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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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Oh yes! Revolution Medicine will surely be acquired by big pharma soon or do a very splashy IPO. I was on one of their investor calls. They are ready to go big or go home. It’s just sad that they won’t release the drug for compassionate use.
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3 ReactionsOncologist told me yesterday that they (pharmaceuticals) even planning to eventually distribute RMC6236 by itself and without having to use a systemic chemo, in tandem. This was very surprising news to hear especially as my oncologist was always advocating for a tandem I use of a chemo drug since this PC stuff can be very systemic.
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3 ReactionsR u about to begin the trial thst you discussed - being it mid/August?
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1 Reaction@mnewland99 I started the trial Wednesday. It was a very long day; left home at 6 AM and not back home until 7:30 PM. The pharmakokinetic testing (EKG's and blood draws) was spread out over 8 hrs. I felt pretty good during the 2 hr. Cetuximab infusion but things weren't great after that. Was achy and a bit chilled when I got home, went straight to bed, but didn't really sleep at all because of the aches and temp swings. Took my temp every couple hours and it was always a little high but never more than 100.3. Yesterday I had to pretty much lie low; digestion and bowels were off, and no appetite mostly from mild nausea. It's the same kind of nausea I have had for over a week since I started taking prophylactic Doxycycline. Called my doctor and she didn't seem too concerned. Appetite was a bit better last night and I slept fine and was feeling decent this morning. Went for an easy hour bike ride around 10 AM, came home to have some lunch and now I feel like I've taken a few steps back so back to the couch for the afternoon. Appetite gone, nausea, etc.
The irony of all this is the last 48 hours I have had more negative side effects from this than from 22 rounds of Folfirinox. Hopefully things will straighten out
soon. I go back next Wednesday but just for more monitoring/testing, then the following Wed I go back for testing and Cetixumab (that is every two weeks).
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6 Reactions@wpprescott
Is the trial based on RM6236 or RM 9805? 9805 is G12D specific.
Or is it similar acting drugs by another manufacturer?
Also, did your oncologist suggest Naliri instead of FFox as an alternative future step?
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1 Reaction@wpprescott, sounds like it's been a bit rough, but I admire the way you are plunging forward with that bike ride! Will your future bloodwork include any CA19-9 testing? Do your mutations express CA19-9 fairly well? Wishing you less nausea and good results in this trial!
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2 ReactionsHe's on cetuximab; not the RMC trials. Sounds promising; previously worked on colon cancer and head and neck cancer patients - slows down the growth of cancer cells.
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2 Reactions@mnewland99 My blood work every treatment includes both CA 19-9 and CEA. My CA 19-9 has never been out of normal range from the time I was first diagnosed with PC. One of the many puzzling things throughout all this. CEA has been inching up since May however; most recently 18.7.
@gamaryanne The treatment is QTX3034 (Quanta Therapeutics) a G12D specific inhibitor combined with Cetuximab. The other arm of the trial (that I'm not in) is just the QTX3034.
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1 Reaction@wpprescott - checking to see how you are doing... facing similar situation as in your original post..Pray the trial is working for you and side effects are tolerable
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2 Reactions@rockie66 Things are going OK with the trial so far, but the irony (as I noted earlier) is that my side effects and overall quality of life are worse than they were when I was grinding through 22 rounds of FFOX! Never a dull moment...
The negatives so far are that I continue to struggle with weight loss and digestion issues due to lack of appetite and fatigue, as well as a very dry mouth and lips. I did struggle with mucousitis at times when I was on FFOX so the latter side effect isn't that surprising. For appetite stimulation I have tried prochlorperazine (Compazine) and olanzapine (Zyprexa). I have my second long day of testing tomorrow and have been told there are still "other things" I can try that may help stimulate my appetite, including cannabis. On that note, does anyone have positive experiences with same (synthetic or edibles)? I can count on one hand the number of times I smoked weed in HS/college (early '80s) and I never recall the "munchies" being a part of that experience.
The positives are that I am sleeping well, have a very responsive and supportive care team at Yale Trials, and the skin rash has been well-controlled so far with Minocycline and Triamcinolone cream. It really isn't that bad/visible except on my nose. It looks a lot like a bad sunburn. The rest of my face and head (which is shaved and bald) have very small red blemishes that come and go around my face. head and neck. I apply the cream 2-3 times a day and always before bed and when I wake up in the AM, everything is almost cleared up completely. I do know the accumulated effects of Cetuximab will probably make it worse, but it is better than I expected so far.
I don't have a CT scan until Sep 19th to check for progress with the trial, but the nodule under the skin of my abdomen which is known to be malignant seems to be getting smaller. Maybe it's just a form of confirmation bias, but I am hoping I'm correct!
I am looking to connect with anyone on the same or a similar trial if you or someone you know fits that bill. I have never been a Facebook user but I did sign up so I could monitor some of the KRAS forums (including the G12D group) and it hasn't provided a lot of new information or contacts with others in my trial so far.
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