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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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Best wishes on that biopsy.
Bravo!
@mnewland99 Gem-Nab, or Gemcitabine and nab-paclitaxel. I hadn’t heard of it either until @wpprescott mentioned it. VMAT is a form of radiotherapy, like SBRT. My husband’s cancer mutation is KRAS G12D and ATM. Hope you are doing well.
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1 ReactionFeel free to DM me. Very willing to share our experience.
He had targeted radiation Monday through Friday for 3 straight weeks. Caused so much fatigue that he was looking forward to getting back on chemo. Never had neuropathy yet. Having the Gemabraxane every 2 weeks vs 3 on, one off was a game changer as far as quality of life. They switched to every other because of low platelets. He gets a romaplastin shot every week now to enable the every two week chemo. He didn’t need the shots nearly as often prior to radiation.
He has KRAS G12V
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1 ReactionWonderful! Maybe that intense radiation helped. I had targeted radiation 3 sessions over a course of 6 days. My antigen was low normal for almost 6 months after that treatment. However, immediately after 6 months and 1 skipped gem chemo session a new lesion grew adjacent to the one that was ablated (radiated). My gut feeling is that maybe the margins for radiation were too narrow? I'll never know because I'm no longer with city of Hope, Irvine. I'm opting for histotripsy now. As far as your husband's treatment - I must say that's miraculous! My science background is always thinking black and white and what's logical, but sometimes I get thrown by stories by fellow members like your husband and @199 where I say there's something miraculous going on. I was on gem-abraxane (plus cisplatin for a few months) for nearly a year before neuropathy hit me very bad and I was switched to just gemcitabine. Wishing you both continued success!
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2 ReactionsOk, super embarrassing! The nab is abraxane, but at least I really didn't know what VMAT was.
I'm waiting for results from a contrast ultrasound to see if I qualify for histotripsy which also destroys lesions in the liver. I also have some peritoneal nodules which "feel" like they are continuing to grow; last Naliri session my ca19-9 indicated I wasn't responding it as it tripled to almost 9,000. I recall there can still be a peak after first treatment so I'll find how effective 2nd treatment was at this week's 3rd Naliri treatment. Wishing you all the best. I have your husband's mutations along with TP53 so mine very aggressive.
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2 ReactionsAre you testing for histotripsy on the pancreas, in the US, or elsewhere? We are very interested but have only found a trial for histotripsy and it's not in the US. We know it's being done for liver currently.
This is the chemo my husband is receiving for his PC, started 6/4, along with a clinical trial drug. He's had 3 chemo treatments so far, tolerating reasonably well, side effects are not terrible, but he's lost so much weight, eating (really digesting) is still an issue, he's very tired too, not able to do much, he has good days and crappy days.
What is Naliri?