u/PanCantGetMe

Got the news yesterday that I was approved!spent today doing labs, EKG, and an Echocardiogram. Passed with flying colors and I am now the proud owner of a 30 day supply along with about 7 other medications spanning from antibiotic, steroid, creams for face and body, and mouth rinse to combat the most reported issue of skin rashes and mouth sores. One of them you just start prior to daraxonrasib so I plan to start it officially tomorrow. Today has been a very long and exhausting day. I’m nervous to start. I’m not feeling the excitement though that I thought I would. Just more trepidation. I’m honored to have this chance. I know it isn’t a cure but what if the side effects are just too much. I want the extra time with family but not at the expense of quality time. I think that is where the trepidation comes into play. I’m definitely going to give it a whirl. We’ll see oncologist again in two weeks and in two months repeat my scans. Pray for me. Pray that the drug works and that the side effects are nontrivial to live with.

My oncologist called today and would like to put me in for compassionate use of Daraxonrasib. I have been off chemo now since October 2025 and on hospice since January 2026. But recently signed out of hospice so I can have a check up with oncologist and get new scans. I feel like something significant has changed in my disease progression recently. I am not able to eat much. Barely getting by on soups, ramen, applesauce, pudding, jello, etc. anything of more substance gets vomited back up without warning almost immediately. After my celiac plexus ablation in April, I developed the rare side effect of persistent diarrhea which we have not been able to control. Doctor is working on octreotide to see if this helps the diarrhea. I’m on a fentanyl 100 mcg patch which I change out every 48 hours because it does not last the full 72 hours. This controlled my pain quite well for about 3 weeks and now I’m having breakthrough pain that has me taking meds about 4 times a day even with the patch. I’ve lost 24 lbs since the celiac plexus ablation. The diarrhea is kicking my butt and the. Add in the new complication of not being able to eat much of substance. I think my scans are going to tell me that I have blockage of some sort or a tumor is coming close to causing a blockage. So health wise I’m struggling really hard right now. Dehydration has been terrible and hospice will not allow hydration services (IV) so I have been paying for those out of pocket. That helps tremendously, IVs for hydration especially given the diarrhea. I just feel like my body is at an all time low of sorts energy wise and otherwise. I just don’t know that I can take on one more thing like trying this drug to see if it helps. It’s not a cure by any means. I would love more time but my body already feels so broken right now. It’s a tough choice.

Any one currently on Daraxonrasib? What are your impressions?