nmorgen wrote:I was also wondering if anyone knows if there is another forum or group that deals with people on immunotherapies? Even if they aren’t necessarily crc. I have had a difficult time finding anything. I have tried joining other cancer groups on FB, but they don’t seem to be very informed about cancer treatments in general and especially immunotherapy. I just feel a little in the dark. I am praying that this therapy works for my husband, and if it does I know it will be a long term thing. I guess I am hoping that there will be others that I can talk to and get advice from.
As you can see from Jacque's post this is fairly new stuff, and generally not used routinely yet in CRC. It shown quite a bit of promise, however particularly in other cancers besides CRC, so it has a good shot. The Standard of treatment that Jacques refers to is FOLFOX, FolFiri and sometimes Folfirinox, augmented sometimes with or Avastin or an EGFR inhibitor. As a former Anticancer drug discovery chemist, I know it takes a LONG time before these therapies make it to standard practice. We are really just starting the age of personalized medicine, tailoring treatment to the individual rather than type of cancer. The fact of the matter is every cancer even within a particular type like CRC is unique to the patient, having characteristics unique to the individual. Mets often have a different make up of mutations than the primary for instance. It wasn't all that long ago that even the FOLFOX therapy was debated as to how many cycles 6, 8, or 10 one should use and its frequency every two or every three weeks, and if 5-FU should be given in a bolus dose in addition to the pump. I am still surprised that the use of Avastin in still not standardized as part of the standard therapy as by now there has got to be ample evidence of it being beneficial in combination with FOLFOX and FOLFIRI.
I think you will find the forum here has really good information as we tend to share and critic what we learn. I and others including DK37's prior to his passing try to dig out as much of the latest research we can find. DK was another cancer researcher and member, that was planning his own immunotherapy trial before he became too ill to initiate his trial. I was a care giver to my wife, and we have had other members that had researching skill such as Miai ,she wasn't a scientist but an editor, I believe, that was really great at finding new research papers - I miss her as she often brought attention to us all about new research that we could further look into.
So there is a lot of useful experience floating around in these forums from many that are gone but who provided wisdom to share. Despite my wife's passing - I still come here and contribute what I can.