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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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Things seem to be falling into place with your treatment.Happy for you. I tried to get into the Moonray trial but the pancreatic cohort filled immediately. Talked with a great oncologist at U of C who recommended bridge therapy and contacts for clinical trials.i have a little bit of hope again.
Good luck to you.
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2 Reactions@wpprescott
I did fulfurinox most of 2022 prior to my pancreadectomy and liver resection. NED for about 6 months then a small spot showed up. When on Gem/abraxane. For me, a KRAS G12D, TP53 patient, it has minimal results but got me to an ablation to remove spot about 4 months later.
NED again for about 7 months. Then did RM 6236/9805 phase 1 trial. Effective for about 6 months until progression at my liver resection area. Interestingly, once off that and new scans, a pulmonary embolism and small spot showed in my lung. SBRT eradicated it (was it even cancer?). Now working on liver spot with Naliri and just finished SBRT.
I share all of this to wonder has anyone figured out which drugs are better for KRAS G12D? Gem or Folfuri?? Or is it the oxy/cisplatin that does the trick?
I am also at a crossroads and will be meeting with 3 noted doctors over the next few weeks. I would suggest you speak with Dr Kamgar at Wisconsin. I met her at a Seena Magowitz event and she was very impressive and doing some creative approaches that seem to have great validity with repurposing drugs already FDA approved.
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2 ReactionsRecent pre-clinical studies on mice exposed to large amounts of oxaliplatin resulted in tumor conversion which is what was suspected in what happened in my case of dealing with stage IV disease and then able to eradicate minimal residual disease. It was found that the oxaliplatin caused immunologically cold tumors to exhibit neoantigens on the surface of the tumors. This made them recognizable by various immune system cells-two important ones were TCR lymphocytes and CD8+ memory T cells which surveil the body for several years to clear MRD from tissues and organs as well as the circulation. I did 24 cycles of Folfirinox at full dose.
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3 ReactionsI guess it's high time for me to file a report on how things are going. I have completed 3 two-week cycles in my QTX-3034 trial and things are going well overall. My first CT scans showed stable disease in my abdomen and peritoneum, and the small nodule under the skin of my abdomen has shrunk noticeably.
The side effects from the trial drug and cetuximab infusions has been a bit of a challenge, but things have improved and are manageable. The skin rash that most everyone gets from the cetuximab started out as moderate on my face and neck, but prophylactic Minocycline and triamcinolone cream have worked well, and at this point I have more dry skin to deal with from the cream than I do rash. My lips, nose, fingers and feet have also suffered a bit from dryness and cracking but that too has been well-controlled with moisturizer.
Digestion has also been an issue but again thanks to the flexibility and help from my trial doctor and APRN that has greatly improved and is under control. After my Whipple surgery a year ago I didn't seem to need pancreatic enzymes but after a couple weeks of the trial and bouts of moderate diarrhea and indigestion, adding Zenpep to the mix a couple weeks ago has straightened everything out for the most part.
The last two issues I am still battling a bit are appetite and fatigue. I am taking a low dose of Zyprexa daily and that seems to have made the most positive impact on my appetite. I have also tried Compazine and THC (both drinks and gummies) and neither have made a huge impact. At this point I pretty much just so with what tastes good at the moment even if it isn't the highest quality food. I have lost about 10 pounds but I have stopped that trend and am working at clawing back some weight. I have also found out that I don't process dairy well, so cutting back and watching that has helped. As far as fatigue goes, I am still able to get out and walk and ride my bike some, just not with the same regularity as usual and ironically not even at the same level as when I was deep in the Folfirinox hurt locker during my 22 rounds of chemo, pre-surgery.
So overall I'm pretty pleased with how this is going. I hope the trend continues; my next check-up CT scans will be in about four week and I'm crossing my fingers that the trends continues in a positive manner!
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12 Reactions@wpprescott Hello! Would you mind sharing what stable dosage of QTX-3034 you are on?
My wife just started the Phase 1 Study for the G12V-specific RAS(ON) inhibitor, QTX-3544, from Quanta Therapeutics this past week. She's at what seems to be a very high dose of study drug (over 2.5X) as compared to the Pan RAS RMC-6236 from Revolution Medicines. I don't think they are to the point of using the cetuximab yet in combination in her trial because the it just started in April.
They have to go to high dose levels to test the maximum tolerability level, but it's giving her really bad nausea/appetite suppression and really zapping her energy - pretty similar to her FOLFIRINOX experience at this point. I have been wondering if the ultimate (and hopefully) therapeutic dose will be less than what she is on now and having some kind of reference point would be really helpful!
I'm glad to hear that you are getting some positive results with disease control and wish you the very best!
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1 Reaction@vannkraken My dosage is 1200 mg BID. I'm in the 1B phase and taking what was established to be the maximum dose in the initial part of the trial. Pretty much every side effect I have dealt with has been explained by my doctor or APRN saying "it's probably from the trial drug". The exception, of course, is the skin rash which is almost a given with Cetuximab.
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2 Reactions@wpprescott Thank you! Appreciate the information very much. I'm really surprised how much higher the dosing is (my wife is currently on 800 mg daily) versus RMC-6236, which is at 300 mg daily in the current Phase 3 study.
I guess it's possible that the specificity of the Quanta molecules targeted at individual mutations allows the dose to be pushed higher than Pan Ras inhibition, which may impact more non-cancerous cells from a side-effects perspective.
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