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Negative Turn in a Long Journey

Pancreatic Cancer | Last Active: Oct 1 5:03pm | Replies (102)

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An update, some good some bad...

The bad...the biopsy of the nodule under the skin on my abdomen is malignant and consistent with the known tumor that was removed during Whipple. I also had a CT scan yesterday to compare with the 5/28 scan and for the most part everything is stable or slightly progressed. Which I guess is sort of good news since that means there has been little growth in a month-and-a-half.

The good news is there is a new trial at Yale I am eligible for and should be able to get into soon (2 weeks or so). I'm talking to the trial coordinator about it more sometime this weekend but what I do know is the drug is Genentech GDC-7035. https://clinicaltrials.gov/study/NCT06619587?id=NCT06619587

So more advice needed now. How exactly does one (me in this case) go about deciding to start a trial now vs. going back to SOC treatment and looking for a trial when/if that treatment stops working? I know there's no easy answer to that question but please share any opinions or experiences you have.

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Replies to "An update, some good some bad... The bad...the biopsy of the nodule under the skin on..."

@wpprescott I see no one has responded yet; not surprising as that is an extremely personal decision; this is a fairly new trial and type of immunotherapy attack? Hoping someone on this forum has had experience with this trial; or someone like @stageivsurvivor with his research and advocate background might be able to help you out. @markymarkfl has done a lot of research and seems to have an excellent grasp of how some clinical studies attack cells, so maybe he will chime in. Personally, with my spread to the peritoneal area that is finally growing following my removal of abraxane and only bring on gem has forced me to go another fairly new, SOC, Naliri/5FU. I've only had 3 sessions so far and my second CA19-9 proved disappointing. According to a contrast ultrasound, I have 2 lesions over 3cm each in length, and when I started I had 1 lesion at 0.7cm. I had the peritoneal nodules with the largest at 1.5cm. A recent noncontrast ultrasound only proved I don't have any ascites in my upper abdomen which is good news. I considered going back on gem-abraxane 2 weeks ago, but my oncologist said I had to wait 6 months from my last treatment which was around mid- January 2025. I think I'm there now! I'm going to try histotripsy to get rid of the liver lesions knowing it's probably not a permanent solution even for the liver, but at least in my mind, it will slow down my body from getting sicker; and gives me more time to fight the peritoneal nodules. I also am meeting with my old UCLA oncologist who is well versed in peritoneal carcinomatosis and is going to tell me about a new study that will attack the cld18.2 protein which I have tested positive for. This is my Hail Mary! It seems like you didn't have any systemic, IV chemo, following your surgery?? Best wishes in your journey.

@wppreacott
I did a clinical trial this year and am always looking for the next one that may make a difference or at least prolong my life until other things are available.
I have no advice on this trial and really, without knowing your history of SOC treatments, surgeries, time lapses in between, genetic make up… so many things to be considered as to how you might fare. Phase 1/phase 2 trial?

BUT-I can say this. All trials allow you to back out at anytime. You will be followed very tightly with scans and labs-some labs that your Onc is probably not doing. If progression is noted, the trial will alert you and ask if you want to discontinue-although it will be your choice .
My latest visit with one of the noted specialists in the U.S. tells me that immunotherapy for us isn’t quite there yet. But perhaps, with your genetic make up, you are a good fit!!
If your doctor is recommending it, go full steam ahead, learn all you can, then pull out at the last minute if your intuition tells you it’s the wrong direction.
Trial slots are often hard to come by so hopefully this one is meant for you.
Pls keep us posted. We learn from each other. Congratulations on finding yet another possible path..