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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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@wpprescott Side effects vary and you can either feel like a teenager or you may not get side effects. Other than loss of hair, my husband had very few side effects from Gem-Abraxane over 15 months. The subsequent radiotherapy to deal with local recurrence was terrible and 3 weeks after the end of that he is still having side effects. So everyone is different. You sound positive and that is a good start. All the best!!
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3 ReactionsThanks for the positive thoughts @joiedevivre . I also had very mild side effects from my 22 rounds of FFOX before Whipple. My concerns about Cetuximab relate to the "near certain skin issues" as my trial doctor put it. Probably not a lot of people here in the PC group would have experience with the drug since it is mainly used with colorectal and head/neck cancers, but thought I'd ask anyway!
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1 ReactionI don’t know if this drug is another name for a check point inhibitor I was on. But its side effects were all skin related. No bad labs!
Face and scalp breakouts with blistery spots and infection in and around nails. For the fingers, soak in vinegar and warm water.
Prescribed doxycycline for face which did help. Not unmanageable, just a little unsightly😊. It could also be really dry skin. Many oils and lotions for that.
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3 Reactions@mnewland99 - came across this very informative thread as I am also dealing with newly found peritoneal mets from PDAC... do you recall what the UCLA trial targeting CLDN 18.2? Thank you!
I am currently on G/A but it hit my labwork so hard and cause anemia/fatigue. Praying for everyone in this thread!
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3 ReactionsTargeting cld18.2 positive patients with new cancer drug, TORL-2-307-ADC in patients with advanced cancer. This is a phase 1 study and UCLA Dr. Zev Wainberg, Santa Monica is conducting this research study. It's a 2 part study with part 1 it's given as a single agent. In part 2, the MTD (maximum tolerated dose) will be determined. It's for those with advanced gastric or gastroesophageal cancer. 30 participants in phase 1 and up to 80 in phase 2.
They are recruiting now so if interested give dr Wainberg a call. Please post if you decide to try this trial and wishing the best for you. I'll post if I find a clinical trial that I qualify for.
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1 ReactionBy the way did you know there are certain mutations associated with peritoneal cancer? I repeated my blood biopsy or the Guardant 360 test and a new mutation has been found: SMAD4 which I read is associated with peritoneal cancer and just another mutation along with the others I have KRAS12D, TP53, ATM(VUS) to make fighting this disease that much more difficult as it is resistant to chemo and radiation. Thank goodness I had histotripsy instead of the targeted radiation! I'm trying gem-abraxane once again, but I'm not ignorant to the fact that because of SMAD4, it might not work this time so I am fervently looking for trials that look promising to me that I might qualify for.
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1 ReactionCan you explain why you feel that targeted radiation would have been a bad choice?
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1 ReactionOnly because when you read up on SMAD4 it says it's resistant to chemo and radiation. Naliri did not work for me at all while it did for others even if it was just for a few months. My CA19-9 went up by the thousands every 2 weeks. If you read up on each particular mutation and can somehow comprehend the studies on why biochemically they are a mutation and you realize that you keep layering your bodies defense mechanism with these mutations there is a point where chemo and radiation just won't work. It's rare I think, and happens when you have several mutations as I do. I'm not giving up by any means! RMC6236 looks promising and now I'm so irritated wth my accountant/auditor son's advice not to invest in its stock - ha ha!!! Though I have no idea if it's going up!
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2 Reactions@mnewland99 thank you so much - I haven't had CLDN 18.2 tested so far and hopefully still have some previous usable tumor slices left. Did some quick research and this categories of trials seem to have lots of side effects (vomiting, diahhrea etc.)
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1 ReactionYes, staff did warn me about the nausea and vomiting and since I live in coastal Orange County, the drive to Santa Monica just wasn't worth a phase 1 for me; but I applaud anyone else willing to do this.
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