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Posted

Hi everyone, I’m a newbie to this forum and am posting on behalf of my sister who was diagnosed with stage 2 pancreatic cancer at the end of January 2022. My sister is 58, lives in the USA and is in reasonably good health other than the tumour at the tail of her pancreas. She had a PET scan on 3rd March which showed it had not spread at the time and was measuring 4.6cm x 3.2cm which is a little larger than the original scan in Jan. Her genetic tests have come back showing no mutations that would account for the cancer.

 

Her original treatment plan was for 4 cycles of FOLFIRINOX followed by surgery and then more chemo. She had her first cycle of FOLFIRINOX on 23rd Feb, had a bad reaction to one of the drugs (possibly the oxaliplatin) for which she was treated with atropine but reacted to that as well. She was eventually able to have the entire FOFIRINOX treatment on that occasion.

 

Her second cycle on 9th March went badly wrong as she went into anaphylaxis within a minute or two or starting the oxaliplatin. She couldn’t talk or breathe as her tongue and throat had swollen, had to be given 2 epinephrine shots plus oxygen and other drugs (not sure what) and was taken to their equivalent of A&E by ambulance even though A&E was just across the road from the chemo ward. She was then given IV steroids which fortunately worked. Obviously she can’t continue with FOLFIRINOX and the alternatives she has been offered are gemcitabine plus paclitaxel or to see if there are any appropriate clinical trials in her area. I’m hoping to find out what treatments others have been offered once FOLFIRINOX is no longer an option. Any suggestions gratefully received, many thanks.

Posted

There are lots of positives about your sister’s situation as she is eligible for Whipple surgery. Although pre and post chemo was recommended, I was having bouts of pancreatitis which were sending me to the ER so  I couldn’t have pre chemo before the Whipple. 

 

I’m Canadian so the preferred chemo is the Modified Folfirinox which is 75% strength but has been researched to alleviate some of the toxicity but is as effective as Folfirinox. 

Posted

Hi Sandyvon, thank you so much for your message. My sister has been told that surgery is not an option at present although it's not clear why that is. In one of her appointments before treatment began, she was told that the tumour had not penetrated any of the major blood vessels so I'll encourage her to ask again about surgery. Thanks also for making me aware of modified FOLFIRINOX, I'd not heard of that. I looked it up but it still seems to use oxaliplatin (is that what your regimen is - the same 4 drugs as standard FOLFIRINOX but at a reduced level?) which my sister wouldn't beable to have (or likely any other platinum based drugs) as she'd have a worse anaphlactic reaction. 

 

All the very best with your treatment, I hope it is successful for you. 

Posted

Yes. Modified Folfirinox is the same four drugs but at a reduced level. Gemcitabine and cisplatin is the other combination which has been mentioned for pancreatic cancer. 
 

 My understanding is the preferred treatment is to do chemo before surgery so random cells aren’t spread during surgery. Chemo is done after surgery to clean up any random cells.  It sounds as if that is the plan for your sister. 
 

Not having chemo before surgery could have resulted in a small tumour in my liver three months after my Whipple. 
 

Thank you for your good wishes. I’m very fortunate as my medical oncologist recommended Next Generation Sequencing (NGS). A genetic mutation was discovered and I’m now on a targeted drug for the last six months which appears to be working. 
 

From my point of view, being eligible for the Whippple surgery is a game changer for pancreatic cancer. Best wishes for your sister. 

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