Friday, December 7, 2007

Trial started, one cycle down

Hi! Today I completed my first cycle of ipilimumab, the antiCTLA-4 clinical trial drug. It really was as easy as promised. I was indeed able to eat during the infusion, we watched part of a movie on our laptop computer, and the only noticeable side effect I've had so far was sudden fatigue right at the end of the infusion. I felt like I could just close my eyes and go to sleep. But I can deal with fatigue. I have three more infusions scheduled once every three weeks: 12/28/07, 1/18/08, and 2/8/08. Those are all Fridays, which means I'll have a full weekend to recover if necessary after each one. After that I get scanned and, if it looks like I've responded to the treatment, I go into the "maintenance" phase of the trial, which means continued infusions but at less frequent intervals.

A couple things made me feel good about my treatment today. One was that the other melanoma patients I saw at the doctor's office all looked better and older than I did (none of them had canes, all had full heads of hair, and they were all a bit overweight). I take it that's a sign that ipilimumab can work. I also was glad to hear the nurse say every patient they've treated on this trial at their office has gone on to the maintenance phase, which means everyone has responded at least in some degree to the drug. Again, I take it that's a sign that ipilimumab can work. I hope I'm not the exception.

Kelly and Finn came with me today. The nurses all loved Finn, of course. I was just an afterthought really! : ) My sister, Mary Margaret, stopped by to say hi while I was there, too. All in all, it was a good experience and I'm already looking forward to the next one.

Thanks to everyone who helped out with the kids today, especially the Due's and the Murphy's (and to Mark for shoveling us out once again!). I don't know what we would do without such wonderful friends to help us!


PS I wonder if anyone can give me an answer to an unrelated question: do you know of a place where a person can buy movies that have been edited for content for presentation on airplanes, cruise ships, or even TV? I ask because Kelly and I were watching "Love Actually" during my treatment today. It's one of my favorite movies. The first time I saw it was on one of my brother's cruises, when it had been edited for content. Then when I saw it on an actual DVD, I was shocked at some of the content and for that reason I always hesitate to recommend the movie to anyone else. I wish I could get a cleaned-up copy of the movie so I could share it with others.


Katie Clancy said...

Hi Jeff, Onward and upward! Good to hear the treatment's side effects are minimal. Definitely encouraging that the other patients you've seen there are doing well too! We thought of you today especially and are glad all went well with Day 1/Cycle 1. Thanks for the update. Talk to you soon Katie and Ed

mka said...

Glad the new treatment went well. Here are a couple companies that sell edited dvd's. scrapintoo is only available until Jan.2008. I don't know what happened, but go into their site and you can read it on your own. Here they are: and Maybe you will find the movie you like from one of these companies. Myrna

Mary Louise said...

Hey, Jeff. 'Love Actually' is listed at (scroll down to 'L Group') Too bad that site has to close down by the end of this month!

I'm delighted to hear how promising the new treatment is! GREAT NEWS!

Melissa Floryance said...

HI Jeff! I used to work with Kelly at Petrie & Stocking. I appreciate the time you take to keep up this blog! My family and I pray for you and your family all the time...thank God that the new treatment is going well.

In regards to the edited movie question...I found a great article for you at...

Hope this helps and MERRY CHRISTMAS!!

Justin Teasley said...


Check out this website for edited movies. It appears to be legit and has the latest up to date movies.

Sounds like great news on the trail front.
Keep fighting!

Patrick and Tracy said...

Jeff, Glad to hear the treatment is going nice and easy. That's got to be a relief. Thanks for keeping us updated on the trial.
We are in Taipei today trying to catch up on some much needed internet time. We found a Starbucks here and are using their wireless. The weather is about 75 and getting warmer everyday. Should be out of the cold for awhile. Beijing and Japan were enough cold for us for awhile.
Glad to know you are doing well Jeff. Hope you are getting our group emails we have been sending. Also, so glad to hear Bo is coming back to Nebraska. Can't wait for the next season to begin. Tell Kelly and the kids hello for us.
Love, Patrick and Tracy

tbokern said...

Hi Jeff,

So glad to hear the trial treatments are going well!

I just ordered a familiy friendly copy of Love Actually and am having it shipped to you. For other edited movies check out The site says they are going out of business but doesn't say when. Your movie should arrive in 3-4 weeks - sooner I hope!

Merry Christmas!

Tammy Bokern