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jane99's Recent CancerCompass Activity

  • jane99 has created a new message board discussion

    I had a nephrectomy 10 years ago and my kidney function blood levels have been perfect...until about 6 months ago when things started to go haywire.  My creatinine started inching up little by little and is now 1.2.  My egfr has been going down.  My primary sent me for an ultrasound of my remaining kidney, which came back fine.  I am not diabetic and do not have high blood pressure.  I stay h...

    May 23 at 10:53 PM view discussion
    • jane99 has created a new message board discussion

      Hi--it's been quite awhile since I have posted, years actually.  RCC stage 4 with retroperitoneal masses and vena cava resection.  No distant mets.  Have been in remission for about 7 years.  Was on votrient but had to quite 2 years ago because of cardiac complications.   Have been having some nerve type pain in my right hand (same side as rcc) but just wrote it off to arthritis, which I do h...

      March 22 at 11:42 PM view discussion
      • jane99 has replied to a post on the message board

        My son asked my oncologist about interleukin a few years ago and we were told it would be too much for me. You must be superwoman! Actually I have been on sutent, affinitor, torisel (I think that is what it was---seems like ancient history). Nothing worked for me until the votrient. I had grade 4 cancer and it was very aggressive. I will check out your blog. Thanks.

        August 13, 2016 view post
        • jane99 has replied to a post on the message board

          Wow. Interleukin is really tough from what I hear. Glad it has worked for you. Do you have ct scans regularly? I have them every 6 months or so.  I am taking 400 mg of votrient a day; I think 800 mg daily is the usual dose. That was what I was supposed to take but I got the dose wrong and by the time I figured it out I was in remission, so my oncologist said to keep it at the lower dose. I am a small person anyw...

          August 13, 2016 view post
          • jane99 has replied to a post on the message board

            I did have clear cell with localized mets to the lymph nodes and vena cava. Had three surgeries, the last one in Sept of 2011.  Would like to go off votrient at some point but since I have had two recurrences in the past, my oncologist feels it is better to stay on it to keep anything new from cropping up. Thank you for your response. How are you doing?

            August 10, 2016 view post
            • jane99 has created a new message board discussion

              Has anyone had any cardiac side effects from votrient? I have been on votrient for almost 5 years and it has been very effective at keeping me in remission. At the end of June I had a mild heart attack that was caused by a cardiac spasm. My cardiologist said he sometimes sees these spasms in chemo patients. I had never had any cardiac issues before, although when they did the cardiac cath they found a 50% blockage in...

              August 09, 2016 view discussion
              • jane99 has replied to a post on the message board

                I have tried taking it both in the morning and at night to see if there is a difference. I prefer to take mine in the evening. Everyone is different but the idea of sleeping through the effects works for me. Good luck.

                May 18, 2016 view post
                • jane99 has created a new message board discussion

                  My primary doctor wants me to take a cholesterol lowering med. He suggested Lipitor. I looked it up and it looks like it is hard on the kidneys. Plus it causes gastro issues which I have enough of because of my votrient. Can anyone recommend an alternative, or has lipitor worked for you. Thanks.

                  May 18, 2016 view discussion
                  • jane99 has replied to a post on the message board

                    I am sorry to hear about both of your battles with rcc. I haven't been on opdivo, so I am no help there. Votrient has worked for me for the last few years. But as far as the pain goes, I have had pain on the opposide side of the tumor before and ct scans have shown nothing. Now after three surgeries I have some pain in various spots which are from scar tissue hopefully. I know how scary it is when pain pops up. I am ...

                    January 03, 2016 view post
                    • jane99 has replied to a post on the message board

                      The best thing would be to ask your doctor. I find myself that I do better taking them at night.

                      January 03, 2016 view post
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                      About jane99

                      Patient
                      Renal Cell Cancer

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