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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    I am suggesting quite the contrary, and am sorry I was not clear.  You are having a visible reaction, and the mouth sores you see are part of that reaction.  I would like to assume that the mets are similarly responding, shrinking away as is the intention of the medications.  Because your response is so strong, and your quality of life is impinged, it would be good to know if the mets are shrinking so ...

    December 16 at 8:43 PM view post
    • peggyznd has replied to a post on the message board

      That does sound pretty severe, and wonder what your doctor has advised you.  I would be pushing for a CT scan to check exactly what is going on with the mets, for all that reaction on the rest of your body!

      December 16 at 5:03 PM view post
      • peggyznd has replied to a post on the message board

        Most doctors will say that the side effects settle down after the first or second cycle.  Do be aggressive about dealing with the side effects, and ask for support.  It would be hard to give up on the drug if it is doing so well for you, so work to get through this all if possible. PeggyRCC

        December 16 at 1:10 AM view post
        • peggyznd has replied to a post on the message board

          If you have two brothers who have developed RCC, that is most definitely a familial situation, and you should all be seen by someone who is experienced with that type of RCC.  The usual oncologist will NOT have that experience.  The best place to start discussing this, so as to get a full understanding is at the NCI,National Cancer Institute.  I have included a link which will tell you a bit about her ...

          December 15 at 4:02 AM view post
          • peggyznd has created a new message board discussion

            01/10/2015 PATIENT MTG 08:00 AM - 03:00 PM ET NYU Langone Medical Center Alumni Hall B 550 1st Ave New York, NY 10016 Free Open to all patients, survivors and their families. This program will feature an array of medical professionals who will present on timely topics related to kidney cancer treatment and research. These topics include: surgical options, recent advances in genomics, n...

            December 15 at 3:50 AM view discussion
            • peggyznd has replied to a post on the message board

              I am not taking Votrient or any medication, as I have had a complete and durable response to High Dose Interleukin, now over ten years.  I do a lot of patient advocacy, and try to monitor studies, and science data to be accurate in what I say.  Votrient and Sutent have been studied to see how similar they are in effectiveness, which is about the same.  However, patients in that study seemed to prefer V...

              December 14 at 4:24 PM view post
              • peggyznd has replied to a post on the message board

                Since you obviously had a good run with Sutent, but needed to deal with the side effects, as per the decreasing doses, I wonder if you had also tried the two weeks on /1 week off with the higher doses.  This might get come more efficacy out of the Sutent, as it does require a certain level in the system to work, and the 25mg per week  is below that level. Also, if you are going to Votrient, you may have a ...

                December 10 at 11:11 PM view post
                • peggyznd has replied to a post on the message board

                  Glad to know that the decision was made to have surgery, but would also comment that the risk of recurrence is indeed quite small.  However, the newer stats show that there can be recurrence, even after 10years for primaries of this size, as it is obviously impossible to see the cells that might indeed have moved on to new locations in the kidney or near by.  The surgeon can only see that which is visible t...

                  December 10 at 11:06 PM view post
                  • peggyznd has replied to a post on the message board

                    Sheesh!  What an even more incredible story!  I have been doing some basic research in the literature about small RCC tumors, in the "got it all" size and treatment world, which recur up to 10-12 years later.  Too often, the patient, so relieved to be told that they need not worry, is just feeling confident again about their health, and the stuff pops up again.  It appears that there are some ccRC...

                    November 22 at 2:45 AM view post
                    • peggyznd has replied to a post on the message board

                      That is probably the longest time till recurrence I have ever heard of.  Since the first was found at your very young age, I assume that was a Wilms' tumor, and wonder if there was a recurrence of clear cell kidney cancer or some other type.  Glad to know that Votrient is being helpful to you, and that you have the measurable reduction.  Like to hear about your pathology, and wonder if there is a conn...

                      November 21 at 8:37 PM view post
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