Recently Diagnosed Due to Jaundice

[Jena]

Hi All,

 

In the US - haven't found a forum quite like this one so would like to post a bit?

 

Diagnosed about two months ago - 64 yo female - had just had an unrelated surgery, and was slowly recovering, but not feeling well.  My professional caregiver and my family noted I looked jaundiced.  Two days later had an ERCP, then a plastic stent the next day, then a week later an EUS, including an uncovered self expanding metal stent (SEMS), and biopsy confirming 2 cm cancer on the head of the pancreas, that was constricting the bile duct.  Met with a local surgeon with credentials in Whipple surgeries (only open variety) - he felt neoadjuvant chemotherapy was appropriate, so I met two days later with an oncologist to evaluate options.

 

In the background I had received advice from surgeon friends who felt, given this was very early and the cancer small, that I should try to get into Mayo Clinic Rochester, Minnesota ASAP.  Three days later I was there - a large number of tests were conducted to stage me, including large number of blood tests, CT, PET/MR, and finally a laparoscopic investigation by the surgeon - the presence of the cancer was confirmed by the blood tests, CT, PET/MR and the visual observation of the surgeon.  The surgeon directed neoadjuvant treatment:  four two-week cycles of FOLFIRINOX, followed by assessment, then four more two-week cycles of FOLFIRNOX followed by assessment, then 3-5 weeks of radiation therapy, followed by laparoscopic surgery.  A long road I am not looking forward to walking.

 

While the cancer is certainly there, three tests seem to indicate a lack of spread - but, this is simply my read of the reports at this point - I don't know enough about it - this was at the end of last week.  The tests and results are:

1.  CEA, Peritoneal Fluid = <0.7 ng/mL

2.  CA-19-9, Peritoneal Fluid = < 5 U/mL

3.  Cytology = (thin prep) Negative for malignancy

 

These tests seem to indicate some probability of a lack of spread - is this a correct read?

 

[Jena]

Also just saw a new summary of a test called cfDNA KRAS 12, 13, 61, 146 that noted a "negative" result.

[Sandyvon]

From my perspective, you’re receiving exemplary care for your pancreatic cancer which has appears to be caught early. 
 

Is the laparoscopic surgery being used to remove the tumour rather than Whipple surgery? 
 

Good luck and please keep on posting! 

[Linz]

Hi Jena, I'd echo what Sandyvon said, it sounds like you've had excellent care so far. A PET scan is one of the best ways of determining whether cancer has spread as the substance injected before the scan (which is labelled glucose, a type of sugar) shows any areas of the body that are using unusually high amounts of glucose. One of the reasons that tumours are able to grow quickly because they use lots of glucose and therefore show up on a PET scan. Your CA-19-9 result is amazing, to give you perspective, my sister was diagnosed with pancreatic cancer at the end of Jan 2022 and her CA-19-9 level then was 26,000.

 

KRAS is a gene and it is very common to find that people with pancreatic cancer have mutations in the KRAS gene. Your negative result indicates that you do not have any of the KRAS mutations that you have been tested for. Hope that helps and all the best with your treatment. Despite it being a horrible condition, it sounds like yours has been caught very early which is good news.

[Jena]

Sandyvon, yes, I think the care is great.  The surgeon does almost all his Whipple (same end result) laparoscopically.

 

Linz - sorry, I had both a serum/blood CA-19-9 and a peritoneal wash CA-19-9.  The peritoneal test was the one that was <5 U/mL.  The serum/blood CA 19-9 was 265 U/mL (high but not astronomical).

 

I'm hanging in there, preparing for the start of chemotherapy next week - trying to eat as much as possible (pretty skinny right now) to get ready.

[Sandyvon]

As per Linz, I recommend Next Generation Sequencing (NGS) to rule out if there is a genetic mutation which caused the cancer. I have a rarer type of pancreatic cancer, and I’m currently on a targeted drug which appears to be effective for my Neurotrophic Tyrosine Receptor Kinase (NTRK) gene fusion driven cancer. 
 

Even though I recovered very well from traditional Whipple surgery, it would be very wonderful to have had it through laparoscopic surgery. 
 

Best wishes! 

[Jena]

Chemo starts Tuesday, and although I know it’s going to be unpleasant, I’m glad it’s starting now. Does anyone have any suggestions/tips as this begins. When do the side effects begin?  I’m trying to prepare myself mentally and physically. 

[Sandyvon]

I didn’t have a lot of side effects. My experience was the steroids that I was given were very effective until they were discontinued at the same time the Infusor was taken off.

 

I then crashed the next day and then everyday after that time, I became stronger. By Day 7, I had returned to normal. I did have some diarrhea. The chemotherapy affected my metabolism so I also lost weight but was able to regain it the next week by eating four meals a day. 
 

Good luck and best wishes! 

[Jena]

Starting on day 3. Pump being disconnected this afternoon. So far I’ve just been extremely tired and sleeping a lot. 

[Expat]

Hi Jena, I hope you chemo sessions went well. Was stage was your cancer? The laparoscopy surgery was done because cancer was at early stage or is it done for any stage? My daughter will start chemo next week but we are also exploring the option to search for treatment in the US. Can you refer your dr in the Mayo Clinic? Thanks a lot!

[Rowena]

Jenna, you were asking about side effects of FOLFIRNOX. One that I found was extreme sensitivity to hot and cold in my hands and feet. I used compression gloves and ankle compression supports then put cotton gloves over the fingerless compression gloves do that I could hold things like glasses containing cold water. I also found that water flavoured with squash helped where my sense of taste was distorted. Hope your journey is going well xx