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Negative Turn in a Long Journey
I was diagnosed with PC in March 2023 just after my 60th birthday, and have frequently checked this forum, read most of the posts and responses here, and have taken great comfort and learned a lot from everyone's input. I am at an important crossroads in my treatment, however, and would appreciate any thoughts, advice and input you all may have. I am being treated at Smilow Cancer Hospital at Yale.
I had a small (1.9 cm) tumor in the head of my pancreas that restricted my bile duct and was also wrapped around the portal vein. I had 8 rounds of Folfirinox, the tumor shrunk away from the vein, and I was on the table for Whipple surgery on 9/25/23.
At the start of surgery, 5 small malignant lesions were found on my liver (even though nothing was ever seen on scans) and surgery was aborted. I started FFOX again and sought second opinions at UCLA, Mayo Clinic, and Frodetert/MCW which provided a lot of motivation for me to push on towards making surgery possible again. After 14 more rounds of FFOX (22 total) I was back on the table one day short of a year later on 9/24/24 for Whipple. This time it was a success. Eight hours of Whipple followed by 4 hours of portal vein reconstruction. I recovered very quickly (only 4 days in the hospital) and within 2 months was back to “normal” with only a few minor digestive issues to deal with.
My post-surgery pathology was as follows: Tumor: 1.5 cm, Grade G2, invades retroperitoneal soft tissue and portal vein. Perineural invasion present. Involves vascular bed/groove (corresponding to superior mesenteric vein/portal vein). All margins uninvolved by invasive carcinoma and high-grade intraepithelial neoplasia. 24 lymph nodes examined; 1 involved. Staging: ypT1c N1, at least Stage IIB. Tumor testing showed I have the KRAS G12D mutation.
My “secret weapon” throughout all this has been my physical health. I was a competitive cyclist and runner for over 40 years and I had very mild side effects during the 22 rounds of chemo; always ECOG=0. Throughout the last 2+ years I have continued to ride my bike, walk, jog, swim and do the occasional weight workout or yoga, on average about 10-15 hrs./week.
As you can probably guess, things have taken a negative turn recently. My first two sets of post-surgery check-up scans were NED but a May CT scan showed (and a PET scan confirmed) suspicious areas–soft tissue attenuation around the celiac/hepatic arteries, thickening of the left adrenal gland, an enlarged lymph node adjacent to the superior mesenteric vein, and a small lump in the wall of my abdomen. The lump appeared 2-3 months after surgery and is right at the incision where one of my abdominal drains exited. I had it checked out back in January and it was deemed scar tissue. I am having it biopsied tomorrow so at least I’ll know if that's the case.
So finally to ask my question(s). Where do I go from here? My options at Yale are a drug trial or back to chemo: either FFOX or Gem-Nab. I know what living for Folfirinox is like but also know the side effects of Gem-Nab might be even more tolerable. My oncologist said normally she would recommend Gem-Nab but since I haven’t had treatment for over a year (last round of FFOX was May 2024) that it’s “up to me”.
There is a KRAS G12D drug trial at Yale (ASP 3082) that I hoped to get into but there’s no space right now. I am still waiting to hear if Yale has other KRAS trials available. I have a list of other trial options at MSK and Dana-Farber since both locations are relatively close by. I would be willing to travel even farther afield for a trial if I could manage it.
Thanks for taking the time to read my story and for any thoughts, personal experiences or other things you have to share.
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You mention mutations, TP53, KRAS G12D and ATM. What tests are done to find these out?
Histotripsy for pancreatic cancer? We thought this was just in trials, and not US trials?
Since your CA19 levels are low, I was wondering if you have acinar cell pancreatic cancer or ductal cell pancreatic cancer? I have the acinar cell type and my CA19-9 levels have remained normal. My oncologist told me this is normal with the acinar cell type.
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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2 Reactions@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.
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6 Reactions@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..
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5 Reactions@gamaryanne Thanks for your response and the positive thoughts! The details of your trial experience(s) are very helpful. I had some knowledge of the way the worked and knew that getting out was easier and more flexible than getting in but it's good to hear first-hand that is the case.
Per your questions; to summarize my situation...
I had 22 rounds of Folfirinox. Eight then a pause for Whipple, which was aborted, then 14 more followed by successful Whipple. My last chemo treatment was May 2024.
Side effects were very mild. I was ECOG=0 for the most part. The chemo shrunk my tumor by 50% which allowed me to become respectable (portal vein involvement was too great initially). I also was able to move from Stage IV to surgery when the FFOX eliminated five lesions found on my liver during ex-lap before my aborted Whipple.
My oncologist feels that enough time has passed that a chemo restart of FFOX would be "new" to my body since so much time has passed, but she also stated trying Gem-Cap would also be reasonable. I could always go back to FFOX if that wasn't effective. I did have a genetic mutation that has shown a tendency to correlate with a good response to FFOX. RAD45L
FoundationOneCDX shows I have the KRAS G12D mutation but nothing else of value related to trials or other treatments. The trial option presented to me is brand new Phase I/II, with two arms. I will have more details soon but one arm will be the drug alone and the other arm will be the drug + another therapy. https://clinicaltrials.gov/study/NCT06619587
The Yale coordinator of this trial is going to call me later today to discuss the details further. She gave me her personal cell phone number a couple weeks ago when I had an initial consultation with her. What doctor ever does that?!? I try very hard not to bother her but I have texted her with questions and she responds right away.
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3 Reactions@mnewland99 Thank you for sharing. You are correct; my chemo was all neoadjuvant. They did not recommend any after Whipple.
That's definitely a different train of thought as far as no chemo after surgery.
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1 Reaction@mnewland99 I was initially surprised at the no adjuvant chemo decsion as well. The explanation was I had already had 22 rounds and more was overkill. As with a lot of things with this/our jouney, no reason to look back with regret. Just keep looking forward and making the best decisions I can using as many resources as possible.
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