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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    Think about the following:  if you were a big pharmaceutical company or wanted to become a big pharaceutical company, and could sell lots of laetrile/lemon juice/apple seeds or similar through doctors and hospitals, wouldn't you just do the testing and so on to prove it worked, accordng to the claims?  All the miracle cures which may or may not work for the "friend of a friend, or person I heard about" may ...

    April 06 at 6:25 PM view post
    • peggyznd has replied to a post on the message board

       Paul, I have a series of articles about this XP 11.2 and related subtypes, which might be helpful in seeing your options, and may be of interest to the doctor.  With RCC in general, you need a expert, and especially with rarer subtypes.  Write to me at peggyzuckerman@gmail.com and I will send you those articles.  Good that they are checking the genetic make up of the disease, as that can change ...

      April 03 at 5:07 PM view post
      • peggyznd has replied to a post on the message board

        There is a link below which explains that a number of states offer a program through which unused drugs for cancer relief may be given to be redistributed to patients in need.  Obviously that pateitns needs to have a prescription, proving that the medication is so prescribed.  This is  a wonderful way to share unused medications, though I am also aware of individuals giving such meds to one another. I...

        March 26 at 8:58 PM view post
        • peggyznd has replied to a post on the message board

          Immune therapy is not new.  There have been immune therapies of many types for many years.  For the most part, they have not been successful, often because researchers did not know exactly how they worked, or with whom they worked.  I am alive today because of an 1992 FDA approved immune therapy, High Dose InterLeukin (HD IL2), which essentially is a synthetic version of the body's immune system protei...

          March 13 at 4:54 PM view post
          • peggyznd has replied to a post on the message board

            The most important question you can ask in this regard is not if anyone is doing immunotherapy, but if immunotherapy has any track record in helping with your particular type of cancer.  I had Stage IV kidney cancer with mets all over my lungs, ten years ago.  I am healthy today because of an immunotherapy called High Dose Interleukin, which can be effective against the most common type of kidney cancer an...

            March 12 at 11:58 PM view post
            • peggyznd has replied to a post on the message board

              Sounds as if you are off to a good start.  The biopsy is not really necessary, as you will have plenty of tumor to deal with after the surgery.  If he suggests that the radical (or complete removal) nephrectomy is the best, be happy, as you do not want to make it harder to get the tumor out.  good news that it has not gone up the vena cava.  A chest x ray is not as accurate nor does it have the r...

              February 25 at 5:47 AM view post
              • peggyznd has replied to a post on the message board

                You can indeed have HD IL2 after chemo drugs, which generally can refer also to the "targeted" drugs, like Sutent and Avastin, Inlyta, Afinitor and such.  The most important thing is a thorough check of the lungs and heart, although just having mets in the lungs--not yet symptomatic--will not disqualify you.  Most doctors have no experience with this drug, and therefore will not have up to date info on it.&...

                February 24 at 7:25 PM view post
                • peggyznd has replied to a post on the message board

                  clambert, Sorry to hear that you have just been diagnosed, and you must be in shock, as I was when I was similarly diagnosed.  However, it has been ten years, and though I was lucky to get the treatment I did, I have since learned that luck is not that reliable!  Are you working with a very good surgeon, experienced in this field?  Since RCC is a tricky and little-known cancer, it is critical that you ...

                  February 24 at 7:10 PM view post
                  • peggyznd has replied to a post on the message board

                    Re the treatment and dose cycles of Sutent.  There are many RCC doctors who recommend 2 weeks of 50mg Sutent, followed by 1 week off, which will give the same amount of drug over the six week period, and is often far more tolerated. The challenge is that the drug must reach a certain level in the body to do its work, and there must be a balance of that against the side effects which make it hard on the patient.&...

                    February 24 at 6:56 PM view post
                    • peggyznd has replied to a post on the message board

                      You might try to reach Dr. Tannir at MD ANderson, as the fact that this has occurred in your young daughter may indicate that it is a more rare version of RCC.  Also, you may wish to ask in your family for any disease history, as there could be a family element in the disease.  RCC is somewhat rare, and does not occur that often in younger people unless it is one of the variants. As to HD IL2 and its being...

                      February 24 at 6:50 PM view post
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