Medical hell-week

[LexieCat]

The one thing I dislike about clinical trials is all the dang TESTING and other procedures in the run-up to treatment. This week, I had labs drawn, brain MRI, chest Xray, and CT scans, as well as meeting with pulmonologist who will do bronchoscopy next week. After that, I should be good to start treatment on 11/29. I have to give them credit at Penn--once I completed the paperwork, everything has been scheduled FAST.

I liked the pulmonologist a lot. He asked why I was there (he hadn't gotten word of the scheduled biopsy yet, though he found it on his computer while I was there) and, after chatting for a bit, he asked me what I did for a living. He laughed when I told him and he said he would have guessed something in the medical field, since I seemed very knowledgeable and made reference to the abscopal effect. I told him I just hang out with a lot of smart people, lol. I hope he's the one who will do my on-trial biopsy in mid-December--not that I'll have too many dealings with him, but it's nice to feel like you know the doctor who's working on you.

Anyway, will be glad to get this show on the road. Hopefully the side effects won't be too daunting--apparently it has been for quite a few participants. At least I seem to do fine with Keytruda, so hopefully that's a good sign.

[LouT]

Holy mackerel Lexie.  That is one load of tests.  I remember my wife participating in a trial for a new macular degeneration drug and (at the time) I thought that she went through a lot of testing before the trial until I just saw what you listed.  Hang in there, you'll be in trial soon and my hope is great results for you.  Have they discussed the side-effects they's observed to this point?  Hopefully your compatibility with Keytruda will portend low complications with the trial.  You're always on my list.

Lou

[LexieCat]

4 minutes ago, LouT said:

 Have they discussed the side-effects they's observed to this point?  Hopefully your compatibility with Keytruda will portend low complications with the trial.  You're always on my list.

LOL, I'm on a lot of people's "list"--probably not the one you're thinking of! 

I got a list of potential side effects--which generally don't tell you much. The research nurse said I'd probably need to have someone drive me to my appointments on Days 2 and 3 of the first cycle (labs and checkup) because many had experienced severe fatigue, weakness, and high fever. I will have to alternate Tylenol and ibuprofen the first few days. The nurse says I will probably only have those followup visits the first cycle or two. 

Infusion days will be LONG--at least the first couple (hopefully not every time): 30-minute Keytruda infusion, 30 minute wait, 90 minute CDX-1140 infusion, then 4-6  hour observation period. 

 

[LexieCat]

Got a good-news call from Penn Medicine--I can skip this initial bronchoscopy. I may still have to do the on-trial one in mid-December, but I'm super happy not to have to go to the hospital next week. And so will my friend, who was planning to drive me and pick me up.

[Rower Michelle]

Well that’s at least one off the list… here’s the getting the show on the road.  

[Judy M2]

Thank goodness that's behind you now. Hoping for better times. 

[Tom Galli]

Lexi,

Indeed, skipping a bronchoscopy is great news. I always had soreness in my throat and had difficulty talking after bronchoscopies. Unfortunately, I've had too many to recall during my treatment years.

Stay the course.

Tom

[LouT]

Lexie,

Throwing it in there with everyone else.  No bronchoscopy is a good thing.  And YES, you are on a very good list in my case.    

Lou