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ottoh's Recent CancerCompass Activity

  • ottoh has replied to a post on the message board

    there are many clinical trials out there and more are being added every day. My wife went to MD Anderson and was enrolled the CMV clinical trial and it has worke for her for the last year. I know that isn't long but we are feeling confident!! She also enrolled in the 5-ALA trial @ UCSF. I feel that surgery, and with Dr Burger doing it, played a big part in the glio not coming back. Here is the link to that trial. Rea...

    Tuesday at 2:16 AM view post
    • ottoh has replied to a post on the message board

      Sorry to hear you have this, but I like your attitude!! My wife has had two resections and is, for the last year glio free! After doing the standard treatment, chemo and radiation, I think we would have passed on the radiation, BUT, if you have a recurrance, most clinical trials will not admit you unless you have gone throught the standard protocol. That's an important thing to keep in mind. As far as the clinical tr...

      Tuesday at 1:53 AM view post
      • ottoh has replied to a post on the message board

        When my wife would get sick, she would take some CBD's or , I think it was called odonzintron, or something simalar. Ask you doctoer for something to help with that.

        June 19 at 3:12 PM view post
        • ottoh has replied to a post on the message board

          She is 60 and now that she's home, she's begaining to gain a little weight and exercising more!

          June 19 at 2:59 PM view post
          • ottoh has replied to a post on the message board

            There is always hope! My wife had surgery for her first tumor Dec. of 2015. Grew back to the same size in 6 months. That was a little hard to take. Long story short, we went from the east coast to the west coast trying to get into clinical trials. Had the second surgrey at UCSF with Dr Burger with the ALA clinical trial. Excellent job. Enrolled in the CMV clinical trial at MD Anderson where they took her T-cell and g...

            June 15 at 4:00 PM view post
            • ottoh has replied to a post on the message board

              I agree 100%!!! Our doc said the same to us. Been almost two years and still clear MRI's. No sugar, no acidic food and lots of O2. 

              April 19 at 9:28 PM view post
              • ottoh has replied to a post on the message board

                The CBD and THC oils she takes are golden in color and she does the black tar right before bed as it helps her sleep as well. On the dose, our researh and everyone we've talked to, says start withe a grain of rice size of the tar, and work your way up to as much as you can handle. On the oils, we did the same. She takes one full dropper full of each the TCH and CBD twice a day. When she wakes up and about an hour bef...

                April 15 at 5:27 PM view post
                • ottoh has replied to a post on the message board

                  We were very lucky to have had a friend who knew him and set us up to meet him. He was very nice to us and always got right back to us when we called his pager. I think he genuinely cares about his patients though some people have said he is a little gruff. ( I'm tallking about Dr. Henry Friedman) I have also heard many very good things about his son, Dr. Alan Friedman If you call Duke, they will help you with all o...

                  April 15 at 12:14 AM view post
                  • ottoh has replied to a post on the message board

                    Hi Jadorre. Yes, I think it is important wether or not he is MGMT methylated or not. If he is, there is a bettter chance the temador will work much better, other wise, it's my opinion, it really does not do much.My wife had surgrey the first time in Dec of 2015. The tumor came back to the same size, the size of a small orange, in 6 months. We had the second surgrey last August at UCSF. She was enrolled in a clinical ...

                    April 15 at 12:02 AM view post
                    • ottoh has replied to a post on the message board

                      I would get a second opinion on the operation. My wife has had two surgerys and she used to have to wear a diaper as well, but no longer needs one. It's a very tuff ordeal to go through, but there is always hope! Originally they gave my wife 6 to 8 months to live and after two surgerys, her MRI's are clean for the last 4 months. I would look into clinical trials that fit her condition. Good luck and God bless. 

                      December 22 at 2:06 AM view post
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