Tumour on pancreas 6cm, tumour markers 120,000: Need advice

Your experience is so different from mine here in Virginia! I had a diagnosis within 24 hours of walking into an ED, and a surgeon in my room drawing Whipple plans all over a whiteboard that day! Surgery was first, then 5FU (12 rounds), then a chemo break before Abraxane/Gemzar (14 rounds), now on break again. C19-9 down to 37 from 496. I have gained some weight, exercise every day, sleep great, and will be ready to see what the oncologist says in about a week. The surgeon weighs in again next month! It was stage 4 with pancreas and 16 lymph nodes positive for cancer. I credit the fast moves that were made for me. I am 76+ and hanging in there for two years now, so keep moving forward!

Nancyjane1 that’s such good news that you are doing so well especially with the generous lymph node involvement. You are lucky and two years gives me hope. Could you please share what facility you were treated at and what your tumor mutations are?

Welcome shelleyderish,
I’m not familiar with facilities in Canada, and I wouldn’t want to slow down your progress of getting your husband’s liver biopsy this Friday, but sounds like you definitely need to find a center of excellence for pancreatic cancer. What is the overall physical condition of your husband, is he well enough to travel? Pancan.org is where you might want to start in order to find a pancreatic anger group/hospital to evaluate/treat your husband. I’m also stageiv with Mets to my liver, hepatic artery, and celiac artery though I was initially diagnosed at stage2 and was cancer free for 4.5 months. A lot of progress depends on the genetics of the tumor, individual internal physical co dictions, and age of the patient on how well your body responds to treatment, but there is always help. You will probably get more responses in this thread that can give you more specific information regarding your options.

I should have proofread my comment, but I meant a CENTER of excellence for pancreatic cancer. I go to UCLA as I live in Southern California. I also have Mets in the abdominal peritoneum.

My husband was diagnosed with mass on pancreas 1-1/2 yrs ago. We were told to leave it and would monitor via mri ever 6 months Well here we are today! In past 6 months we are told never have seen your grow so fast. It’s 6CM It’s on spleen liver and they say probably many more places as tumour markers are so high.. has anyone experienced tumour markers 120,000?
Had EUS 2 weeks ago .biopsy came back unusable …. Sent for a liver biopsy yesterday with ultrasound they can see large areas that should be able to get biopsy from but they could not proceed
As we received wrong instruction about being off blood thinners we were instructed 48 hr and they want 5 days. Again they were sorry for the misinformation. Rebook for Tuesday
We contacted a HPB surgery clinic in Vancouver They Triaged his case and called yesterday that surgery was not an option as it has spread to so many places.
We have an appointment at the cancer clinic Thursday but no biopsy yet. We Seem to be going in circles He is still feeling fine . I Have bee doing research on treatments to prolong life to ask questions at that meeting
Is there any proactive suggestions on next steps ? Anyone has sucess with Keytruda .. CHRISPR or Parp inhibitor

@shelleyderish
So sorry to hear all of this.
Once the cancer has left the pancreas surgery is not an immediate option. The disease is now in the bloodstream so surgery is not the immediate cure. However, folfurinox has great success in shrinking those numbers, shrinking the tumors, and often times rendering tumors necrotic. You should get to a pancreas center of excellence as soon as possible

When you do, they will be proactive in understanding his gene mutations and other things that will help to direct treatment. may God bless you with wisdom and angels in your path.

I have mentored a patient with a starting CA19.9 value of 818,000 that peaked at 1,200,000 during the first few cycles of (m)Folfirinox and then dropped to 200,000 as treatment progressed. There are two other first-line chemotherapies of Nalirifox being the latest FDA approved drug which is better than Gemzar/Abraxane (Gemcitabine nab-Paclitaxel. Nalirifox was slightly better in progression-free survival up to 25 months in comparison to (m)Folfirinox. At that point, overall survival was the same. An abstract on comparison of Nalirifox to (m)Folfirinox was just presented at the ASCO meeting in Chicago two weeks ago. The title of the abstract is “Comparative Effectiveness of NALIRIFOX vs. FOLFIRINOX in pancreatic cancer” by Xiayu Jiao of the Department of Pharmaceutical and Health Economics, USC Schaeffer Center, Los Angeles, CA and Afsaneh Barzi, City of Hope Comprehensive Cancer Center, Duarte, CA.

There are targeted therapies that are successful, however molecular profiling of the tumor needs to be performed to determine if specific mutations and actionable biomarkers are present. I have the germline form of the BRCA2 mutation and the PARP inhibitor Rucaparib has been extremely successful for me. I am the longest former pancreatic cancer patient that was diagnosed with metastatic disease taking this drug at 9 3/4 years. I achieved No Evidence of Disease and have since been declared cured. To get to the point of NED required very aggressive chemotherapy using full dose Folfirinox. I was on the original FDA approved formulation used from 2011-2018. I received treatment every 15 days for 24 months without pause. I had a total of 46 cycles of chemo with 24 cycles being Folfirinox and 22 of 5-FU/Leucovorin. Dosing was in alternating groups of six. This is used for PDAC and PACC forms of the disease and not for PNET tumors. You need to find out which cell type has been diagnosed as PNET tumors are treated with different regimens.

Keytruda requires a patient to have the somatic KRAS G12C mutation which occurs at a very low frequency in pancreatic cancer patients of 1-3%. It also requires the patient have the actionable biomarker of PD-1. These markers require molecular profiling of the tumor.

CRISPR/Cas9 is currently a research tool and only pancreatic cell lines have been looked at for gene editing. It has not been used in clinical trials and not developed enough for human trials at this point in time.

QUESTIONS TO ASK

https://pancan.org/facing-pancreatic-cancer/diagnosis/choosing-your-healthcare-team/questions-to-ask-your-healthcare-team/
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https://pancreaticcanceraction.org/about-pancreatic-cancer/pancreatic-cancer-diagnosis/what-questions-should-i-ask-my-doctors/ .

https://www.cancer.org/cancer/types/pancreatic-cancer/detection-diagnosis-staging/talking-with-doctor.html .

https://youtu.be/x5DPdI827to?si=X386oIG9Rx4m2odb
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https://pathology.jhu.edu/pancreas/questions-to-ask
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With late stage disease, one should consider clinical trials sooner than later These offer patients to potential for a better outcome over standard of care protocols by providing the latest drugs and treatments before availability to the general patient population. All cancer drugs began as clinical trials and those in trials where the drug is successful are already ahead in deriving benefit. Clinical trials have eligibility criteria where the prospective participant needs to be in better physical condition and meet the requirements of hematology and blood chemistry parameters. This is why clinical trials should not be looked at as a last resort. Deterioration of a patients health can lead to not being accepted into a trial.

Thank you. We have a meeting with oncology Thursday can you explain what a pancreas center of excellent is ??

Thank you. This is ver helpful information. I know they have clinical trials connected to the cancer clinic we are going to this week Right now he is feeling good. Just hope this biopsy turns out this week as without it we keep going in circles I’m sure to be in clinical trial they need a biopsy
HPB clinic ordered CT also as they feel In his lungs also
It’s just frustrating /discouraging navigating our medical system

Wow that’s great! They really do need to move fast because I’m told PC is very aggressive. Best wishes!