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Thread: Successes with FOLFIRINOX?

  1. #11
    Dave:

    Thanks for the link to your video !

    It was a MOST excellent video. Right after your video, there was a video for Dr. Mark Truty at the Mayo Clinic. His video, dated 2012 was about his surgical techniques for patients with advanced pancreatic cancer. Back then he was having great success with chemo, surgery, and then chemo. His success rate has only increased since then.

    Yes, there are limits to what he can do, but he definitely offers hope !

    https://newsnetwork.mayoclinic.org/d...ncer-patients/

  2. #12
    You can download the paper that Dr. Truty wrote at this link:

    https://insights.ovid.com/pubmed?pmid=30946090

  3. #13
    Update. We have completed the four rounds of chemo, and there was a significant reduction in the tumor. However, there was also evidence of spreading to the lymph nodes.

    We meet with the oncologist tomorrow to get the recommendation for the next steps. Any and all words of wisdom will be appreciated.

    The chronological events details is as follows:

    57 year old Wife's PC:

    April 2019 - Constipation. Defecography ordered and came back negative. "Your old, take Miralax".
    Info on Defecography ==> https://motilitysociety.org/wp-conte...-8-15-2005.pdf
    July 14 2019 - Constipation returns but this time accompanied by pain below the right rib cage. Gastro again says "Your old, take Miralax". I say BS and go to Urgent Care.
    July 15, 2019 - Urgent Care says "BS" to the Miralax comment and orders abdominal CT scan.
    July 19, 2019 - Abdominal CT Scan reveals 6.0 x 4.9 cm mass located in the pancreatic head. Extension to the wall of the gastric antrum, as well as encasement of the superior mesenteric vein.
    July 26, 2019 - Biopsy confirms adenocarcinoma
    August 8 , 2019 Start four rounds of FOLFIRINOX once every two weeks.
    September 20, 2019 - End of first four rounds of FOLFIRINOX.
    September 24, 2019 - Genetic Testing (via drawn blood) comes back as negative for all the known links to PC.
    September 27, 2019 - CT scan reveals tumor reduced to 4.6 x 3.2 cm, however there is evidence of the malignancy spreading to the lymph nodes.

  4. #14
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    I am a few weeks behind your wife in treatment, I get my fourth Folfirinox next Wednesday and then they are going to retake the CT scans. I am really hoping to see some reduction in the tumor size, Chemo has been a challenge but I am making it through and still working full time. I had my third treatment postponed a week because my White Blood Cell count got too low, they put me on Neulasta after I did my third treatment so hopefully that will help. That is a weird result that the tumor shrunk but they found some malignacy in the Lymph nodes. I hope that it is just an aberation. Do you know if they plan on doing radiation on your Wife after three months of Chemo, they mentioned they might recommend it for me but it was not definite, I am going to try and get more clarification when I see the Oncologist next week.

    Keith

  5. #15
    Keith:

    Yes, they mentioned Radiation at Penn. I will know more after tomorrow.

    We had a second opinion at Sloan Kettering on Tuesday (yeah, I know we got the 2nd opinion before the FIRST OPINION ! - just the way the time worked out). Sloan Kettering has a Dr. Crane who has done some phenomenal things with the SBRT. Please see the immediate link below. I also saw your comment about the View Ray and I will be looking into that also.

    https://www.youtube.com/watch?v=GQN-zlvAVfA

    Here's a link to Dr. Crane's reviews while he was working at the MD Anderson Cancer center in Texas:

    https://www.vitals.com/doctors/Dr_Ch..._Crane/reviews

    The picture (below) is very small, click on it to read it.


    RockStar.jpg
    Last edited by RamblinWreck; 10-05-2019 at 12:17 AM.
    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

  6. #16
    Keith:

    My wife has been on Nuelasta since the start. Penn insisted on it. I just assumed it was standard practice.

    With Neulasta, my wife's white blood cell count has been acceptable - though very low a couple of times.
    Last edited by RamblinWreck; 10-05-2019 at 03:05 AM.

  7. #17
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    I kind of wished they had me on Nuelasta to begin with as I have had fevers on a couple occations and have been on Antibiotics twice now during Chemo. I have to say though that extra week off Folfirinox was wonderful, I almost felt 100% at the end of that third week, but I hate to prolong this process even more so hopefully I will not have to delay another treatment. I have heard good things about Sloan Kettering, I am going to get a second opinion in Raliegh, NC at the UNC Chapel Hill center, the do the most Pancreatic cancer treatment in North Carolina and only a little over an hour away.

    Keith

  8. #18
    Update:

    We met with the oncologist today, and they suggested switching to gemcitabine nab-paclitaxel.

    This recommendation was based upon the (apparent) lymph node involvement between the two CT scans and the increased CA 19-9 readings between the first office visit (21,000 - 7-24), the first treatment (31,000 8-9) and the 2nd treatment (41,000 8-23).

    I pointed out the following:

    1. NO CA 19-9 readings were taken at the 3rd and 4th treatments. Thus, we only had ONE reading after treatment started, and that an increase after one treatment is NOT abnormal !

    2. The first CT scan was taken three weeks before any treatment was started. Therefore, we don't know, for certain, when the lymph node involvement appeared / increased. It's quite possible that the lymph node involvement peaked just before the first treatment which was three weeks AFTER the first CT scan.

    I requested that a CA 19-9 test be performed today and the results analyzed before we switch to a different chemo regime.

    The oncologist thought about it and said "I like how you think. We will obtain a CA 19-9 blood draw today and set up an infusion for Monday morning. The CA 19-9 results will determine which chemo we use Monday".

    Questions for the group:

    1. Am I the only one who thinks that the data analysis was suboptimal ?

    2. What's the opinion of the group on switching chemos ? I am of the opinion that as long as the rate of increase in the CA 19-9 shows a substantial drop compared to pre-treatment rate (or even hopefully a decrease in absolute value), that we should continue with the Folfirinox for at least one or two more treatments.

    I also found an article (link / graphic below) that stressed increases in the CA 19-9 values after the first couple of treatments should NOT be the reason for switching away from Folfirinox.
    Attached Images Attached Images
    Last edited by RamblinWreck; 10-05-2019 at 02:43 AM.

  9. #19
    One other point.

    My wife's oncologist doesn't believe in testing the tumors as "Pancreatic cancer is does not correlate with genetics."

    That is almost verbatim what is stated in the second paragraph of this paper:

    https://bmccancer.biomedcentral.com/...885-018-5240-6

    Maybe I misunderstood something.
    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

  10. #20
    Super Moderator Top User ddessert's Avatar
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    I think I agree with you. Those readings that you show in your link look like an extended and aggressive tumor response to treatment. While not usual, it could be happening and would be very unfortunate to miss out on.

    I also think that this oncologist’s opinion on genetics flies in the face of the most recent findings in the leaders of the field. This is why PanCan.org has their Know Your Tumor program and some pretty good (not outstanding) results thus far.

    If you want, have the oncologist consult with the UPenn pancreatic cancer oncologists. They are doing a lot with genetics and immunotherapy in pancreatic cancer.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

 

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