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DavesGirl70's Recent CancerCompass Activity

  • DavesGirl70 has replied to a post on the message board

    I re-sent my email but guessing it didn't go through. Perhaps trying from Gmail will help :) I did test my email sending to a friend and it is working. So bizarre!

    February 18 at 2:33 AM view post
    • DavesGirl70 has replied to a post on the message board

      Hey! I replied this morning but just got a bounce back notification now that my email wouldn't go through to the hotmail domain. I promise I'm not ignoring you :) 

      February 11 at 4:28 PM view post
      • DavesGirl70 has replied to a post on the message board

        Feel free to send me an email eve@evecourtney.net. I also wrote more about our experiences on my website evecourtney.net <3 

        February 10 at 9:05 PM view post
        • DavesGirl70 has replied to a post on the message board

          It is still a PARP inhibitor, yes He started out with a 3cm mass on the tail of the pancreas and "numerous" liver mets - you truly couldn't count them because there were so many. Within 1 month while we waited to see oncologist etc the biggest one in the liver grew from 6cm to 15cm long. Started FFX on Nov 8 and he responded dramatically. As of July 2019, the pancreatic mass is almost undiscernable on the CT scan an...

          February 10 at 8:57 PM view post
          • DavesGirl70 has replied to a post on the message board

            Ask about veliparib instead (different from Lynparza, but same class of drug) - it has been used in combination with a variety of chemotherapies One example: https://www.thelancet.com/article/S2352-3964(18)30637-6/fulltext 

            February 10 at 8:50 PM view post
            • DavesGirl70 has replied to a post on the message board

              Interesting re: ablation treatments! Can't say I know much about that (yet). He also experienced very low hemoglobin starting in November - it got as low as 62 at one point. A 4 week break and then lowering the dose to 200/day instead of 300 seems to be keeping it normal now. I haven't heard of what it might be called. I'm just reading through the abstracts that PhilipJax linked now - I'll definitely keep you posted...

              February 10 at 8:38 PM view post
              • DavesGirl70 has replied to a post on the message board

                Hey there, sounds like we have similar stories. My partner was diagnosed October 2018 (so we are also 16 months in), stage 4 with mets to liver, had FFX 14 rounds (last one was July 2019), then he tested positive for germline BRCA 1 mutation and started Lynparza Aug 2019 which has so far been keeping things stable (no progression yet, fingers crossed) but he has had low hemoglobin to the point where he's needed blood...

                February 10 at 8:20 PM view post
                • DavesGirl70 has replied to a post on the message board

                  Hi again, thought it might be time to post another update. Things are going well so far and I hope to give others some hope.  Diagnosed Oct 10 after biopsy confirmed metasatic PDAC with numerous mets in liver. CA 19-9 started out at 360,000!! First infusion of Folfirinox on Nov 8. CA 19-9 cut in half after one treatment and currently after 8 treatments is sitting at around 900! Pancreatic tumour on tail was 3cm...

                  March 26, 2019 view post
                  • DavesGirl70 has replied to a post on the message board

                    Thinking of you too and hope the clinical trial works out and stops/slows things. Dave has been trying Creon enzymes for digestion - not sure whether or not it has made a real difference but it can't be hurting. He had issues with vomiting (but not nausea, would just have to bring his meal right back up) after the first round that are now well controlled with the addition of apprepitant at chemo and cannabis oil thr...

                    January 13, 2019 view post
                    • DavesGirl70 has replied to a post on the message board

                      Thanks Baloo!! Yes, that's what we're thinking too - everything points to it being effective, we're just hoping that the CT scan confirms that too.  Thanks for the tip! Will definitely try the kaopectate!  Hope you are also doing okay?

                      January 12, 2019 view post
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