Pancreatic Cancer Group: Introduce yourself and connect with others

Wow! Down to 8. That is great. I guess they call it radiologic remission instead of NED now?
Whatever. We know that we must be on alert and continue to scan quarterly at least!
I took a one month break from chemo in February and started back on gemcitabine alone. Upcoming scans will tell the story but I have to believe it was a healthy decision. If a new occurrence has popped up I will know that it is still active and have yet another data point to track the disease. I hope yours will stay in remission and you can look forward to enjoying Spring!

@gamaryanne , It will be interesting to compare notes and data points. On my GAC chemo recipe, they reduced the Abraxane by 15% for my two biweekly treatments in January (Gem and Cis still full dose), with slight increases in my CA19-9 each time (from low 40's to low 50's).

In early Feb I had to miss a treatment (because of Covid, on my birthday no less), so it was a 4-week interval before I got infused again. CA19-9 was up to 131 by then, so I restored the full dose of Abraxane for that treatment. Will find out this Friday if that did anything for my levels.

I also had scans last weekend, and results showed growth after consistent shrinkage in the 4 main tumors we track. Not sure if it was due to the Abrax reductions, the missed treatment, new drug resistance, or none/some/all of the above, but I'm scared as hell now to skip or reduce anything.

Also had Tempus testing done (finally) on my Whipple tissue from 1.5 years ago. We knew about my germline ATM mutation from the outset, but Tempus also identified a somatic KRAS G12D mutation that Guardant never picked up from the blood-only test.

@199
Sounds like you did everything and I’m praying you get news at your appointment!

@markymarkfl
Remember Chemotherapy likes to follow the laws of physics or Newton - “what goes up must come down”.
Over 90% of Pancan patients have the kras12-D mutation and there are clinical trials out there for it but you will need to the research where they are. Did you take paxlovid when you had covid?

I will never have a disease caused by being vegan, that is for sure!

Interesting side point: It seems KRAS G12C is more associated with smokers and G12D with non-smokers. (I've never smoked.) My G12D was only a 4% allele frequency, which I'm guessing might be why the Guardant blood test didn't pick it up but the Tempus tissue test did. I'm not sure yet if that's as significant as my germline ATM mutation is to treatment options.

Yes, I did take paxlovid with my covid -- curious for many reasons why you ask... 🙂

It did seem to help speed up my recovery. It would have been incompatible with my chemo, and required a few days of clearance before I could get back to the infusions. I was worried it might make me ineligible for a trial I'm hoping to get into, but the trial directors said it was fine.

I will never have a disease caused by being vegan, that is for sure!

Interesting side point: It seems KRAS G12C is more associated with smokers and G12D with non-smokers. (I've never smoked.) My G12D was only a 4% allele frequency, which I'm guessing might be why the Guardant blood test didn't pick it up but the Tempus tissue test did. I'm not sure yet if that's as significant as my germline ATM mutation is to treatment options.

Yes, I did take paxlovid with my covid -- curious for many reasons why you ask... 🙂

It did seem to help speed up my recovery. It would have been incompatible with my chemo, and required a few days of clearance before I could get back to the infusions. I was worried it might make me ineligible for a trial I'm hoping to get into, but the trial directors said it was fine.

Hi mm,
I ask about paxlovid because you say it took 4 weeks before next treatment. I got covid in January and took paxlovid and was off chemo for the required 10 days even though I was well after about 5 days. However, I am currently on the 3:1 ratio of chemo (3 wks on and 1 wk off). I protested to come in after 5 days since at Hoag (I hadn’t made the change to chemo at UCLA yet) you have private rooms and I felt I wouldn’t be a threat to anyone else as far as covid being a contagious disease, but was denied. By my next treatment I was already accepted into the UCLA chemo. My long point is I know being off chemo especially since I’m at the very early stages of getting it and it hadn’t had time to build up in my body yet, that my cancer areas could grow. I thought maybe it took you 4 weeks because you were making a long recovery without paxlovid. I’m sure your numbers will go back down once you continue chemo.

I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every other Friday off) .

I started feeling sick (Covid) on my off Friday, tested positive the next day. Started the Paxlovid on Sunday, last dose on Thursday. They didn't think one day clearance was enough to avoid interaction with the chemo drugs, but were also going with the old/conservative 5-days-after-symptoms guideline before seeing me again.

I was actually happy to have the break, having gone 27 treatments in a row with no breaks or absences, since I had a short vacation scheduled the following weekend -- it left me with extra energy on the trip. Plus, re-synchronizing with my work schedule would have been a pain.

In hindsight, considering my first recurrence grew from nothing to 1.3 cm in less than 3 months without adjuvant chemo, it's no big surprise the original tumor and its metastatic children resumed growth so quickly after missing one treatment. I was hoping they could stay in their dormant state for that short of a period, but it was not to be. This thing is aggressive.

Now that I'm back on the full-strength chemo, we'll see if the tumors and CA19-9 respond as they did before, or if drug resistance is now in play. The scary part is that for the trial I'm hoping to get into, they require a 30-day washout period before beginning the new treatment, and we now know my cancer will take advantage of any break it can find. 🙁

If there's a bright side to it... it may be that I could possibly have been denied a chance to participate in the trial if my disease appeared stable on the GAC. These events may improve my chance of getting in. Fingers still crossed, and expecting more news next week.

Hello! My name is Dale, I was diagnosed with pancreatic cancer in December 2023. My cancer was found by accident, I had had my ovaries and fallopian tubes removed in early November, and that surgery irritated my pancreas and gave me pancreatitis. My doctor sent me to emerg to get a CT scan, and lo and behold a tumor was spotted in the head of my pancreas. I quickly got an MRI to confirm suspicion for carcinoma. Had become jaundiced so had an Endoscopy with biopsy and bile stent placement. Early indications were no metastases, tumor was 2.5 cm, no lymphadenopathy, so I was hoping it was caught early enough. My doctor referred me to Princess Margaret hospital in Toronto for treatment, they are a centre of excellence.
I got into an immunotherapy clinical trial, and had 2 infusions of durvalumab and oleclumab in January.
On February 9th I had pylori-preserving Whipple surgery. My recovery is going very well. However I just got the pathology report with what seems like really bad news - metastases was found in 3 out of 25 lymph nodes, and my cancer is adenosquamous carcinoma. Everything I read about adenosquamous is that it is very rare and prognosis is poor. Only thing holding me together is that there is very little data on adenosquamous since it is so rare.
I am starting Folfirinox in early April.
Anyone with experience with adenosquamous or thoughts in general on where I'm at I'd like to hear from you.
Thank you! Dale