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Thread: Folfirinox

  1. #1

    Folfirinox

    My husband has pancreatic cancer with spots on the liver. He had 12 treatments of Folfirinox; tumors on pancreas are not visible anymore (maybe still there in a small amonunt) and the spots on the liver are shrinking. His marker came from 970 to 20 (3under 35 is normal) the doctors suggest a drugfree period. But everything has been going in the good direction and because they don't know, this is their answer. We found on American sites people who went on with the treatments and got even beter resultults. Who can advise us: We think continuing treatments in this good position is a way to try......

    Anna

  2. #2
    Congrats on the good progress, Anna! I hope my hubby has same results - he's just done #2 of Folfirinox. I guess you are thinking: if they take him off, the cancer could return? Sometimes doctors want to give your system a break (because this stuff is so toxic). did they suggest a time when they would put him back? Or are they going to do another scan in a few weeks? It does sound like a bit of a gamble - which is unlike doctors - I 'll be watching what others have to say about this. Well done on the results thus far!
    October 21012: Husband age 50 diagnosed with Stage IV pan cancer with mets to liver. 12 treatments of Folfirinox. Chemo break June 2013 - March 2014. Back on Folfirinox for 4 treatments, then cancelled. CT Scan, ultrasound, biopsy only confirm cancer is back but no treatment recommended. Another scan in a week. Radiation:5 treatments in 4 days, stereodatic radiation (aka cyberknife) late July. No effect. September 2 weeks in hosp with blood infection. Oct: 6 chemo (Gem) No effect. November - at home, me at home full time. Slow decline til Nov 20 when admitted to palliative care. Body and mind ravaged by disease, toxins, my beautiful Carlos passed away on Thurs Nov.27 . May he rest in God's gentle hands in eternal comfort.

  3. #3
    That is such wonderful news!!!! I'm sooo happy for you I think protocols say to stop after 12 treatments but if the liver isn't clear yet I'd be asking to do more.
    Husband 51 yrs. old diagnosed May 11, 2012 StageIV PC, 7.3 cm tumour on tail of pancreas with mets to liver, lungs, caked omentum, malignant ascites.
    June 2012 started Folfirinox
    CT scan after 6 treatments shows cancer is stable with slight shrinkage to studding on abdominal wall.
    Going for 6 more treatments then another CT.
    October: oncologist says bloodwork is excellent, same as someone not having chemo!
    After 12 treatments the CT shows folfirinox no longer working.
    Cancer has grown and spread more in lymph nodes in chest.
    Started abraxane /gemcitibine December 6th.
    Bone scan on Jan 24th shows mets to bones.
    No more abraxane / gemcitibine treatments
    Meeting with radiation oncologist & primary oncologist Feb. 14th.
    Since January been having thoracentisis for fluid around the lungs in addition to the paracentisis for ascites.
    Went to Emergency Feb.12/13 due to numbness in legs. Started 1st of 5 radiation treatments for acute spinal cord compression. Also diagnosed with blood infection, iv antibiotics started and blood cultures done.
    No improvement from radiation treatments. Paralyzed from waist down.
    Blood cultures identify bacteria, antibiotic is correct according to infection specialist but after 10 days still septic.
    Doctors meet with us and state they have no other treatment available and hubby's health is too poor for a clinical trial
    Feb.24/13 come home from hospital
    March 7, 2013 @ 11:55 am passed away with his loving family at his side.

    "Forever In My Heart" - Derek Joseph Greene, 1961 - 2013



    "Never Give Up"

  4. #4
    No idea what to do about the stop or keep going decision but others here will definitely have a lot more wisdom for you I'm sure. Just wanted to say congrats on the excellent progress that your husband has made with folfirinox! I hope whatever happens that things continue in this direction for you!

    Prairie
    Spring 2012 Grandpa diagnosed, Stage III PC
    Summer 2012 Xeloda/Radiation
    Fall 2012 Scan, Tumour grown and mets to liver, Stage IV
    4.5 month break from treatment
    Winter 2012 Scan, mets appear to be small enough that they can't say for sure what they are
    3 weeks Gemcitabine
    Spring 2013 Scan, no shrinking but no growth or spread
    3 more weeks Gemcitabine
    ~ Made it to the one year milestone ~
    Late Spring 2013 Scan showed more liver mets, end to chemo.
    June 2013 He went to sleep.

  5. #5
    Experienced User
    Join Date
    Jul 2012
    Posts
    99
    My dad just took#11 last week. Because it has been hard on his neutraphils, they are going to do #12 in 3 weeks time, then a PET scan a week later! My hope is they keep on the 3 week folfirinox regimen without break because it will be easier on the body and also hopefully keep the cancer from getting the upper hand.

    I'll be looking forward to seeing what you end up doing.

  6. #6
    How did the folfirinox affect hair loss? My brother has just started the cocktail and is wondering about hair loss. Not really concerned if he does, just wondering if or when it will happen.

  7. #7
    As long as he can tolerate additional treatments, I wouldn't stop until everything is gone. Many are forced to take long breaks from treatment due to severe side-effects giving this aggressive type of cancer to spread. Also with activity still in his liver I would think your oncologist would want to eradicate those before stopping. Folfirinox has the ability to produce some remarkable results.

    Beginning in August 2011, my wife tolerated ten months/19 sessions/9.5 cycles of Folfirinox without a break and stopped all treatments almost 10 months ago when she had results from her first CT stating there was no new or progressive metastatic disease and no tumor recurrence back in June 2012. Each blood test and quarterly scan since then, by Gods mercy has been stable. The only medication she has taken post being initially NED is Metformin to treat type 2 diabetes. This drug in studies has also proven in some to kill pancreas stem cells not targeted by chemotherapy when used in conjunction with standard chemo options and also prevents tumors from recurring. She had been taking it since 2006.

    Stick with folfirinox for as long as needed. Hoping and praying for your husbands continued success in treatments.
    Last edited by hiyasofsj; 02-13-2013 at 08:32 PM.
    07/2011 - Annie age 57 dx w/inoperable stage 4 pc; 5cm tumor/body, two spots on liver 1cm each, CA19-9=21,000+
    08/2011 - folfirinox
    01/2012 - CT: liver healthy, tumor=4mm, CA19-9 normal
    06/2012 - comp 9.5cycles. Tumor=scar tissue.
    CT: NED (No evidence of new or progressive metastatic disease, No tumor recurrence.) Chemotherapy STOPPED. Only medications taken are EPIVIR for the liver and METFORMIN for type 2 diabetes.
    09/2012 - CT: NED
    12/2012 - CT: NED. Runs a 10 kilometer race.
    01/2013 - re-instated gym membership 2-hrs back to back daily training 5x weekly.
    05/2013 - CT: NED; 3-hrs back to back workouts at the gym
    08/2013 - CT: NED; 3-hrs circuit training 6x weekly

  8. #8
    So glad this is working for you hope I am as lucky (only done 3 so far)
    Diagnosed March 2012 non operable Pan Can with mets to liver and adrenal glands. Otherwise quite well. Started Gemzar in April did several rounds Then had scan in July showing no good results tumour imploding and mets had advanced. xeloda tablets were started with good results first scan came back with shrinkage every where not a lot but encouraging. Dec scan showed liver mets returned and gained in size Folfox started January 8 2013 Dr proposed 4 rounds then a scan. Completed 4 rounds scan results not so good pancreas tumour stable and 2 spots on liver also ok but small increase in size of 3 liver spot and more spots forming biloma a formed in liver. doctors describe me as asymptomatic. Currently on chemo break until further notice.

  9. #9
    Quote Originally Posted by concernedsister View Post
    How did the folfirinox affect hair loss? My brother has just started the cocktail and is wondering about hair loss. Not really concerned if he does, just wondering if or when it will happen.
    My wife began to lose some of her hair not all after about 4 months of folfirinox. After about 6 months of treatments her hair stopped falling and began to grow again. By the time she completed her 10th month of treatment, her hair was short but thick again, got a cool new haircut similar to Audrey Hepburn in the 1960's. She looks fabulous.
    07/2011 - Annie age 57 dx w/inoperable stage 4 pc; 5cm tumor/body, two spots on liver 1cm each, CA19-9=21,000+
    08/2011 - folfirinox
    01/2012 - CT: liver healthy, tumor=4mm, CA19-9 normal
    06/2012 - comp 9.5cycles. Tumor=scar tissue.
    CT: NED (No evidence of new or progressive metastatic disease, No tumor recurrence.) Chemotherapy STOPPED. Only medications taken are EPIVIR for the liver and METFORMIN for type 2 diabetes.
    09/2012 - CT: NED
    12/2012 - CT: NED. Runs a 10 kilometer race.
    01/2013 - re-instated gym membership 2-hrs back to back daily training 5x weekly.
    05/2013 - CT: NED; 3-hrs back to back workouts at the gym
    08/2013 - CT: NED; 3-hrs circuit training 6x weekly

  10. #10
    Experienced User
    Join Date
    Jul 2012
    Posts
    99
    My dad lost about 50% of his hair, give or take. And what is left is gray. He is 68 but he still had some brown hair before treatment.
    Here at home now waiting for call from dad. He is getting results of PET scan after folfirinox#12 last week. I can't sit still. My house is getting really clean!

 

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