u/PanCantGetMe

I was on the Daraxonrasib for a month and then had the embarrassing poo in my panties while sleeping through thing. Doc said take a 7 day break and then start back onto the drug at just one pill the 150mg dose. I start back tomorrow. My gut has done a full reset. No diarrhea and normal urination which I don’t think is something we talk about enough. These side effects can be devastating and debilitating. I’m glad for the little break but I want this drug very badly and I want it to work. So hoping that this reset helps and maybe the lower dose can keep things somewhat okay. I don’t know if I’ll be able to go back to the full dose again but that is the plan depending on how my gut does over the next week. End of August is my next oncology appointment and that is when we will get our first set of images since starting the drug. I’m hopeful and grateful for this opportunity. All other chemotherapy options have failed me at this point. So, I have some hope that this is working and will for a little while to give me more time with family. I am anxious to restart given the extreme GI issues I had, but happy for the little break and ready to see if any of it has been worthwhile.

I went to bed early tonight and when husband came to bed, I awoke to having diarrhea in my panties. I slept through the whole thing. Just when I felt like the horrors of this disease couldn’t get any worse, I’m now on Amazon ordering incontinence pads for the bed. I’m fully blaming this on the continued Daraxonrasib GI issues that I have been having. This is a total first for me and it is once heck of an embarrassing doozy. I knew that as the disease progressed these things happen but I was not ready by any means.

I have been lucky enough to get on Daraxonrasib. After stopping chemo in October of 2025 after being diagnosed stage 4 in May of 2025. Went on hospice in January of 2026. Pain was the thing to keep under control so I opted for a celiac plexus ablation in April 2026. It helped the pain but I had a rare side effect of persistent and constant diarrhea. Took me months to get that under control. Had a 5 day stay in hospital in June and I really thought this is it, this is my end. I don’t have much time left. I felt much better when leaving. Got me eating again, pain under control, and diarrhea taken care of finally after starting octreotide. We had previously tried Imodium, limotil, colestipol, etc… so many things but the octreotide it finally did the trick. Now I’m grateful to have the opportunity to go on daraxonrasib and have now been on it for a month but I’m back to fighting diarrhea and gas. Basically a fart cannot be trusted to be just a fart. So doc has started me on tincture of opium and it tastes disgusting but it is helping. I’m not constantly in the bathroom but still having so many episodes and the gas is so bad. I’m working with the doc but I’m just so over this diarrhea. Makes me want to stop the drug altogether but I have more energy and I can tell it is doing good things. But what good is it if I can barely get more than 5 seconds from a toilet? I just need to complain and cry a little because I am super grateful to be on this drug I just need better quality of life benefits like the diarrhea under control. I’ll reach out to the doctor but I’m just so feeling defeated by the whole thing today. Been fighting strong since August of 2024. Sometimes the fight just feels super heavy. Doesn’t mean I want to stop just means I wish I could put it down for a few days or just have a few normal days. If I could just get this under control it would open up the possibility to enjoy the life this drug is giving me.

This stuff tastes diabolically disgusting. Do you take it with something, chase it with something? How are you making it palatable? Cause I have never taken anything that tastes quite this disgusting…

I have been on Daraxonrasib for about three weeks now. I can attest the GI issues have been a problem we are working through. I’m on 500 mcg of octreotide and waiting to get a script filled for tincture of opium that I hope also helps. In the meantime, I get some reliefe from coleatipol, three limotil, and two Imodium ad with anti-gas. Instead of over 20 episodes of diarrhea, I get between 5 and 10 with this regimen. Now to be honest part of it is not just the drug, I had the celiac plexus ablation done in March and persistent diarrhea was my parting gift from that procedure. We had it under control with just the octreotide but now we are fighting it again with taking the clinical drug. I have broken out some like I have acne in my T-Zone on my face so I have updated my skincare routine to include the hydrocortisone cream and acne type facial cleanser. I’m also concentrating on a good amount of hydration from my moisturizing routine to make sure I don’t dry out too much from acne medication and hydrocortisone cream.

The plus side, I have had more energy. Enough that makes me feel more like my old self again. Like I can do things other than sleep. I was sleeping most of the day and awake for maybe like 4-6 hours and not all at once prior to the drug. Now I am up most of the day with an occasional nap depending on how busy I was during the day. It is a blessing. I have scan coming up, I think in August and a decision to make whether to move from my short term disability to long term disability. Part of me feels like I can go back to work part time if this energy keeps up and things continue like they are on this clinical trial drug. I’m optimistic most of the time anyway, so I’m hoping a return to work is what my body will allow. Going to give my body more time to see how the drug is working though. Hopefully, imaging is on par with how much energy I feel like I have been having.

This is the one device you did not know you needed. For those of us that get the GI upset while on chemo or any of the other myriad of treatments we are on this one has been hands down the best going I own. I have the biobidet 2000. It has a small holding tank for water where it warms it so there is no cold shock therapy when rinsing. There is a built in fan for drying the tush when it gets extra sensitive. The toilet seat can be warmed too. It has seperate nozzles for cleaning front or back and can oscillate back and forth to help clean. No, I am not endorsed or get any kick back.

Since the celiac plexus block I have had constant diarrhea which we finally got under control with 200 mcg of octreotide. Now since I’m taking the Daraxonrasib, the diarrhea back in full force and we are going up on octreotide until we find a happy median again. But this one device has been amazing at keeping me from having worse issues around my bum bum.

So far, I can report that I feel like Inhave more energy when I am up and moving about. I don’t have the facial or chest rash although I can see a difference in the redness and feel of the skin on my face. Applying the hydrocortisone cream the doctor gave me started that yesterday. My only complaint is it has brought back the diarrhea which I had under control with 200 mcg of Octreotide three times a day. Dr has upped me to 300 mcg but so far have not seen a slowing. Yesterday, I decided versus taking the pill at 10 am, I would take it at 9:30 pm when I go to bed. So we’ll see if that helps. I had over 20 episodes most days and that was with limotil and Imodium AD.

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?