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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    The trial with Argos might be interesting, but they may close that trial soon, so be certain to discuss that thoroughly.  A trial may be closed when they have enough participants, so that they can concentrate on the results.  If the doctor thinks that is the best trial for him, that is the reason for the delay in surgery.  He would be treated with Sutent and perhpas the vaccine which would be created f...

    June 28 at 2:11 AM view post
    • peggyznd has replied to a post on the message board

      Did your father have a nephrectomy in these last two months?  If so, that may be part of the reason for not starting any treatment which would interfere with the healing post-surgery.  i would be asking a series of questionsWhat did the biopsy show, what is the subtype, and how does this affect treatment options. What is the thinking for the next scans?  Could be that they wanted a more thorough/differ...

      June 28 at 2:05 AM view post
      • peggyznd has replied to a post on the message board

        I had a similar number of doses in the first two cycles/first course of treatment.  My mets were in the lungs only, but there were 100s of them.  I remember the dry,dry itching skin, and absolutely had to be lotioned ALL the time.  The best thing I found was a heavy duty Crisco-like goop from the hospital.  It was like old-fashioned diaper cream, though less oily.  That and extremely wierd sl...

        June 25 at 7:10 PM view post
        • peggyznd has replied to a post on the message board

          Dear Luisa, Glad to know you are through the surgery and getting back to normal.  GEtting the tumor out is not only good for the body, but also for the soul.  Only extra detail I would recommend is that you ask that the tumor be double checked, and any genetic studies be done.  If you are young enough to get pregnant, that signals that youb are quite young for kidney cancer.  There are new studies...

          June 24 at 3:26 AM view post
          • peggyznd has replied to a post on the message board

            It is entirely possible that the sweating and fevers is related to the tumor, and the body's reponse to it.  These are often called "cancer sweats", and in women, dismissed as menopause symptoms.  He needs to see a real specialist in RCC immediately, and frankly, few urologists and general oncologists have this kind of experience.  It is a rare cancer, and in your brother's case, more aggressive than w...

            June 13 at 3:37 PM view post
            • peggyznd has replied to a post on the message board

              Let me offer another support group which has a collective expertise about many of the situations you present, with delayed surgery, pazopinib, and with co-morbilities.  That iswww.SmartPatients.com.  The mix of issue you have require a pretty sophisticated look at what you are dealing with, and while getting some stability and response, this is the time to get a second opinion.  This is not just re the...

              June 13 at 3:29 PM view post
              • peggyznd has replied to a post on the message board

                With the tumor found at this small size, you have an excellent chance of no further recurrence.  There are two issues to keep in mind, however.  Your husband's young age might be a clue to a cancer with a hereditary connection, so should be screened genetically.  There is a new recommendation that kidney cancer found in people under 46 years should have that genetic analysis.  Also, some smaller t...

                June 13 at 3:22 PM view post
                • peggyznd has replied to a post on the message board

                  This is a fairly rare type of kidney cancer, and most oncologists may not have seen a case of it.  You are lucky to have the pathology to determine this, but a second opinion by a kidney cancer center at a large academic center may be valuable. Eleven years ago I was diagnosed with Stage IV kidney cancer, had 100s of mets in my lungs.  After surgery, I was directed to a high dose interleukin, whic...

                  June 13 at 3:17 PM view post
                  • peggyznd has replied to a post on the message board

                    I was diagnosed with a large tumor and 100s of mets in my lungs.  That was eleven years ago.  Despite the mess in my lungs, I am healthy and active today.  I was directed into a high dose interleukin program, too often not understood by doctors.  It revs up the immune system, and is thought to be especially effective with lung mets, with healthier patients, and with clear cell kidney cancer. I wr...

                    June 13 at 3:12 PM view post
                    • peggyznd has replied to a post on the message board

                      You and your mother need to see a specialist in kidney cancer, probably at a large academic center right now.  This is quite a mess,  and your mother cannot afford any more mistakes.  Gather ALL the records, both from the earlier time (sounds like you have some) and bring those, including all the scans and such with you.  Do NOT depend on the hospital to do this for you, and be aware that you may ...

                      June 13 at 3:09 PM view post
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