Lisa Haines

I have taken Probiotics for years (long before cancer) and continued to take them while I was on Immunotherapy. When I first started it, it had just been FDA approved, so the question of probiotics was never discussed, nor was I ever instructed to follow any special type of diet. I had AN excellent response to Immunotherapy (Opdivo), but have NO idea whether or not the probiotics played ANY role in it. I do know that some patients started to add probiotics while on immunotherapy and if I remember right there were later studies that found it had no effect and might actually make the treatment less effective?? I would guess at this time, we are still learning and will continue to learn, as these drugs are still relatively new and have only been been FDA approved for a little over 5 years now. Much has changed since I first started on Nivo and we've continue to learn more and more about new side effects and how to best treat them. I personally, do not feel that there is any "specific diet" that is needed to do well in a cancer journey. Nonetheless I think it's always wise to try and follow a healthy diet and avoid processed foods and high amounts of white sugar and unhealthy fats. I ate and still eat foods that I like and foods that taste good. Pretty much anything, but in moderation. I know many people may disagree, but in my case this had worked well and I'm not going to change now. As the old saying goes "If it's not broke, dont' fix it".... My tastes changed significantly since cancer and I have a lot of fatigue and random bouts of nausea (despite now being stable). The fatigue never ends and makes it so that I'm much to tired to spend a long time in meal preparation, especially dinner, because my fatigue really hits by late afternoon and I'm just too wiped out to then spend hours making dinner. My hubby thankfully is also self sufficient and we tend now to eat our "bigger" meal at lunch (versus dinner) and often have a late lunch and small dinner. I also no longer like many foods and eat pretty "bland". I drink a LOT of water and keep well hydrated. I eat when I'm hungry and sometimes have to kind of force myself to eat, if I am having one of those days with nausea. e have not been able to find 'any' medical reason for the nausea and all my abd scans are clear, so that is happy news. I am very lucky that I'm not on a treatment that requires me to take it with food because I do not eat 3 meals daily, mostly one main meal with snacks and such, when I feel hungry. I do not have a good appetite and haven't for a long time now. But ther are days when I'm very hungry, but I find once I start eating, I also get full quite easily? I have no idea why my tastes have changed to much or why they never went back to normal after I stopped treatment (Now almost four years). I used to love my morning coffe, but now can't stand the taste or smell and haven't had any in over five years. I also do not like any kind of spicy foods or lots of sauces. I hate the smell or garlic and don't even like the smallest amount of "ground pepper" on ur used to prepare food and if it's been used I taste it immediatley and can't find whatever it's in. When we do get food delivered or eat out, I'm always ask the cooks to avoid any ground pepper. The only seasoning I use is lemon or sea salt a few types of salad dressing. I do love fresh seafood and living on the Mass Coast, I'm lucky that we can find it here fresh off the boat. I'm do not care for most processed foods and rarely eat them. I guess it just goes to show that NOT all studies fit all patients and like much in our lives, we are one "treament" fits ALL! I know some people will say I have a lousy diet, because it's so limited, but I do also take daily multi vitamins and supplements to try and make sure I'm not missing anything vital. I wish I did like more foods, but cant' seem to change it at this piont. I've never been a very adventurous eater and prefer to stick with what I do like and know tastes good. Just curious IF others have found the need to totally stop eating certain foods after they were diagnosed or after taking a certain treatment.

May and Jack I have KRAS (12v) and currently there is NO FDA approved drug for this mutation. There are two Clinical Trials for KRAS 12C that seem to look promising, but they would not work for me, as I did not have that Variant. As a follow up, I met with my Oncologist last week, after my scans for results and happily I am still stable and my GGO (Ground Glass) continues to improve. He is thrilled with my results and feels based on my long term response and date from the clinical trials, that I should continue to do very well for many years. He also said that at this point (now over 4 years stable with any treament) that IF I did develop cancer it would MOST likely be a totally new cancer and may now even be KRAS+. And IF I do have any signs of any new cancers they would do a new biopsy and full genomic profile. That was very interesting and exciting news. NOW I hope I am going to remain stable, and if for some reason I do develop a secondary LC, I'm going to hope it's not KRAS again. As for NSAIDS, I can no longer take them or aspirin, due to GI issues from long term use for many years for pain due to Fibro and long term degenerative disc disease and also becaue I'm on blood thinners. I am now on a pain patch which is opiate based, but it's necessary for me and I've adjusted to it at this point. Hoping once I get get the hip surgery I can slowly taper off it or at the very least decreased my dose. I spent years trying to find the right meds for the most significant pain management and it was a Palliative Care Team that was able to help me figure out the best options. I do not like to take a lot of meds (even though I'm on quite a few, but sadly with some illnesses it is necessity). Best wishes to you!

Josh, Hope to connect with you at the Virtual Event -- it's FREE and Open to all -- Registrations is required -- https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=947 Looking forward to it and having seen the agenda, it sounds wonerful! Lisa

Looking forward to seeing you all!!