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ravirajagopalan's Recent CancerCompass Activity

  • ravirajagopalan has replied to a post on the message board

    Hi Tessa, my wife had three surgeries. Recovery from the first two was very good - the third left her with speech and balance problems. All of them were worth it. The last two were by Dr. John Yu at Cedar Sinai. Since Temodar did not work, please consult a major hospital (Duke, UCLA, Cedar Sinai, MD Anderson) and try to get on a good clinical trial after surgery. All you need is for one chemo or vaccine to work. It d...

    September 05, 2013 view post
    • ravirajagopalan has replied to a post on the message board

      Robin, I agree regarding lack of info initially. We were told the same thing: surgery ASAP. Realized only after surgery that for some vaccine trials tumor sample is needed and surgery needs to be done at the hospital. By the time we went to UCSF, lot of options were closed. Then did not realize ICT-107 did not need tumor sample till after radiation - too late. Tumor had recurred by the time we were ready with options...

      July 22, 2013 view post
      • ravirajagopalan has replied to a post on the message board

        Hi Nabil, CDX-110 (and ICT-107) do not require the patient's tumor sample. So you don't have to worry about paraffin etc.  

        July 10, 2013 view post
        • ravirajagopalan has replied to a post on the message board

          Hi Nabil, having surgery at e center offering the trial for DCVAX is a requirement - so your mom is not eligible now. There are two other vaccine trials that you can look in to - CDX-110 and ICT-107. Good luck.

          July 09, 2013 view post
          • ravirajagopalan has replied to a post on the message board

            Me and my wife had wonderful experience at Cedar Sinai. The Neurosurgeon, Dr. Joh Yu, is one f the best in his field and is extremely patient and very caring. I would email several questions before and after surgery - often on weekends - and would receive. Reply in a very short time. The NO is great as well - returns emails in a few hours. And the staff were great. Dr. Santosh Kesari, NO at UCSD, was extremely hel...

            June 07, 2013 view post
            • ravirajagopalan has replied to a post on the message board

              Hi there, regarding trials for vaccines: there are three vaccines that show promise. Dendritic cell vaccine, CDX-110 (also called Rindopepimut) and ICT-107. Do get data on these by writing to hospitals that have them just in case.   Good luck, Ravi

              June 06, 2013 view post
              • ravirajagopalan has replied to a post on the message board

                Hi Distance runner, thanks for your post. I too follow your posts quite closely. Sorry for all that has happened - the worst thing must be seeing your wife alive but no longer your wife. Agree with you that beyond a certain point, just surviving makes no sense if you have no cognitive skills.   Good luck.

                June 05, 2013 view post
                • ravirajagopalan has replied to a post on the message board

                  Hi Robin, understand your frustrations. Scary part is I started reading your post without looking at who wrote it and half way through said: That is Robin... :)   I agree with you completely. Most NOs seem to be familiar only with trials at their own facility and know little or nothing about other trials. Either that or they do not want to discuss. There has been one exception in my case - but mostly that is t...

                  May 22, 2013 view post
                  • ravirajagopalan has replied to a post on the message board

                    It is probably worthwhile trying a clinical trial.I have seen vaccine trials where they give Avastin concurrently - that might be the safest option. We opted for a dendritic cell vaccine trial - tumor recurred. Mymy wife is on Avastin now after surgery.

                    May 16, 2013 view post
                    • ravirajagopalan has replied to a post on the message board

                      In my case, my wife isoOn my medical insurance - so cannot afford to do that. She has been a stay at home wife and mom - so does not have enough years of work to get social security disability. Si I think I have to keep my job.... Staying at home is not really an option.

                      April 12, 2013 view post
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                      About ravirajagopalan

                      Brain Cancer
                      Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Hormone Therapy, Radiation, Spiritual Support, Supplements

                      My wife was diagnosed with GBM this past September. She had a siezure on September 15. MRI showed growth in the brain. Surgery was on Sept 27. She has undergone her round of radiation + chemo and is beginning her round of adjuvunct Temador. Hopefully the treatment will be effective.

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