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Thread: My new plan

  1. #1
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    My new plan

    I'm a year and a half out since diagnosis with stage 4 - mets to the liver - a couple of lung modules and a partial thrombosis in the portal vein. Gem/abraxane/cisplatin worked well for the first treatment, now I've been on low dose 5fu type treatments and they don't seem to be effective as they were a few months ago. Now looking at more progression and dying in a few months. There are a couple more things that I can see to try - full strength folfirinox, parpi, maybe a checkpoint inhibitor or other immune type therapy if I can figure out how to pay for them. I'm pretty much not going to be able to access clinical trials since platelets are consistently lower than the threshold for inclusion in the studies. My plan now is to debulk the tumors as much as possible and hopefully have more time as they grow back - or maybe even don't grow back. I have kids and a few more months will make a great deal of difference for our family. I've scheduled an IRE surgery where the primary will be treated along with several (4 or 5 I think) liver mets. I've been looking into this procedure for quite a while and feel if it might help I would like to try rather than lay dying wishing I had tried. It is open surgery and there may be complications - infection, abscess, losing more weight, feeding tubes, blood clots, dying! Also, for a few weeks I won't be able to try any of the above mentioned therapies that might work due to recovery from the surgery. If it is successful at debulking I'm hoping it will be easier to treat me - seems like if there is less cancer total, those individuals have an easier chance of control. Purportedly, IRE can cause an immune reaction that may be beneficial especially if I could then access immune drugs after. There is also some thought that it might be able to "reset" the reaction to Chemo drugs - possibly making me sensitive to these again. Don't know about these last two so am not banking on it.
    I wanted to bring this up to the forum for any ideas anyone has as to after surgery treatments. We're a pretty big group and treatments vary. I'm hoping for your thoughts!

    Susan - I pm'd you!
    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

  2. #2
    Good Luck !

    My heart breaks for you and your family.
    Last edited by RamblinWreck; 11-08-2019 at 02:26 AM.

  3. #3
    Super Moderator Top User ddessert's Avatar
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    It sounds like you want to fight until the end! There is a NanoKnife Surgery Warriors Facebook group to check out (say Hi if you’re there). I just posted a question about IRE/PET scans there based on your OP.

    A doctor recommended that my father (also with mets) have a PET scan to see what are the most active tumors in his body and that may tell you what needs to be treated more urgently.
    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

  4. #4
    Jamie, I am so impressed with your no-nonsense attitude. I know someone who had nano knife at stage IV and is still alive after something like seven years. This is not necessarily the end game! Feel free to PM me.
    I, too, am wondering if cells reconfigure after some of our procedures. FFX didn't work for me, but I'm wondering if it would post-radiation. You haven't done any kind of radiation?
    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.

  5. #5
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    Thanks for the luck Ramblinwreck. And thanks Daviddessert for posting the question about pet scans on nanoknife warriors. It was interesting to read what Dr Donoway (he's my surgeon by the way) posted in response about all the varied ways we can be imaged. I appreciate ANY other thoughts or ideas you may have. I have great respect for all the research you have made available for us (so that we can understand it!). Jackie, I have not tried any radiotherapy since it was felt that my platelets would not hold up. Wouldn't it be great though if that did cause a shake up with the cells and a positive response to stretch out chemo or activate immune cells?
    Thinking back the last year and a half, I'm mostly happy with my treatment. I wish, wish that I had realized a few things earlier like chemo doesn't work forever despite examples like the cpi-613 guys. Maybe 6 -8 months average? And no guarantees that the other chemo treatment is going to work at all. Another thing I have thought hard about (new people hear this), is if you are stage 4, you are not necessarily relegated to Chemo only. I definitely did not have a good understanding of this - I was told chemo only for stage 4. If you have only a few metastases (oligometastasis), in one or two parts of the body, you may be treated radically differently - possible surgeries, IRE, etc. If you can manage to remove those metastases (say through IRE), now you have just changed your stage which changes everything. Other factors like stability weigh in too. And the mindset of the Dr treating you.
    I do hope I can fight this to the end and that we all can push it out as far as possible!
    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

  6. #6
    Jamie Pat:

    I also wish to thank you for bringing IRE to my attention as I had never heard of it before. It seems like this would also benefit ALL PC patients, but I am guessing that because of surgical risks involved they save it for stage 4 patients.

    The link below describes a laparoscopic IRE technique developed in Italy:

    https://www.ncbi.nlm.nih.gov/pmc/art...9/pdf/main.pdf
    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

  7. #7
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    Interesting link - thank you. Actually, very few surgeons perform this for stage 4 patients. It is probably best used for stage 3 to reduce the tumor away from blood vessels in hopes of following it with a whipple. However, it has added time for some stage 4 patients and you have to applaud the (few) surgeons doing this. If you think about it, since 85% of whipples progress to stage 4 anyway, the bulk of us will be stage 4 - just at different times. I admire the surgeons trying to help us stage 4's and I hope they somehow keep and share a database that can reflect their work.
    I would love to have laparoscopic IRE but it seems they have better success with open surgery. But, with new techniques, maybe in the future.
    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

  8. #8
    Senior User
    Join Date
    Mar 2018
    Posts
    152
    Jamie my thoughts and prayers are with you!!! Keep fighting. You sound like you have gained some great knowledge. I am so confused what to do in my case if this FFX does not work. ( i now have mets OUTSIDE of my liver).

    Keep us up to date! God Bless!!!
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  9. #9
    Senior User
    Join Date
    Mar 2018
    Posts
    150
    If the FFx doesn't work, you mentioned parp inhibitors. Are they still thinking about it? My oncologist also has suggested these. Might be a good try. Maybe we'll be on the same treatment......! Keep thinking and thank you for the good wishes.
    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

 

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