Loading...

PiperPilot's Recent CancerCompass Activity

  • PiperPilot has replied to a post on the message board

    Hi Peggy.  Just a clarification.  Cabozantinib is not an immune-stimulant. It is a small molecule inhibitor of the tyrosine kinases known as c-MET and VEGFR2. In this regard it is similar to Sutent or Votrient, etc. but with the new addition of c-MET inhibition. It has been approved for the treatment of Thyroid cancer (so far) but not renal cancer.  It is marketed under the tradename Cometriq. It ha...

    May 22 at 1:05 PM view post
    • PiperPilot has replied to a post on the message board

      Not sure if this message was for me or not. But I am happy to send you a copy of my guide to nutrition via direct email (it is a 65-page .pdf file). To do so, send me a private message including your email address and I will then send it directly to you. Best wishes, -PP

      May 14 at 2:16 PM view post
      • PiperPilot has replied to a post on the message board

        http://en.wikipedia.org/wiki/Ezetimibe NOTE:  ALL statins have side effects.  It is best to avoid them completely.  If you are not convinced, at least read Dr. Malcolm Kendrick's book (The Great Cholesterol Con) before swallowing the Kool-Aid: http://drmalcolmkendrick.org/

        April 21 at 9:06 PM view post
        • PiperPilot has replied to a post on the message board

          Add this on to the end of that link above: knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

          April 17 at 1:26 PM view post
          • PiperPilot has replied to a post on the message board

            Amber. Here is an excellent presentation about the potential of the new immune therapies (originally posted over at SmartPatients): http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

            April 17 at 1:25 PM view post
            • PiperPilot has replied to a post on the message board

              By all means try to get your Mom into the clinical trial of MPDL3280A.  It is an anti-PDL1 immune therapy from Roche.  If it works it promises long term remission.  The side effects are usually quite mild and short lived. I am presently in a clinical trial of an anti-PDL1 drug manufactured by a different company (EMD Sorono).  It is too early to say how well it is working but preliminary indicati...

              April 16 at 4:12 PM view post
              • PiperPilot has replied to a post on the message board

                Very sorry to hear what you are going through, Pizza. Have you discussed the possibility of lowering your Votrient dosage with your oncologist? I would like to suggest that you register at: www.SmartPatients.com and post your question(s) there.  You will find a lot of excellent advice from other patients and caregivers who have dealt with similar side effects on that websie. Best wishes, PP

                April 15 at 1:30 AM view post
                • PiperPilot has replied to a post on the message board

                  Sutent is a tough drug for many patients.  From what you are describing I think your dad's condition is mostly a reflection of dealing with the side effects from this drug. It certainly would be helpful if at least one of your parents were more forthcoming with all the details of your dad's disease.  But TKI's like Sutent, as hard as they may be on the patient, do afford the possibility of turning mRCC int...

                  April 10 at 2:04 PM view post
                  • PiperPilot has replied to a post on the message board

                    You did not say if she is now under the care of an oncologist who is experienced with renal cancer. Generally Chromophobe is considered an indolent (i.e. slow growing) histology. However, if it turns Sarcomatoid it can become very aggressive.  That is why she needs to be under the care of an oncologist who is experienced with RCC.  This is very important. I would suggest registering at: www.SmartPatients...

                    April 09 at 2:20 PM view post
                    • PiperPilot has replied to a post on the message board

                      You need to consult with an oncologist experienced with renal cancer - not your urologist.  His work is now finished. Do so ASAP.

                      April 09 at 2:16 PM view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About PiperPilot

                      Left nephrectomy in May 2010.
                      Chromophobe RCC
                      Furman Grade 3 with extensive necrosis
                      Primary Tumor = pT2
                      Lymph Nodes = pNX
                      NED until July 2012.
                      July 2012 = Lytic lesions involving anterior T4 & right anterior T5 bodies; Expansile grade right sacral coccygeal lesion 4.3cm x 2.6 cm; Left proximal femoral lytic metastases.
                      On Sutent-50mg/day and Xgeva (monthly)

                      I have had no significant side effects taking Sutent/Xgeva for over 8 months now.

                      I have written up what I have discovered and what I am doing to minimize side effects, etc. in a .pdf document that I am happy to share with anyone interested. In particular it outlines the science and rationale behind the diet and supplements that I take.

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.