Maintenance 5FU

[Jen]

Hello everyone,

  First time posting but have been looking through the discussions over the past few months.  Short story is my mother was diagnosed back in Oct 2021 with Stage 4 PC.  Parents live in the US and I actually live in NZ but have taken a 10mth leave from work and have come back to the States to help out with things while my mother and father navigate this time.  She actually has ampullary pancreaticobiliary type adenocarinoma.  Her scan showed a 4.6 x 3.7 mass which had infiltrated into her duodenum but none of the surrounding vasculature. She did however have positive nodes in 2 periaortic lymph nodes, a L supraclavicular node and a R mediastinal node (hence stage 4).  She had an internal/external drain placed for biliary obstruction as her liver function was starting to deteriorate and her bilirubin levels were grossly elevated.  She had basically been having painless jaundice with itching for nearly a month, but being the stoic person that my mother is she hadn't really gotten things checked out.  As a back story my uncle and his son were both in the ICU with covid during this time and my uncle subsequently passed away.  My Dad was also diagnosed with Rocky mountain spotted fever and the Alpha gal allergy during this month and so when Mom starting getting itchy they initially thought my mother might be having the same problems as my Dad.  

 

She is 83 but otherwise she is actually pretty healthy with no real comorbidities.  She did have papillary breast cancer 8 years ago which was treated with a R mastectomy and chemorad.  She had been completely in remission post this.  This pancreatic cancer is a new primary and not recurrence.  She takes no regular medications besides calcium and vitamin D.  Has always been really active with having 4 kids later in life and prior to the diagnosis was still push mowing her half acre yard and walking on average 5-8 miles a week.

 

She has had 8 rounds of Flofirinox thus far and on Wed the oncologist decided to change her regime to maintenance 5FU only (given that he wants to try and minimize any significant side effects vs quality of life).  We have been extremely lucky so far in that she has had minimal side effects from the chemo regime (gets some fatigue, has lost most of her hair again, and has had taste changes) but otherwise denies any neuropathy, has no pain, never been nauseated or vomited.  Gets more constipation then diarrhea.  Basically my mom is a machine and she just keeps on going.

 

She had a repeat scan post round 6 which showed an almost 50% decrease in her tumor with no signs of solid organ spread and the two lymph nodes in the periaortic region were now only 8mm and 6mm respectively.  They only did a CT abdo/pelvis and didn't relook at her chest so unsure what the other two nodes are doing.  Her blood work has all normalized during these 8 rounds of chemo and her CA 19-9 has gone from 89 initially to normal range.  I have a feeling if Mom was not 83 she would now potentially be a surgical candidate but we all realize how bad recovery from a Whipples can be.  The surgeon did say if we wanted to take that route he would need a biopsy from one of the lymph nodes to see if these showed signs of cancer, but again he doesn't really recommend her having this procedure and where these lymph nodes are are not easy access. 

 

I guess my questions for the group are 1. Has anyone had Nanoknife before with metastatic cancer.  Was this a relatively easy thing to recover from? What side effects occurred? I've been reading about it but I'd like to get first hand knowledge.  Our current surgeon isn't that keen on her having this.  However, there is a surgeon close to our town that is actually currently the head of a Stage 3 PC study looking into Nanoknife and its efficacy/safety, etc.  So obviously the University of Louisville has people very skilled at this procedure.  2.  Has anyone also been on maintenance 5FU after having 8 rounds of Flofirinox?  I know there is a recent study that came out not too long ago that showed this regime was basically as good as having 12 round flofirinox for disease free progression and overall survival.  3.  What side effects did people experience from long term 5FU and how many rounds did people get before their disease started to progress? Did they then get placed back on Flofirinox or did they commence Gem/CaP?   I will be having to go back to NZ in August to go back to work and just trying to be as realistic with things as I possibly can be.  I know everyone is different and we could be extremely lucky and Mom continues to be the way she is currently for a longtime or things could change drastically.  

 

I'm lucky in that I'm a recently qualified Anaesthetic doctor (actually had just passed my final specialist exam the day before I found out my Mom had PC) and my Dad is a retired GP (but he is 85) so navigating the medical field for my Mom I guess makes it easier, but Oncology or Hepatobilary surgery is still not my field of expertise and so there is a lot I don't know.  I've found this forum to be the easiest to navigate and have the best information on the web, hence why I've joined.  I just don't know how much I should maybe be pushing for a second opinion with regards to the Nanoknife (Mom's current surgeon is very experienced and a professor but he doesn't do Nanoknife so he obviously is biased.)   Or just continue to go with everything we are immediately offered and trust our current oncologist and surgeon that they are making decisions that are in the best interest of my Mother.  Sorry for the long winded post. Just wondering if anyone has similar past experiences or knowledge.  

[boa]

Hello Jen

I don't often come on to this website now and I hope that you get a response to your questions. I can't really answer them but Nanoknife has been discussed in the past. If you put that into the search engine on this page you will find some instances of use of it.

Boa