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shelby1's Recent CancerCompass Activity

  • shelby1 has replied to a post on the message board

    Hi, Just e-mail or call them. We did and heard from all of them that we contacted. P.S. make sure you have hard copies(disks) of ALL scans , tests and health history.

    July 31 at 12:29 PM view post
    • shelby1 has replied to a post on the message board

      Interesting problem. The Gemzar/Abraxane cocktail is more tolerable for some people than the Folfirinox. Both are for metastactic PC.  Why a clinical trial?  What are the side effects of the third medication compared to the Folfirinox?. You can Google OGX-427 for information as to the thinking around it. Would your mother be eligible for just the Gemzar/Abraxane if this trial doesn't agree with her or will ...

      July 28 at 2:43 PM view post
      • shelby1 has replied to a post on the message board

        This is exactly what happened to my husband  in 2012 but our doctor would not do a petscan  this year just CT scan only because of insurance. The tumor at the kidney site seems to be a "normal" progession of PC. as it's really in the middle of the body. We did SBRT but radiation didn't work in the past and not this time. The Hopkins site has people who went to Folfox for this type of tumor, we were too late...

        July 27 at 1:48 PM view post
        • shelby1 has replied to a post on the message board

          I know that the doctor there went to watch Dr. Martin in KY. Just call the pancreatic team at Hopkins they know.

          June 16 at 11:21 AM view post
          • shelby1 has replied to a post on the message board

            We had C-Diff and just plain diarrhea. We watched what we ate- no rich food, fats, greasy food etc. but we also took Benefiber with each meal-per doctor's orders. Adds fiber to absorb extra water. Worked for us for years. Wrong food was always our problem. Won't hurt anything either.  C-Diff testing is good idea too!!!

            June 14 at 2:47 PM view post
            • shelby1 has replied to a post on the message board

              I don't think so. I understand that PET Scans tell if there is cancer anywhere because the test "lights" up where there is lots of sugar where it shouldn't be. I don't think the scan could tell if the arteries or veins were involved. If it could many many aborted Whipples could be avoided. Our experience was that the PET Scans are more likely an insurance issue because they don't want to pay for it and push very hard...

              June 10 at 1:23 PM view post
              • shelby1 has replied to a post on the message board

                Hi, Fatigue is normal and probably your mother's worst enemy that causes lots of what she's going through. Our doctor gave my husband Remeron to help him sleep at night. It's an anxiety drug but it was given for sleep so he told my husband. Many PC people need it. After a little while on this she may go to the grocery store for a short time!   The fatigue will improve IF she is willing to go.   Good l...

                June 10 at 1:02 PM view post
                • shelby1 has replied to a post on the message board

                  He was off that chemo and he did seem better. When on he couldn't remember things that were just said or his eyes seemed to be empty? He would ask questions about things that were discussed. He was definetly confused and freightened by the confusion.

                  June 06 at 8:55 AM view post
                  • shelby1 has replied to a post on the message board

                    It is new and the machine is expensive. Johns Hopkins bought one so there must be something to it. It's used most often for liver problems very successfully but is new for pancreatic cancer. We had it 4 years ago and for that tumor it worked. The main problem is the insurance companies. If done "open" it is a major operation which is as close to a Whipple as you can get without removing the tumor. We highly recommend...

                    June 03 at 1:57 PM view post
                    • shelby1 has replied to a post on the message board

                      Hi, My husband was on the Gemzar/Abraxane and had a slight case of pneumonia within a month which seems to be a known side effect. Came on real quick.Slight fever only.  Also he did have episodes of confusion the longer he was on it. 

                      June 03 at 1:50 PM view post
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                      About shelby1

                      Caregiver
                      Pancreatic Cancer
                      Alternative Treatments, Cancer Treatments, Clinical Trials and Research, Radiation

                      Wife, mother, spouse of husband with pancreatic cancer, 60's Gemzar, Xelox, Nanoknife,

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