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Thread: Banging my head against the wall re lung mets treatment alternatives.

  1. #1

    Banging my head against the wall re lung mets treatment alternatives.

    I have posted this or something similar on a couple of other message boards. Just to follow-up on my attempts to get my lung mets treated. Actually it's more like a rant, sorry, I am so frustrated with the bureacracy, lack of creativity, and inability to get anywhere are 6 weeks of working on this.

    So first the onco's said no to any treatment. Dana Farber guy was pretty flip, he did however try to switch me out of the trial I am currently on into one of his, which I turned down. Dr. O'Reilly, to her credit, would not rule out local treatment down the road, she just wants to wait and see how things develop. I'm so good at waiting, you know.

    Next, the nano people. I just heard back from Dr. Martin's office - his assistant Melanie called, to complain about the order of papering. After explaining the situation, she said that 1) Dr. Martin does not do lungs and 2) Dr. Martin does not do mets. He only does Nano "once the mets is resolved", which assumes that the primary is still there I guess. I asked her if he had looked at my stuff, and she said this was just what she was instructed to say. I had a very similar conversation with Dr. Narayaram's nurse at U. of Miami. No. Mets. Period. I will try the guy at Stonybrook (also says no mets) just to close out the Nano loop, but just to cross the i's and dot the t's. He'll say no too, but maybe someone could tell me something better than "when it's out it's out, you're screwed" hello what about local control?

    Anyway, I have wasted research so mjuch time downloading, getting scans faxing, filling out papers, etc. with literally nothng to show from it. I haven't even LEARNED anything, which is even more annoying. Upon reflection I realize I was asking for too specific a treatment at times, conflating at other times. Not only am I not getting through to a doctor, I am getting through to an assistant of maybe the right doctor or maybe the wrong one.

    My new tactic is just to say, hi, I am looking for any local treatment - surgery, SBRT, Nano, rain dances, etc. I also believe that going to a pancreatic oncologist was a waste of time, after all I have a very good one. So a big part of the research problem is that it's like dealing with a large government. Should i ask for a lung specialist v. a PDAC guy, or a surgeon? an interventional radiologist or what? They definitely do NOT consult, so I almost feel that I am cut off from an entire institution because I can't have nano, but there may be other things that could be offered.

    So.......I have now reached out a little more broadly: a doctor that with his co-workers (Moffitt) wrote an article about intervention with lung mets in PDAC for example, other countries for example.

    Finally i have an appointment this month at JH with a lung specialist. But....she seems to have trained under Dr. Martin, so I'm going to call and make sure I'm not barking up the wrong tree again.

    Any thoughts/suggests or just plain counter-rants welcome. Chris
    9/25/16 - Distal pancreatonomy to remove growing "cyst" on tail of pancreas
    9/30/16 - Path confirms PDAC, 0/16 lymph nodes, clear margins, categorized 2A
    11/06 - start Chemo - Gemcitabine/Xeloda
    5/15/17 - Scan show growth in previously unidentified lung nodules. 1 in each lung
    5/30/17- Lung biopsy confirms PDAC in lungs
    7/17 - awaiting to be placed in immunotherapy trial at MSKCC
    7/17 - began Clinical Trial of KO-947, an ERK inhibitor
    9/19/17 Taken off trial, not doing anything
    9/21/17 considering FOLFIRINOX followed by some local treatment for lungs. CA-19 21
    9/21/17 also considering clinical trial at NIH
    9/17 - did not qualify for either NIH TIL trials, tumors not large enough
    10/15/17 - Began FOLFIRINOX. Fast mimicking diet has helped a lot with side effects.

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Oct 2013
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    BobInBonita had gone for quite some time without recurrence before spots showed in the lungs. I think this is the kind of situation that Dr. O'Reilly is looking for when she says she would not rule treatment down the road. What might be unsaid is that they're not confident that there are a LOT more metastases around that just aren't big enough to detect yet. They don't want to engage in a "whack-a-mole" style of treatment. That doesn't do anyone any good. Your counterargument is that, if it really is only these mets, then waiting for new ones is CRAZY! If you treat me like a worst-case condition, it only makes the worst-case more possible!

    I've made similar pronouncements, such as, when we are treated like the median, we tend to become the median. I think I'll tweet that one again...

    If that's you above, I'm on-board with your thinking. I've had similar discussions with surgeons about doing resections on "borderline resectable" patients. But since I'm not "in the field" and only a patient, my opinion doesn't carry much weight.

    In these situations, I try a little different approach. I say to myself, "what is it that drives these people"? What are they thinking (I did a little of that above)? If I know where they are coming from, I'll be better prepared to make a more persuasive argument (to them). I'm getting into the thinking-while-typing mode here...

    Right now, I think they're waiting until you have a long-term period without any new lung metastases. That means doing some sort of treatment that works for you. If you had one that worked well previously, it might be one to consider again now. If you have genetic testing done, look back to those choices now. This is the "expected" treatment track. What I think they're looking for (confirm with Dr. O'Reilly - you're more likely to get an honest answer).

    If you cannot wait, I truly think you're then asking for help outside the established science. That's a risky area and one I'm (and this board) is not willing to entertain.

    The most pertinent question (for Christine D) might be, what is the path to maximum survival? If this is your question, framing it like this to your doctors might generate different answers.
    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

  3. #3
    Senior User
    Join Date
    May 2014
    Christine, have you looked at the CAR T cell trials that I posted in the other thread. I don't believe any local hospital can do such high level trials. It involves taking your immune T cells and modifying them in the lab and infusing them back to you. You need to get tested for the markers they need for the CART cells to work.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.


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