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Thread: Dad's Treatment Starts Tomorrow

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Dad's Treatment Starts Tomorrow

    It has been a long time in the making, 31 days since the CT scan results showing metastatic cancer, but dad's treatment may finally start tomorrow.

    My father and I have talked about how difficult chemo can be. But we never talked about how hard is would be to get to chemo.

    My wait was only 13 days. I suffered the extreme weight loss, but other than that, our experiences are very different. The lengthy delays have allowed the tumor to cause more havoc. His oncologists seem to assume that the delays only mean the tumor grows little bit larger. They are unaware and not personally affected by the side effects of tumor growth: weight loss, loss of strength, anxiety, depression, pain, duct blockages, etc.

    The longest delay has been from needing a ureter stent to allow one of his kidneys to drain properly. His urologist's proclamation that this was a 5-minute procedure was apparently only from his perspective, not ours. It took us 3 weeks to schedule and finally get that stent placed. All the while, my father has been losing weight and strength.

    Most recently, the delays have enabled the tumor to grow enough to cause a bile duct blockage. His liver enzyme levels are 5X normal, skin and eyes are yellow, and stool is pale white. All classic signs of jaundice and confirmed by ultrasound. Now his GI thinks he should have an MRCP to look at it better. But an MRCP can do nothing to fix it. So what good is another look at 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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  2. #2
    That must be so frustrating for you, someone who has so much knowledge about this disease, and so much awareness about what can help him, to see this dragging on seemingly unnecessarily. I'm not exactly sure what an MRCP is. Would that delay things further?
    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.

  3. #3
    Super Moderator Top User ddessert's Avatar
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    My issue with ordering an MRCP is that it does nothing to fix anything. It feels like this is all leading to an ERCP which will do the same imaging, but then will also let them place a stent to (temporarily) fix the problem. So it seems like an unnecessary test that will eventually lead to another test and intervention.

    If the intervention is necessary, then get on with it! Otherwise, leave my dad alone.
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  4. #4
    I can't help but just shake my head in disgust after reading your post, there are some good people that inhabit the medical profession but the profession as a whole leaves a lot to be desired. I am sorry your father is going through this, his story seems to be all too common when dealing with the logistical nightmare of the profession.

  5. #5
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    David, I’m keeping your Dad in my thoughts and prayers as he starts chemo today. Hopefully the chemo will help to relieve some of his symptoms and make him feel better without too many side effects.

    If you don’t mind me asking what chemo is your Dad taking?
    Last edited by KimberlyL; 03-14-2019 at 12:03 AM.

  6. #6
    Super Moderator Top User ddessert's Avatar
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    My father is taking Gemcitabine/Oxaliplatin every two weeks. This is due to his BRCA2 mutation, advanced age, and recent kidney blockage. I had Gemcitabine/Cisplatin (a bit harder on the kidneys), but that was before FOLFIRINOX was a treatment.

    He had his treatment today and felt pretty good. I attribute that partly to the corticosteroid they gave him that doubles as a antiemetic (for nausea). I think that tomorrow will be a different story.

    My brother has been unable to visit at all since dad’s diagnosis. He caught some sickness while traveling and brought it to his home with him and it’s moving around his family. Now his wife may have pneumonia.

    My sister has been with him and my mom for the last two weeks. She has found allies in the various nurses who are helping us more and more.

    My sister said the nurses asked what I do (to know so much about PanCan) and are concerned about what I think about their treatment decisions. “Is your brother going to be okay with ...?” LoL!

    They wanted to give my dad Gemcitabine one week and then Cisplatin the next week. So that every week he would have a treatment. I made some comment about never having a good week between treatments and they changed it to the more standard every two weeks schedule.

    If the treatment is too harsh on him, I will ask for the reduced dosage, too. Platinum has been extremely effective in our BRCA2 family (his sister and me), so I’m not too worried about effectiveness. At age 82, we are looking a quality of life, not just more time for the sake of time.

    One strange thing was that his blood lab results for CA19-9 said “>40,000”. I pressed the nurse for a more specific result as we can use it to gauge the treatment effectiveness between scans. She checked into it and the lab reported that due to state law, they could not provide the exact count when the reading is >40,000. Well, I know bullshit when I hear it, but I am checking with some Florida PanCan doctors and PanCan.org to see if they have ever heard of such a thing. Not sure how far I can push that if it really comes down to it, but >40,000 is not that useful.

    But what that episode also tells me is that people who don’t want to explain themselves will spin a story just to avoid being accountable. Even if you can’t hold them accountable, it is good to know who those people are so you know how to value what else they say. This is not the first medical provider to do this during my father’s treatment.

    I imagine I’ll try talking to the lab directly (not involve the nurse and make her be the “bad” person) to try and get the right numbers. If necessary, I think I can push it via the insurance providers as they’re the ones paying most of the bills. Always follow the money!

    Since dad’s ureter from his kidney was unblocked, he has been gaining weight. From his low of 142 lbs back up to 150. That he was getting treatment and expecting good results might have also helped.

    He said they gave him a subcutaneous implant of slow-release 5-day anti-nausea medication. That was not a thing when I did treatment 8 years ago. That will really help because hated the 6- and 8-hour interval between my two nause medications which meant waking up to medicine alarms every 2, 4, or 6 hours.

    For those of you who read this far, I’ve been making a series of video status updates that I will eventually post to my YouTube channel. I’ve often tried to remember how it was for me when I was going through treatment myself and I have a few writings - even on this forum. But time changes many perceptions so that having this video diary might be helpful. I also make note of what I’d do differently in each video. There’s always room for improvement. Look for that series of videos in the months to come. Just too much going on right now to edit those now.
    Last edited by ddessert; 03-14-2019 at 06:57 AM.
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  7. #7
    The Video posts sound good. Best wishes.
    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.

  8. #8
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    David, Thanks for the answer on the chemo regime your Dad started. I'm happy to hear that it went smoothly yesterday and am hopeful that he is still doing/feeling okay today.

  9. #9
    Super Moderator Top User ddessert's Avatar
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    Dad really took advantage of the steroids with the chemo yesterday and probably overdid it. Stayed up until 1am. Today he paid for it by having to sleep most of the day.

    My sister called me to ask if this is going to be the "worst" day. Perhaps tomorrow will be just as bad, but then it should get better slowly.

    Dad will have to learn what works best for him, just as I did.

    I've been thinking more about his quick mental decline. The decline started before he began chemo, so the possible reasons I came up with are:
    a) low blood sugar;
    b) electrolyte imbalance;
    c) organ failure;

    His latest blood test results from the morning before chemo should help me narrow it down.

    Also, I figured out what is happening with the CA19-9 ">40,000" result now. I called the lab technician and they gave me a different story than my sister got. But at least this one makes sense and tells me how to get around it.

    Apparently their in-house CA19-9 counter only goes up to 40,000. To get readings on higher numbers, they have to dilute the sample and re-run the test. That means, dilute the original blood sample with 9:1 water (or something) so that it is 1/10th the original concentration. They they re-run the test and get a number of 21,000. That means that the original sample's CA19-9 was 210,000.

    The reason they don't want to give out those numbers is that their 9:1 mix ratio is not that calibrated so that the final result has more error in it than they've specified.

    My fix is to ask them to send the test tube of blood to LabCorp or Quest and have them run their test. It really does me no good to get the >40,000 result.

    The lab tech tried to convince me otherwise, but I convinced her instead. I said that starting at a number of 210,000, it could drop by 5X and still their undiluted test will show ">40,000". Chemo could be working really well or failing miserably and we'd still be geting ">40,000" from their test. So it's best if we just send the sample to LabCorp or Quest.
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  10. #10
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    David,
    I had the same experience with lab results giving a worthless "CA19 over 40,000" . Not sure why - probably a lab screw up? Regarding your dad's treatment schedule, metronomic treatment might be something to consider if he has a hard time. I have just started a 5fu based treatment that results in a full dosage but is given in smaller chunks once a week. Does not feel like I'm getting chemo at all, just the funny zings with cold water, very mild bathroom issues and that's about it. Good energy level and appetite.
    Best wishes and I hope things go smoothly from here on out. I'm chuckling thinking of the nurses reactions to your experience and can't imagine they have ever met an advocate like yourself!

 

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