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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    There are a range of studies which are working at improving the delivery system, which is essentially what this is.  The body trying to keep in balance, but with numerous opportunitities for things to go wrong--mutations of many types--the immune system can be overwhelmed.  After a certain period of acquienesce, those cancers can circumvent the immune response, and then are able to tamp down the very respon...

    January 26 at 4:47 AM view post
    • peggyznd has replied to a post on the message board

      I am impressed how well your husband is doing despite that large tumor, and especially that he has done far better than the doctor's prediction.  Good to know that he is getting Xgeva to keep the bones less susceptible to the mets, but really think that you should get an opinion re the radiation to the bones.  As a minimum, that could provide some pain relief, and may be helpful with the Votrient in pushing...

      January 25 at 6:13 AM view post
      • peggyznd has replied to a post on the message board

        Dear Ballas, This is a pretty unusual situation you describe.  If it had been a total of 3 times, I would not say that.  I worry that you are not getting adequate treatment and not from an expert in kidney cancer.  In addition to that, fewer than 1% of people get kidney cancer at that young age. Kidney cancer is usually found in 60-70 year olds, so this indicates that there might be either a genetic/f...

        January 16 at 9:54 PM view post
        • peggyznd has replied to a post on the message board

          Is there another location for the trial?  Very often, it is difficult to recruit patients, so another location might be very happy to have you in their equivalent trial.   PeggyRCC.com

          January 16 at 2:35 AM view post
          • peggyznd has replied to a post on the message board

            That would likely depend on where the mets are found and the size that they are.  There are varying types of imaging, X rays, MRIs, ultrasound, CT, PETs and PET-CT, and each have varying best uses.

            January 13 at 6:31 PM view post
            • peggyznd has replied to a post on the message board

              Dear Jboth, I would love to say that you never need to worry again about  your former RCC, but the reality and the stats are that there is a possibility that this can recur.  The size of your tumor at 12 cm is the reason alone, as that indicates that it had been around a long time, had many years to send out feelers/colonists and/or mets.  The hope is naturally that your system which kept it from bein...

              January 12 at 5:13 AM view post
              • peggyznd has replied to a post on the message board

                Dear Paradise, You are probably fine as per your understanding of the report given you, except for the fact that you were diagnosed with "unclassifed". That is rare, as you likely know, and without a clarification of that was meant by that, may put you at risk.  THat risk can be monitored, of course.  For your peace of mind, you should request all the info about your case, your surgical report, all that le...

                January 08 at 10:29 PM view post
                • peggyznd has replied to a post on the message board

                  There a number of excellent centers, including UCLA, Cedars-Sinai, City of Hope,and USC in the greater LA area.  As point of interest, each of these and the others cited previously may or may not even offer the treatment that cured me--if nearly 12 years of no RCC after a Stage IV killer diagnosis equals a cure.  Officially I have an "ongoing partial response" to Stage IV clear cell RCC, thanks to high dose...

                  January 08 at 7:05 PM view post
                  • peggyznd has replied to a post on the message board

                    There are many patients who must start at a lower dose on Votrient and thus can stay on it, and gradually move to a higher dose.  This is the general recommendation, but can be overlooked by some doctors. There are a number of patients on www.SmartPatients.com who have been discussing side effects of Votrient, so go to that site, sign up and share your questions there.  Very helpful to talk to others, as y...

                    January 08 at 6:57 PM view post
                    • peggyznd has replied to a post on the message board

                      For anyone who wants more info on chromophobe and/or sarcomatoid differentiation RCCs, please be aware that I have gathered a very large library of medical articles.  They can be difficult to read, quite obviously, but certainly with a few attempts, give you a sense of the issues involved and the research taht is going on.  If your doctor is not a specialist, and you cannot get to one, give him these articl...

                      January 08 at 6:45 PM view post
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                      About peggyznd

                      Patient

                      I am an eleven year survivor of Stage IV RCC, clear cell, post a radical nephrectomy and high dose interleukin. HD IL2 rid my lungs of 100s of tiny mets. Since that time, I have tried to help others learn about all their options, whether surgery, IL2, targeted therapies, highly directed radiation and the newer checkpoint blockade drugs. My blog at www.peggyRCC.com is part of that effort, with a concentration of RCC issues, lectures from others which can be read and printed, and all chosen for their medical value to patients in this battle.

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