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@mnewland99

I'm very glad to hear your effects from Naliri are minimal. Is it lowering your ca19-9. I'm doing very bad now. Naliri affected me horribly; particularly my breathing. I have to take a breathing treatment a day now just to be able to breathe, in addition to my inhaler which I typically use 2x per day, anyway. It gave me a horrible heart arrhythmia and the nausea was out of this world. I won't take it again. I went 1 month with no chemo and my cancer spread like crazy. Several lesions in my liver and a lesion that was 0.5 to now 0.7cm bext to lesion that was radiated last October. I'm very curious his this could happen. Was it that the margins radiated in October were too small? @stageivsurvivor please chime in on this. I too am wondering if histotripsy is now an option and I see exactly what your drs are saying. My cancer is very systemic now and very aggressive. It went from about 324 to almost 3000 in the 1 month I had no chemo. All the lesions in liver are new so I asked the place where u had planned to get histotripsy if was worthwhile now if there was any point now to get it and they said they had already gotten the appointment approved but I'm wondering are they really doing this for my benefit and my gut feeling is no. Originally, I had 1 suspected lesion in liver too small to be seen in scans, but activity visible in a PET scan. Do this disease has spread to the peritoneum now. Several nodules all across the abdomen. Pain intensity and frequency are increasing more and more everyday. I feel much more sick like this disease has finally got me now. I wonder 1 month ago had I been given the gemzar I requested at city of Hope would i be in this position? The dr didn't want to give it to me; I had refused the Naliri because I had read about it's potential to cause interstitial lung disease and wanted more info. My dr at Hope denied knowing anything about those potential side effects - I didn't believe him because he was a very learned dr. He wouldn't give me gemzar that day because it said it was no longer working. Not true in my opinion! It couldn't decimate cancer by itself, but it kept my numbers from climbing so fast. I told this to the PA but dr refused. I let drs know about the breathing g issues but I have heard anything back about an alternative plan to Naliri. This is a systemic disease and those with aggressive mutations need aggressive treatment which includes chemo. Your drs are probably right about histotripsy being nit the best option for you. In my humble opinion, it's a life extender for those that don't have lesions or nodules in any other place and only have 1 or 2 in liver. With all my garbage in the abdominal peritoneum now, I believe it would be a waste of time for me at this point. Best wishes to you dale. It sounds like you have a good team.

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Replies to "I'm very glad to hear your effects from Naliri are minimal. Is it lowering your ca19-9...."

@mnewland99
Marie I'm so sorry to hear of your problems! Can you look into getting on an RMC-6236 trial? It is systemic and all my doctors are recommending it. Do you know what kind of KRAS G12 mutation you have?