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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    Very glad to hear that you are getting on the road to recovery.  The pathology report is very important, and you should have heard by now, it would seem.  Do keep a copy of that and all the imaging which you have had and will continue to have.  The doctors are generally correct in that a small tumor completely removed can be watched with less urgency than a larger tumor.  However, one of the hallm...

    Wednesday at 12:59 AM view post
    • peggyznd has replied to a post on the message board

      Sounds as if you are being well monitored, which is important.  I have just heard of a friend of a Harvard doctor who had a nephrectomy, was monitored properly for five years, and then   was released from followup. About four years later, he felt bad, unexplained things, and was found to be metastatic, and you know the rest.  Monitoring would have made a difference there. Peggy Z

      Tuesday at 6:18 AM view post
      • peggyznd has replied to a post on the message board

        Dr TAnnir is very well-respected by those who have this more unusual form of kidney cancer.  I am sure you can find some person through www.SmartPatients.com and their kidney cancer group.  You can listen and read a lecture he gave a patient group two years ago on my blog at www.peggyRCC.wordpress.com, and look for Tannir.  He is much beloved, and the go-to guy.

        September 14 at 1:50 AM view post
        • peggyznd has replied to a post on the message board

          You can read and listen to a lecture about the side effects--which could well include shrinking your tumor!--at my blog www.peggyRCC.wordpress.com.  Look for Dr. Hutson's lecture from a kidney cancer patient forum at MD Anderson in Texas.

          September 14 at 1:47 AM view post
          • peggyznd has replied to a post on the message board

            I second this advice to be seeing a specialist, and not just for the cancer, but also for dealing with the side effects.  There are always some side effects, and some might even be thought of as proof that the meds are working in you,  I also recommend going to www.smartpatients.com, and asking for a referral to a doc in your area.  Also I have a blog t www.peggyRCC.wordpress.com which cn be an educati...

            September 14 at 1:45 AM view post
            • peggyznd has replied to a post on the message board

              Dutch, Where did you go for the trial, and are they still doing follow up on you? What kind follow up, CT scanning or such? There are probably others on the trial and you can find them by registering on www.SmartPatients.com in the kidney cancer group.  Lots of experience there. I also write a blog, www.peggyRCC.wordpress.com, which might an extra resource.  I was a Stage IV RCC person with mets in lungs,...

              September 14 at 1:41 AM view post
              • peggyznd has created a new message board discussion

                Kidney Cancer Education and Support Group, Orange County, CA Patient Meeting 09/20/2014 10:00 AM - 12:00 PM PT Kaiser Permanente, Fifth Floor, Room C2-C3, 6650 Alton Parkway Irvine, CA 92618 Admission:Free This meeting is free to attend and open to all patients and survivors and their families. Kidney Cancer Education and Support Group Meeting - Orange Coun...

                September 11 at 4:07 AM view discussion
                • peggyznd has replied to a post on the message board

                  Second the recommendation re SmartPatients, and also hope my blog at www.peggyRCC.wordpress.com would also be helpful.  Lectures from a patient conference in 2012 are the best place to start.Peggy Z

                  September 10 at 7:34 PM view post
                  • peggyznd has replied to a post on the message board

                    Just a quick searchonline brought me to this page, with several other resources.  I would start with the ACOR group, as the kidney cancer version from early ACOR days was invaluable.  http://www.carcinoid.org/content/online-support-and-discussion-groups As hard as it is to deal with the thought of cancer, it is far better to know what you are up against, as it becomes a more fair fight!

                    September 10 at 7:28 PM view post
                    • peggyznd has replied to a post on the message board

                      Knowing that you are doing well now,I would still remind you that there is indeed an FDA-approved treatment that can give a small percentage of people a complete and durable response.  In my case, it is now ten+ years of such a response/cure, despite a similar sized tumor and 100s of mets in my lungs.  That treatment is high dose interleukin2, an immune therapy that revs up the system, so that the body reco...

                      September 04 at 1:05 AM view post
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