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Thread: Really struggling

  1. #1
    Newbie New User
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    Really struggling

    Hi everyone. I had posted a couple of weeks ago about my dad and his current situation and what heís going through but I am still struggling so much with all of this. I find so much comfort in reading some of your stories and would like to reach out again for anyone that can offer there insight. (Sorry for the long post) My dad is 63 and just recently retired. He found out on September 16th that he had a 1 1/4 tumor on the head of his pancreas. He came into the hospital jaundice and this is how the tumor was discovered. He had a stent put in which helped get rid of his jaundice. After getting a second opinion he ended up going with Roswell Park (Buffalo, NY). He had his first treatment of folfirinox on October 21st and handled it well. The week prior to starting, his oncologist and surgeon wanted to give another CT scan as well as perform a Laparoscopy to double check the smaller organs. They also took samples of cells from the stomach to test. Results came back showing no spread, no enlarged lymph nodes, and no cancerous cells. So we left that appointment feeling ready to go and positive knowing that he had a good chance of getting surgery once the tumor shrunk (it is not wrapped but up against a vessel). Now the dilemma.. right before his second treatment he got a bacterial infection and was septic. He now has to have antibiotics 3x daily until December 2nd. After that they will give another ct scan to see if anything had changed and then start back on chemo December 9th. I am trying to be so positive especially around my dad and my two sons but deep down I am falling apart. I am terrified that during this month of no treatment that his tumor will spread just enough to either wrap around an artery or spread. Does anyone have any thoughts to this. Is there a good chance for a spread? I know everyone is different but any insight would be great even if itís something I donít want to hear. Thank you for reading, I find comfort in coming here to read everyoneís stories and really appreciate how kind and helpful everyone is to each other.

  2. #2
    Senior User
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    Mar 2018
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    Your dad's situation sounds really promising. Unless he has a super aggressive disease it will most likely look much the same by Dec (this is my unprofessional, learned by anecdotes, opinion). I have a tumor pushing at the mes. vein that has been that way for a year and a half, after missing many treatments. If he responds well to the chemo, it will shrink down whatever growth did take place. Most important is getting rid of the infection so he can have surgery after the chemo.
    My Thanksgiving tip: if he is not overweight, encourage him to eat and gain a few extra pounds since many of us loose weight when starting 5fu type treatments (10 pounds here). This could be very important homework - nutrition is extremely important when struggling through chemo and an operation. Best wishes for your dad and family.
    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
    I have heard od a surgery done at Beth Israel where there was arterial involvement. That said, the thinking these days seems to be have some neo-adjuvant chemo for a while before surgery for a possibly better prognosis. I really don't think that after they were so certain there wasn't spread, that it would suddenly spread so quickly. I think waiting till early December isn't so alarming. And stress is the enemy! If he can try to stay calm, it's much better. Early on, someone recommended to me a book called "Radical Remission." I found great comfort and hope in it.
    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.

  4. #4
    Super Moderator Top User ddessert's Avatar
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    My recommendation is no more exploratory stuff unless it is necessary for treatment. I get the "feeling" from researchers and doctors that putting more stress on the body weakens the immune system and hastens the progression of cancer. While the immune system is not strong enough to fend off full-blown pancreatic cancer, it is still helping. Unnecessary stress is something to be avoided.

    Next, if the treatment is effective, a quick break will not change things much. The continuation of treatment will get the desired reductions whether there is a short delay or not. If the treatment was ineffective, the short delay will not change that outcome either.

    This is my considered opinion and it may be worth just what you paid for it.
    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

  5. #5
    Newbie New User
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    Thank you everyone for your insights, opinions, and for your suggestions. My dad is actually handling this very well and is very strong. Itís me who is the stress ball and having a hard time coming to terms with this, but again I never let my dad see that from me.
    Jackieb501, thank you for the book suggestion. I just ordered it on amazon and am excited to read it!!

  6. #6
    I think it will really give you hope and strength. Be well.
    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.

 

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