Babs Posted January 20, 2022 Share Posted January 20, 2022 Hi Friends, Haven’t posted in a bit. I was doing a clinical trial of Enfortumab. It was working until it didn’t. About 6 months. I am now given 2 other trials to consider instead of standard of care chemo. One is FT500 through the University of Minnesota. They basically give you chemo to deplete your immune system to then inject you with NK cells and then immunotherapy. They have had some promising results with it. It is 2 cycles of 28 days and then on maintenance. The other is one through the Mayo Clinic and involves a pill called sondegib that has been used in the past for skin cancer. They are now coupling it with Keytruda in the trial. The one at the U is farther along but is quite involved as far as visits, possible side effects etc. The one at the Mayo is very new and involves multiple trips down there. I’m very confused about which one to go with. The U is closing but will take me, however if I don’t do it now I’m out. Does anybody have any experience with either of these or any input to help me make a clear decision? I hope everyone is doing good and feeling good. Thanks, Babs Link to comment Share on other sites More sharing options...
LouT Posted January 20, 2022 Share Posted January 20, 2022 Babs, I'm sorry you're having a rough time and (unfortunately) I can't give you any advice on Clinical Trials because I've not been part of one. I'm sure others will be sharing their experience soon, but in the meantime we do have a forum on clinical trials and it may provide some information for you and can be found here. Lungevity also has a page of other resources around clinical trials and that is found on this page. There is also a helpline that you can call with any information request and that number is 844 360 5864. I hope that some of this helps. Lou Link to comment Share on other sites More sharing options...
RJN Posted January 20, 2022 Share Posted January 20, 2022 Hi Babs, Tough one, and I am not sure I have anything groundbreaking to contribute, but am also on a trial (involving radiotherapy), so I know the pain of making these decisions. For what it is worth I have generally taken the stance that I will always go the non-chemo route if I have the option. I know many get through it ok, but it is really hard on the general health and I’d prefer to try other options first. Personally, Keytruda has been good to me with very few side effects and a very good response so far, and many in my various immunotherapy groups have seen good results w Keytruda combined w targeted treatments. But I guess we are all shooting a bit in the dark, so it is largely just a matter of preference. Hope you find what is right for you, Rikke Link to comment Share on other sites More sharing options...
Tom Galli Posted January 20, 2022 Share Posted January 20, 2022 Babs, The trial you sited in your post (FT500 through the University of Minnesota) sounds a lot like the Lovelace TIL Trial. One our distinguished members (Lexie Cat) was in that trial and created a complete body of knowledge about her experience. You can read about it here. From her description, one learns the trail was very challenging. I wouldn't know about the Mayo trial but the sources Lou cites are worth researching before making a decision. Stay the course. Tom Link to comment Share on other sites More sharing options...
Babs Posted January 20, 2022 Author Share Posted January 20, 2022 Thanks all, Turns out I’m not eligible for the Mayo trial as my cancer hasn’t metastasized. You would think the Dr would have known that up front before it was offered to me? So I will be doing the one through the University, the FT500. I’m a little anxious about it since it sounds very rough. I’ll start sometime early February. We’re going on vacation next week and the Dr wants me to regain some weight and strength. I’ll keep you all posted. Babs Link to comment Share on other sites More sharing options...
Karen_L Posted January 22, 2022 Share Posted January 22, 2022 You've got the guts for this, no doubt. Go get 'em! Link to comment Share on other sites More sharing options...
BridgetO Posted January 23, 2022 Share Posted January 23, 2022 True what Karen L says. Clinical trials aren't for the faint of heart, but neither is lung cancer. Yep, you can do this! Link to comment Share on other sites More sharing options...
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