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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    I am a complete and durable responder to HD IL2, following a diagnosis of metastatic kidney cancer, with 100s of mets in my lungs.  That was ten 1/2 years ago, and I continue to be healthy, free of kidney cancer. I averaged only 8 doses per week, spread out over five days, for a total of four weeks in the hospital.  Though several of the largest of the lung mets shrank visibly after just two week/cycles or...

    May 20 at 4:39 PM view post
    • peggyznd has replied to a post on the message board

      Dear Magneto, I am so sorry to hear this diagnosis and that the cancer seems to have spread.  You may know that kidney cancer is reltively rare, and sarcamotoid even more so  There are very limited treatment options, and the best advice is to be absolutely sure that the doctor treating her is experienced.  That will be difficult, as few doctors are.  If you send me your email address, I will send ...

      May 10 at 8:52 PM view post
      • peggyznd has replied to a post on the message board

        Danny, The actual treatment of IL2 is always done in a hospital, with an experienced staff who know what the standard side effects are, and how to respond to them.  In effect, you are given a synthetic version of the body's immune response protein, which is what happens when you get a flu or infection.  The usual--nausea, diarrhea, fever, aches pains, sleepiness, chills and so on.  There is no pain or ...

        May 07 at 2:48 PM view post
        • peggyznd has replied to a post on the message board

          The  profound fatigue may indeed ameliorate with the coming cycles, but it is so important that you talk to your doctor about changing the timing to a 2 weeks on/1 week off, which will give the same amount of medication over the six weeks, but may make all the difference in your husband's ability to tolerate the drug. There are good studies to show that this is equally helpful, and if you write me at peggyzucke...

          May 06 at 6:26 PM view post
          • peggyznd has replied to a post on the message board

            Though there is a risk of stroke with Votrient, it is not common.  Each of the medications that might be given, including Sutent have side effects.  You can read about them online, from the manufacturers, the FDA and certainly your doctor can point you to good information.  The earlier message that a common side effect of Votreint is stroke is simply wrong.  Common sense will tell you that the FDA...

            May 06 at 6:17 PM view post
            • peggyznd has replied to a post on the message board

              You might also consider the use of ablation to kill this small mass.  There are good reasons not to lose any more kidney at your young age, and the sad possibility that there is a genetic component because it has presented in you at your young age.  Search out Dr. David McDermott at Beth Israel in Boston, talk about the possibility of a biopsy to determine EXACTLY which of the several RCC tumor types it mig...

              May 06 at 6:09 PM view post
              • peggyznd has replied to a post on the message board

                As I am sure you know, this is a rare and aggressive cancer.  It must be treated by an expert, and even more kidney cancer oncologists will lack a great deal of experience.  The most well-known doctor re rare kidney cancers is at MD Anderson in Houston, Dr. Nizar Tannir.  He would be aware of all the treatments, and any clinical trials.  If my daughter had such a diagnosis, I would bypass the good...

                May 06 at 6:02 PM view post
                • peggyznd has replied to a post on the message board

                  Your husband is relatively young to have kidney cancer, which means that you are wise to protect his kidney in any future treatments and in general.  Though there are many new treatments for kidney cancer that is metastasized, only offers a real chance for a cure.  Votrient, Sutent and other "targeted therapies" do help manage the disease, and there is a real possiblity at this time, that he would need to r...

                  May 06 at 5:53 PM view post
                  • peggyznd has replied to a post on the message board

                    I recognize that this is an older post, and hope that your friend has found effective treatment.  I have had Stage 4 RCC, and have learned an awful lot these past ten years.  I am alive because I responded to high dose interleukin, which was the first FDA approved treatment.  Now there are more drugs, offering more patients more options.  I write a blog about kidney cancer, do NOT sell anything, a...

                    April 29 at 4:48 PM view post
                    • peggyznd has replied to a post on the message board

                      One of the great and reliable online resources is the Mayo Clinic.  There is a multiple page explanation of a lot aobut essential thrombocytosis, and this link is for the treatment page only.  Go there and read the pages before and after, and that will help you understand more about the disease.  To have the disease already tested for, by which they know which variety it is, is a great help. http://ww...

                      April 29 at 4:43 PM view post
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