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Thread: Folfirinox did not work

  1. #1
    Senior User angelamylove's Avatar
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    Folfirinox did not work

    Hello everyone: When to go see the oncologist this morning about getting results from the latest CT Scan that was done in late December. It was not good news. More cancer showed up in her liver and some of the existing tumours increased in size. Did not go over very well when my wife heard the doctor telling. The doctor could only do so much to console after the news came out and I myself wanted to cry with her, but had to stay strong and be her shoulder to cry on. We are now going to start another regime with another chemo, it starts with a G, my mind is playing tricks on me while I type this. It will be 3 weeks in a row once a week and hen a week off then again and then again. Then another CT Scan and see where everything stands. It is a worse waiting game now because all you think about now is that is this chemo going to work better than the other.

    We hope and pray that this will be controlled after this chemo or we try something else if my wife wants to.

    Sorry for the bad news, just had to get it out of me.

    Thanks

    Peter

  2. #2
    Senior User angelamylove's Avatar
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    Folfirinox did not work

    Hello everyone: When to go see the oncologist this morning about getting results from the latest CT Scan that was done in late December. It was not good news. More cancer showed up in her liver and some of the existing tumours increased in size. Did not go over very well when my wife heard the doctor telling. The doctor could only do so much to console after the news came out and I myself wanted to cry with her, but had to stay strong and be her shoulder to cry on. We are now going to start another regime with another chemo, it starts with a G, my mind is playing tricks on me while I type this. It will be 3 weeks in a row once a week and hen a week off then again and then again. Then another CT Scan and see where everything stands. It is a worse waiting game now because all you think about now is that is this chemo going to work better than the other.

    We hope and pray that this will be controlled after this chemo or we try something else if my wife wants to.

    Sorry for the bad news, just had to get it out of me.

    Thanks

    Peter

  3. #3
    Top User Queensville's Avatar
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    Hi Peter, I'm so sorry to hear this news. Would it be Gemcitabine that she is starting? It's important to get this info you can make an informed choice. Call the doctors office and ask now before it starts because in ontario we only get three types of treatment that OHIP will pay for and if it is something that you are not in agreement with then you will have time to consider other options. Also have a look at the clinical trial thread. My hubby took Abraxane and that is a good option.

    I think it may still be in the trial phase but it's worth a shot.

    One of the things that helped us with decision making was to research the chemo that was being offered and what the prognosis was while on it.

    Queensville
    July 22 2011 Hubby (64) Diagnosed PanCan. Sept2011- Feb 2012: Abraxane/Gemcitabine. Feb-May 2012:Gemcitabine only. June-Sept 2012 5FU. Sept 4-no more chemo - Just living life. Multiple stents. Jan 2013/18 month mark. Mets everywhere. Looking for a bumper sticker that says 'Stay at safe distance - Driver suffering caregiver burnout'. Hospice Thurs Feb 28 2013. March 12 2013 he went off to his new adventure where we will one day meet again. It was 20 months from date of diagnosis until now.

  4. #4
    Senior User Martha56's Avatar
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    Hi Peter. I'm so sorry to hear that the Folfirinox has stopped working. I know how you feel because the same thing happened with my Husband. He is now on a chemo combination of Gemcitibine with Abraxane. It is the same schedule as your wife's new chemo. Three weeks in a row then a week off. My husband will have his 4th treatment tomorrow. It sounds like your wife may only be getting the Gemcitibine. We have the Abraxane approved for my Husband through a compassionate care program. If you want to try this chemo you could ask your oncologist about it. We live in Ontario also so you should be able to access this program if your doctor thinks it is suitable for your wife. There is a "sticky" at the top of the page regarding this type of chemo combination. I know the bad news knocked the wind out of us for awhile but try to regroup and get your strength up for the next chemo....there is still hope!! My prayers are with you both.
    Martha
    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"

  5. #5
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    Dear Peter, I am sorry that the Folfirinox didn't work well for her. It worked for my husband for a while. He is now on the Gemzar (Gemcitibine). He gets scanned on the 7th so see if it is doing any good. Different chemos work for different people, so maybe this will be the right one for your wife. It is supposed to have fewer side effects. Sending you good wishes and prayers.
    Lise
    "May you be held in compassion; May your pain and suffering be eased; May you be at Peace"

  6. #6
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    Well, we are all here to listen, Peter.
    Maybe the new drug is Gemzar? That's what my husband is on...same schedule that they have outlined for your wife. We have 2 more weeks, then a week off, then the CT scan. And, like you, we will be hoping for some good news...
    Your wife is lucky to have you there to support her and be strong for her. I sometimes wonder how people who do not have partners manage to get through something like this.
    Wishing you both better luck with the new chemo,
    Dori
    Nov 12, 2012 - husband diagnosed with pancreatic cancer. Sky fell. (Well, it felt like it did.)
    Nov 13, 2012 - canceled trips to Europe, New Orleans, and an 80 day cruise.
    Nov 29, 2012 - began chemo with Gemzar
    January 7, 2013 - ended chemo, began hospice
    March 17, 2013 - lost my best friend

  7. #7
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    Peter I'm so sorry to hear about your wife. Unfortunately, most pancan stage IV patients will receive this horrible news at one point (some sooner than others).

    I try to think of it the way my mother's doctor explained it last month. His outlook was that its not about the length of time that someone lives with pancan, but their quality of life. It is so difficult and I battle with it daily, but I also have to be realistic about the prognosis. As long as chemo is helping manage my mother's pain, then its ok in my book regardless of the progression of the tumors. Ultimately, I think that's the best you can ask for in this awful position that we are in

    If your wife is going on Gemcitibine, ask about pairing it with Abraxane. Clinical trials show that combination to have a statistically better result than Gemcitibine alone.

  8. #8
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    Hello Peter. My Dad is going through the same thing right now. I took him for a CT scan on New Year's Eve. We had a PET scan done before, which led to the CT. We spoke with the Doc, and it sounds like we are switching to Gemcitabine also. My thoughts and prayers are with you and your wife. This is such a challenging time, all you want is some sort of good news to keep the hope alive. My dad has not received a lick of good news since diagnosis. He broke down to me yesterday and said "I'm going to beat this." He's exhausted from the folfirinox and everything is a challenge. Here's to hoping that the Gemcitabine does wonders for our loved ones!

  9. #9

    Us Too..

    We had this same oncologist visit in August, Peter. I know how hard it is. Like you, we were strong for Mom who actually handled the news remarkably well, but I wanted to hug her and cry. I was just thankful we were not out of options. I am so, so sorry Peter. I will be praying the Gemzar is very effective at knocking the cancer back down. We just have to live one day at a time with our loved one who is sick, remember to breathe, and pray! Blessings to you and your family!!!

  10. #10
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    I would go all out to combine with abraxine. My dad had gemcetabine alone it did nothing. They are trialing various things with gemcetabine to make it more effective. Good luck, it's good you have other options, try stay positive...

  11. #11
    Senior User laurah01's Avatar
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    Peter, I am sorry to hear this news. Is the chemo you refer to Gemzar (Gemcitibine?) I hope you know we here on this forum are your collective shoulder when you need one. I know how hard it is to stay strong and anytime you need to vent, you have a place to go where we all understand exactly what you are going through. You are in my thoughts & prayers.

    Laura
    Dad diagnosed with Stage IV PC with mets to liver March 4, 2011 ~ Died 11 months later, February 4, 2012.

  12. #12
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    Allow a day or so for grieving. Then get a Plan B asap. No time to waste with Pan can.

    We were on a new regimen with new Onco only 5 days after finding out regimen #1 no longer working. now we are happy again. New chemo working.
    "Love the humor. Hate the tumor."


  13. #13
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    Gem gave us 6 good months! no side effects.
    "Love the humor. Hate the tumor."


  14. #14
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    Hi Peter so sorry for your setback will be thinking of you both.

  15. #15
    Top User Carol Wal's Avatar
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    Peter, I am so very sorry for this news about your wife she is one lucky lady to have you but please remember to take care of yourself......I know this is hard I too feel I must be strong for my husband and not break down......( at least in front of him ) Such a game we play.... I'll add your wife to my prayer list ....
    Oct 9,2012 Hubby's ( 65 ) ERCP, Stent put in also told might be cancer
    Oct 23,2012 ( ERCP ) diagnosed. PC on head of pancreas.
    Nov. 5,2012 Whipple at Loma Linda Hosp.... could not be finished due to heart issues
    ( 4 1/2 hours into surgery )told it's also attached to Portal Vein, now only Chemo & Radiation
    11-27-12 Surgery site Infection
    Waiting for Chemo/Radiation
    1-6-13...Still waiting
    1-18-13 appt with Radiologist on 22nd.
    1-30-13 Hubby started on his radiation and Pill Chemo ( Xeloda 3200 mg per day ) for six weeks
    3-12-13 ( Bowel blockage) in Hospital Fluid being drained
    3-21-13 Last day of Chemo/radiation...Now on a much needed break
    4-18-13 New Stent put in metal with mesh
    4-19-13 2nd round of ( Xeloda ) 2 weeks on 1 week off till ? 4000 mg per day for 6 months ( changed to 3000 )
    6-12-13 Large Hernia at surgery site/won't be repaired due to his heart condition also losing toenails ( Xeloda )
    8-9-13 Taken off all Chemo just Living Life now and Keeping him Pain Free "In God's Hands"
    REMISSION NOW PRAYING IT WILL LAST 1-10-14

  16. #16
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    Agree with Queensville....gemcitabine is most effective with abraxane. See sticky post on top of this forum.

  17. #17
    Senior User hiyasofsj's Avatar
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    Peter! Really bummed to hear about the setback in treatment. Stay positive and I am hoping and praying this new line of treatment will fair better than folfirinox. Stay STRONG!
    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

  18. #18
    Super Moderator Top User DebbieC's Avatar
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    Peter,

    So sorry to hear those results. One thing to be thankful for is that there still is a plan B! My dad had Gemcitabine his first go around before the whipple and it was very effective for him and the side effects were minimal. Even though Folfirinox usually has excellent results, just remember that Gemcitabine has always been the go to drug for PC so it can also show good results.

    Lisa Renee is right...let it sink in and once you get the plan in motion you will once again feel like you are moving in the right direction. Wishing your wife the best.

    Debbie
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  19. #19
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    Quote Originally Posted by angelamylove View Post
    Hello everyone: When to go see the oncologist this morning about getting results from the latest CT Scan that was done in late December. It was not good news. More cancer showed up in her liver and some of the existing tumours increased in size. Did not go over very well when my wife heard the doctor telling. The doctor could only do so much to console after the news came out and I myself wanted to cry with her, but had to stay strong and be her shoulder to cry on. We are now going to start another regime with another chemo, it starts with a G, my mind is playing tricks on me while I type this. It will be 3 weeks in a row once a week and hen a week off then again and then again. Then another CT Scan and see where everything stands. It is a worse waiting game now because all you think about now is that is this chemo going to work better than the other.

    We hope and pray that this will be controlled after this chemo or we try something else if my wife wants to.

    Sorry for the bad news, just had to get it out of me.

    Thanks

    Peter
    Don't lose faith . My wife is Stage IV, and she also went on folfirnox and the results were not good after the first CT scan, there was further growth. But she went on Abraxane + Gemzar, and then just Gemzar (she needed a break from the Abraxane, side effects a little rough), and guess what, her tumors shrank (both in liver and pancreas). We are of course humble and recognize things can always change, but so far so good. So folfirnox might work well for many, but I think it really depends on the person, and our Doc doesn't agree that it's the "Gold Standard." You can still get good results from other regimens.

  20. #20
    Senior User angelamylove's Avatar
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    The chemo is Gemcitabine that she is getting. The mix of Abrazane was never mentioned and we really were to shocked to ask another questions. You can tell the if bad or good news by the look of the oncologist comes in for the appointment. That will be a question to ask next week before her appt. before chemo appt. thanks for everyone's thoughts and sayings and support. I do think of myself first but will always put the thoughts of my wife and kids first.

    Thanks

    Peter

 
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