doing great. We'll call NIH on Monday to set up an appointment and see what to expect next.

Almost home!

This is a map of the places where Bobby's cell phone has been located. Last night was the final night of the journey. They will all sleep well tonight! There is a spot on the map at our house...and then the trail heads NW into Pennsylvania...Ohio...and west. The second map is all of the locations where we've been. Each spot is where we were when the phone was located by GPS.
Today, as they head north from Virginia, they will complete the loop. EVERYONE will be glad to get home. I haven't posted much since I got home because I don't have the pictures that they are taking. I will have tons of pictures to sort through (at least that is what I'm hoping) when they get home. Pictures, laundry, food, souvenirs, and rocks. All of that STUFF in the camper will have to find a home inside the house. UGH!!! I think I would be happy moving OUT of the house...and just live IN the camper. It is so easy. Bobby is tired, and anxious to get home...he sounds a little tired and says it seems like it is taking forever to get home. Tennessee was long and Virginia is always a drag. We have always called it "Dan's Favorite State." When he was younger and we drove to Florida, he started the trip by asking "Are we there yet?" Our answer for hours was, "No, Dan, we are still in Virginia!" I know it seemed like days. They will be anxious to get home today and Virginia will seem like it never ends.

Video of our 2nd dose of HAIL

Hail at Hart City Ranch, Rapid City, SD

View of Kennecott Copper Mine from the top of Butterfield Canyon Road

OK-this is the video that I was talking about. I will try to straighten things out on the blog--with which video goes with which title. There is a Hail video and a Copper Mine video. This is the Copper Mine video-from the top of a ridge that we drove for miles to get to the top of. The following day, we visited the mine from the Visitor's Center. It was a little more safe.

Aunt Tracy found him!

Jim & Tracy, Katie, CJ & Robert watched 3 of our cats for us for 3 weeks while we were away from home. They graciously took Ditto, Lexi, & Maybelline into their home. These are the 3 cats that we felt wouldn't do well if left at home. Lexi gets medicine twice a day for seizures. They are all spoiled and needed TLC. We were a bit worried about the mixing of two family's array of pets. Our cats would have to learn to live with the 2 cats & a dog that already live in the J&T Harsh household. Everything seemed to be going well and the B&D Harsh cats were dealing with the change...UNTIL Ditto disappeared! He was gone for almost a week. We got a call from Jim that he was missing and they were in the process of looking for The Ditto. They looked and looked and looked-NO Ditto.

Donna came home from Colorado on June 30th, leaving Bobby & the kids with the camper and another week of travel. After arriving home, she went over to pick up Lexi & Maybelline. They were happy and didn't seem to care if they stayed or came home. Still NO Ditto. The J&T Harsh family felt VERY bad that they misplaced Donna's favorite cat. Donna says that he isn't HER favorite cat but Donna is The Ditto's favorite person. The Ditto had even started to bond with Tracy before he vanished.

Donna brought Lexi & Maybelline home and settled them back into their own house. No Ditto. Then, at about 11PM the same night, Jim called to say that Mam & Tracy had found The Ditto. He had been hiding under a dresser behind a spot that kept him out of view. Even looking under the dresser, you couldn't see the fat cat.

Everyone was happy that The Ditto was found. Tracy was most happy--until the dumb cat went to the bathroom (x2) on the bed! DUMB DITTO! The next day, after work, Donna picked up Ditto (after coaxing him out from under the dresser). Ditto is happy to be home.

THANK YOU JIM, TRACY, KATIE, CJ, & ROBERT!

The Ditto