Removed from Anti-LAG-3 Trial, Going Into TIL Trial At NCI

Posted By
mrsaxde
12/5/2017 1:33pm
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Replies: 6

Well, I went to Johns Hopkins this morning to find out what was in store now, after getting my scan results showing increasing cancer in my lymph nodes. I was unsure about continuing in this trial if they wanted me to, since it was becoming obvious to me that I am getting little if any benefit from it. When I met with Dr. Sharfman it turns out my decision was made for me. Apparently he appealed to Bristol Myers Squibb to treat me for one more cycle of 4 infusions, but since I had shown progression two scans in a row, they said no.

He told me that he wasn't crazy about radiation followed by Keytruda, like my local oncologist had mentioned in the spring before I started this trial. He said that we could do oral chemo -- I forget the name of the drug -- which he said he has gotten good responses to from some other patients. But he said he thought my best option, and best chance at regression, was to participate in the TIL trial at the National Cancer Institute.

So we agreed to proceed with that, and he said he would set the wheels in motion. And that's where things stand with me at the moment. I'll admit to being a little frightened of this -- it sounds like I'm going to be in for a month or so of extreme unpleasantness. But I've read about this treatment and I'm hopeful that it will be the one that finally works for me.

As usual, I'll keep you all filled in.

-Bill

Bill, I'm sorry to hear.  Keep looking at potential plan Bs, including chemo which may be a bridge to another treatment.  It is very, very difficult to get into the TIL program at NCI.  Definitely worth pursuing, but need a backup plan.

That's not surprising to hear, considering the small number of patients they are accepting. Dr. Sharfman thinks I'm a good candidate since I'm younger and in fairly good health other than the melanoma. And I figure it can't hurt to have a doctor with his bona fides recommending me. So we'll see how it goes.

Best wishes Bill... I’ll be thinking of you.  At least when the doctors have a plan for you going in to an appt - it takes all the guesswork of various options out.  We all have to look on the bright side ;) xhugsx

- J.

Bill, I had posted on one of your other comments last week but my husband also goes to Dr. Sharfman.  My husband is just getting ready to start the Anti-Lag-3 trial next week.  He went thru the TIL therapy last February (2016).  If you have any specific questions or want to talk to someone that has been thru it let me know as I am sure my husband would enjoy talking with you.  NIH doctors and nurses are amazing.  While it was not an easy treatment the care that you get while you are there is unbelieveable.  The Discovery Channel did a 3 part documentary on NIH a couple months ago.  You may be able to find it online.  The actor Jim Parsons was the narrator and the film does a great job showing what NIH is really about - especially part 1.  Good luck - sending our thoughts and prayers!  - Stacy

Thanks Stacy! Alice, Dr. Sharfman's research nurse, suggested that I reach out to others who have gone through the TIL trial. I would love to hear more about it from someone who has "been there, done that."

I wish your husband success with the LAG-3 trial. What kind of benefit did he get from the TIL therapy? I'll send you a pm with my email address.

-Bill 

It seems I can't send you a pm. So here's my email: mrsaxde@comcast.net