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Thread: Completed 12 Rounds of Folfirinox

  1. #1
    Regular User
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    Oct 2019
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    Completed 12 Rounds of Folfirinox

    My mom completed her 12th cycle of Folfirinox yesterday. The few final doses were only 2/3 of the modified Folfirinox, due to low platelets and neuropathy.

    We did ask for a maintenance chemo (such as Capecitabine pills) but the Doctor rejected the idea, saying that there is no data to support maintenance chemo. She also said that my mom had a very low platelets, and her body was basically screaming for the chemo to stop. So that was it--no more chemo until relapse (hopefully never).

    My mom, plausibly, is Lewis antigen negative, as she does not secrete CA 19-9. Upon diagnosis, her CA 19-9 was < 3; CEA was normal and CA 125 was in the 40s (borderline elevated). CA 125 was back in the single digit after the first few infusions of Folfirinox, and it has stayed there ever since.

    Quite a bit of a bummer since we cannot monitor the activity up to the biochemical level, but rather it has to happen through CT scan.

    So... now we feel like utterly motivated PhD students on the day they successfully defended their theses. "I have graduated, so now what?"

    What lies ahead is sometimes jittery and terrifying. And the scanxiety starts in 2 weeks... and every other 3 months after that.

    My poor mom, she has to endure all these things since February (now it's already November!). What a life.

    Initially I wanted to share my experience but then it quickly diverted into me complaining about our life

  2. #2
    Senior User
    Join Date
    Mar 2018
    Posts
    154
    I can't remember from your previous posts, but has she used gem/abraxane? What I've found with my own treatment was that the platinum chemos (oxalaplatin, cisplatin) were the harshest with platelets. If she starts to progress, gem/ abrx might be worth a try if her body has bounced back. God bless!
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose
    - Ca-19 up to over 6,000
    April '19 - Started 5-fu, Abraxane, Oxaliplatin
    Ca-19 down to 600, missing many doses due to
    low platelets
    Aug '19 - Started Irrinotecan, abraxane, cysplatin
    missing doses, low platelets
    Sept '19 - Ca-19 holding steady, ct scan shows 2 small
    lung nodules - 3mm, 5mm, blood clot in pulmonary
    vein, primary and liver mets stable started blood thinner
    Oct. '19 Switched back to POLF treatment - Paclitaxel,Oxaliplatin,
    Leucovorin, 5FU

  3. #3
    Congratulations on completing the chemo. In terms of a maintenance chemo, UPenn has broached having my wife enroll in a trial they are currently conducting:

    https://clinicaltrials.gov/ct2/show/NCT03404960

    Since your mom had a positive response to platinum therapy, she might be eligible for this (or similar) maintenance chemos.

    "utterly motivated PhD students on the day they successfully defended their theses."

    Did you mean motivated or UNmotivated ? My reaction after my defense was "Thank Gawd I am done and why in the heck did I EVER do this !"


    "
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-14-19 - Constipation with pain below the right rib cage. Again "Your old, take Miralax". I say BS and go to Urgent Care.
    7-15-19 - Urgent Care says "BS" on "Miralax" & orders abdominal CT scan.
    7-19-19 - Abd CT Scan reveals 6.0 x 4.9 cm mass in the pancreatic head which encases the superior mesenteric vein.
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced to 4.6 x 3.2 cm (50% reduction), but now evidence of malignancy in the lymph nodes.
    10-4-19 - Onc suggests gemcitabine nab-paclitaxel due to lymph node increase/high CA19-9 obtained at 1st & 2nd treatments. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

  4. #4
    Regular User
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    Oct 2019
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    16
    Wow, 12 rounds! What a trooper!

    My father is only on round 2, but feeling very fatigued.

    Try not to let anxiety get to you. My father may be Lewis Antigen negative also so I understand the stress of not being able to monitor results.

    I'm reading a book called Anti-cancer by Dr. David Servan-Schreiber who has been able to keep his brain cancer in check. Lots of good tips about keeping cancer at bay such as diet and lifestyle. Keep it the fight!
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  5. #5
    drj, what are some of the tips?
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  6. #6
    Regular User
    Join Date
    Oct 2019
    Posts
    11
    Jamie, she has not been on Gem/Abr (and crossing fingers she won't have to).

    RamblinWreck, thanks for the info re clinical trials. Thankfully my MS (with thesis) only took me 2 years! A friend of mine did 7 years for his PhD in Electrical Engineering, and probably he felt the same way like you did when he defended his thesis.

    drj, looking back, Mom also had fatigue. On some occasions, it was bearable, but there were times when she would not go out at all for the whole week. Nutrition is key, so as long as one can tolerate liquid food (protein shakes, Ensure, meal replacements, fruit juice, pasteurised egg whites), they should take them. In my Mom's case, she had diarrheas, especially when she drinks milk. Whipple made it worse, of course. So she had to eat regular, non-dairy foods, which rarely can be drunk as liquid, and contain considerably less nutrition than dairy, volume-wise. It got so bad during the 8th cycle, and she would often cry when I forced her to eat. I had no choice, and she was frustrated that she also had no choice but to stomach the food, which was very painful, due to the irritations from the GI tracts due to Folfirinox as well as the internal wounds and sutures of her Whipple. I like to work out and push myself for that One More Reps, and I always told my Mom, "Mom, One More Bite!"

    Aside, your Father has secreted CA 19-9, can he still be Lewis Negative? (Mom's CA 19-9 during diagnosis was written as < 3.)

  7. #7
    Regular User
    Join Date
    Oct 2019
    Posts
    16
    johndoe60, I'm not sure if he is Lewis negative or not. I've asked his oncologist staff and genetic counselors about this and they don't seem to be concerned about testing for it. His level has dropped from 65 at diagnosis at the beginning of October to 40 today after 2 rounds of chemo.

    jackieb501, the Anti-cancer was written I think around 2008. The author was an MD/PhD who was diagnosed at age 31 with a malignant brain tumor and was able to live with it for 20 years before passing. He describes how diet, lifestyle and the mind/body connection influence health, and backs it up with real research by doctors and scientists, but also acknowledges it may not work for all. He takes an integrative look and draws on both conventional and alternative approaches to explain what makes cancer cells thrive an strategies to inhibit its growth. The best analogy from the book that stuck with me was something like this...cancer is like a weed in your lawn and it's up to you to feed your "terrain" or soil properly to inhibit the "weeds" from spreading and taking over. Chemo/radiation/clinical trials/alternative medicines can help contain the "weeds", but won't kill them completely.
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  8. #8
    Thank you so much for your reply. Is your father making radical changes? (By the way, I ordered the book. Thanks so much).
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  9. #9
    Regular User
    Join Date
    Oct 2019
    Posts
    16
    jackieb501,

    My father isn't making necessarily "radical" changes, but he has made significant changes such as daily green smoothies loaded with Kale, making fresh vegetable juices, eliminating sugar and most processed foods, focusing on his passions and hobbies more, spending time with family, walking more, etc. Basically reconnecting with "life". Some days are good, some not so good, but optimism is key. To further expand on diet, we are taking an approach the focuses on getting quality calories from non-inflammatory foods. Oncologists, at least the staff we talk to, seems to focus on eating enough "quantity" of calories and tends to overlook "quality" of calories. We really are just trying to give him the best possible chance to beat this on all fronts, an integrated approach to treatment.

    Happy Thanksgiving to all!
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  10. #10
    We really are just trying to give him the best possible chance to beat this on all fronts, an integrated approach to treatment.

    BRAVO and well done !
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-14-19 - Constipation with pain below the right rib cage. Again "Your old, take Miralax". I say BS and go to Urgent Care.
    7-15-19 - Urgent Care says "BS" on "Miralax" & orders abdominal CT scan.
    7-19-19 - Abd CT Scan reveals 6.0 x 4.9 cm mass in the pancreatic head which encases the superior mesenteric vein.
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced to 4.6 x 3.2 cm (50% reduction), but now evidence of malignancy in the lymph nodes.
    10-4-19 - Onc suggests gemcitabine nab-paclitaxel due to lymph node increase/high CA19-9 obtained at 1st & 2nd treatments. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

 

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