1st Chemo - Folfirinox
Mom has pancreatic cancer stage 4 with mets to liver.
Diagnosed end of November 2016. Got her first chemo 20th of December 2016. Folfirinox.
My god what a beast! she was whipped out after they took the box of after the 3rd day. She couldnt keep anything in! Had to stay in the hospital for 4 days ( moms is a tough patient, a know it all and a bit and fisty, not an easy one to treat. )
So had her break, is suppose to go back this thursday, but is still feeling a lot of stomach pains, vomiting, now constipation cause of the pain meds and what not. And has a bladder infection on top of all! She just isnt strong enough yet for a second round. Her oncologist said they will lower intensity of the treatment. But im still worried!
Oncologist is kind of negative " nobody really survives this ". We still decided to have her on some additional supplements, and no sugars, and are looking for alternative treatments like hyperthermia next to the Chemo.
But i'm am TERRIFIED of the chemo. Her hair has started falling out already after the first round. She lost a lot of weight about 6 kg in a month. Is constantly struggling with her stomach or colon area.
I wanted to write so much more, but i honestly forgot what else to add.
Welcome to the forum and very sorry to hear your mother's diagnosis.
A stage 4 diagnosis is never good news, but several of us here have outlived our oncologists "first guess" - and even their second guess. As far as his comment that "nobody really survives this", that could be said about life in general.
Folfirinox hits some of us pretty hard, especially the first few treatments - others seem to tolerate it pretty well. My first treatment hit me pretty hard, but adjustment to the anti-nausea meds gradually got things under pretty good control. In addition to the IV meds given during treatment, Emend really helped. Eventually I was able to tolerate treatments using Emend on the first day of infusion and Marinol from the first through the third day. A big advantage of Marinol for me was that it doesn't have constipation as a side effect. One thing I learned quickly is that minimizing nausea and preventing vomiting is much better than trying to solve it after it starts.
Someone who is losing weight needs calories. Avoiding sugar during chemo is a theory that has never been proven as far as I know, although there is some tissue culture work supporting it (which frequently doesn't hold up with living organisms. Unfortunately, fats are the most caloric thing you can eat but many of us with pancreatic cancer have difficulty digesting fats.
This site is devoted to science based medicine. We allow discussion of complementary treatments, but not alternative treatments - there are MANY sites on the web that promote those, but offer only anecdotes about their "cures". Complementary treatments are those that are done in conjunction with medically proven treatment and with the approval of the patients oncologist. Alternative treatments are those that are used instead of proven treatments.
It is difficult to know how much of the trouble your mother is having is due to advanced disease and how much is due to chemo. The loss of 6 Kg in a month is significant, especially since she has only had one chemo treatment.
You mention that you are terrified of chemo. Please try not to show your feelings about chemo to your mother. If she sees you terrified, it may just magnify her own fears. There are so many things to talk about.
My best wishes to you both. It is not easy, but hopefully her side effects will lessen, especially with reduced dosage, and she will respond well to treatment. Please let us know.
7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
12/12 Whipple - R0 margins, 2/29 nodes pos.
1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
2/13 - 8/13 Gemzar for 6 months
Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
3/15 - spot larger - probable met - surgery planned
4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
10/15 - 8/16 maintenance 5-fu every other week
8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
9/16 - lung biopsy confirms pan can met,
10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
Still open to immuno-oncology trials (vaccines or checkpoint inhibitors) if I find one I'm eligible for.
Stay busy and live life to the best of your ability.
Most long-term pancreatic cancer survivors were borderline obese when diagnosed. This is a disease (like many GI diseases) where extreme weight loss can halt all treatments. When a person is struggling to maintain weight, restricting their caloric intake can make weight maintenance impossible.
Bob is right that the first round(s) are often the worst as we learn how to deal with the side effects. Perhaps you can get them to lower the dosage next time. I'm not sure why they don't start everyone with a reduced dose while they learn how to cope and then up the dose if they can handle it?
This site only discusses scientifically-based treatments. There are other sites that will discuss alternative treatments.
Dec 2010 - back/abd pain
May 2011 - Unresectable stage III, 2.5cm tumor
Jun-Aug 2011 - Gem/Cis, 9 rounds
Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
Oct 2011-Sep 2012 - shrinking tumor
Feb 2012 - National Familial Pancreatic Study
Aug 2012 - Downgraded to stage IIA, PGP
Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
Dec 2012 - Quebec PanCan Study
Sep 2012-Dec 2016 - NED
Mar 2013-present - NCT01088789
Thanks for the response! Im doing my best not to show emotions. She eats a bit sugars, not as extreme, its just she was never a sweet tooth, so she doesnt eat any chocolates etc. She does have her nutricia shakes. Which sometimes she cant really hold in either. Will call her doctor today and discuss the way forward.
Yes, they mentioned will lower the dose, ill try to find out how much.
I was thinking the same thing. Isnt a build up a bit better?
My father had a lot of the same symptoms so I know how you feel and the symptoms were especially worse straight after eating so he was constantly hisitant to eat anything. He was put on Anti-Sickness medication which he takes 30 minutes before he eats and also Creon which he takes while eating. The idea being that it would open up his digestion system to let the food\fluid though.
Originally Posted by WonderWoman1
Since he has been put on this medication combo the more severe of the side effects have gone. He's now left with pins and needles in his fingers, fatigue and bad taste however he can cope with these.
He's now on his 8th cycle with 4 more to go. The symptons do get worse but if you can get the issues with digestion under control the rest is manageable.
Originally Posted by doherty
Thank you! She she needed a stent in her duodenal stent. she got that yesterday so hopefully n the next 72 hrs she will get less side effects from anything else. My mom always feels her doctors arent giving her the best, might be the mentality (We are in holland) so u get things when ish hit the fans we constantly have to prevent this or go for the extreme. i hope with the stent she has a bit of an easier process with eating n drinking, but now she fees like they havent inserted the right stent, which i feel is cause of the lack of her oncologist empathy. " okay, lets hope the stent goes right" and then u wont hear from her for 3 days. my moms is very sensitive for that type of energy.