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PiperPilot's Recent CancerCompass Activity

  • 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=

    Thursday 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=

      Thursday 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...

        Wednesday 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
                • PiperPilot has replied to a post on the message board

                  This will be the last post from me on the matter... Proof to me would be some credible peer-reviewed scientific evidence.  But there is still none after decades. http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/laetrile.html http://www.cancernetwork.com/integrative-oncology/cancer-quackery-persistent-popularity-useless-irrational-alternative-treatments Unlike you I actually have bona-fide Stage IV re...

                  April 05 at 12:58 PM view post
                  • PiperPilot has replied to a post on the message board

                    Sorry, there is absolutely no proof that eating Apricot seeds will stop metastasis "100% of the time" or even 1% of the time. Plus, eating too many apricot seeds can be downright dangerous.  They contain toxins that, if ingested in excess, can kill you. This Apricot nonsense is just a disguised remnant of the thoroughly discredited Laetrile quack cure from decades ago. Skip it.

                    April 04 at 3:56 PM view post
                    • PiperPilot has replied to a post on the message board

                      Very sorry to hear what you are going through.  I have three important suggestions. First - find yourself an experienced renal cancer oncologist ASAP.  Your surgeon part is finished.  You need the expertise of an oncologist going forward. Two - register at: www.smartpatients.com and post your questions there.  It is made up of both patients and caregivers and there is a wealth of information. T...

                      March 29 at 3:35 PM view post
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                      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.

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