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Luvingwife's Recent CancerCompass Activity

  • Luvingwife has replied to a post on the message board

    Are your sure it's the Temodar? My dh had a terrible rash and we discovered it was a reaction to dilantin which he had been taking for seizure control. Surprisiong because he had been on it for over 6 months when he had the reaction. Good luck!

    September 10 at 7:50 PM view post
    • Luvingwife has replied to a post on the message board

      Ariel My husband (now 69 yo, diagx GBM May 2004, recurrence in 2006) has had several treatments, including BCNU.  The BCNU wa not effective. Other treatements after the standard surgery, Temodar and Radx included: CPT11 (irinitican) with Avastin, BCNU with Avastin, Carboplatin, and Tarceva. His NO attributes his survival to the Tarceva, which he has been taking since March 2008. It is prescribed off label, it i...

      August 03 at 9:16 PM view post
      • Luvingwife has replied to a post on the message board

        My DH had terrible constipation when he was on Temodar. We used Senecot otc. It solved the problem.

        August 02 at 2:11 PM view post
        • Luvingwife has replied to a post on the message board

          All: What a tough topic! I want to respectfully put in my 2 cents. I am the caregiver wife to Hubby with GBM diagnosed in 2004. We were very grateful that the docs told us both the statistics and were very direct.  At the first recurrence in 2006 we were told to get the final affairs in  order; made some financial decisions based on the prognosis. He had already outlived his original prognosis. Well, ...

          August 02 at 2:09 PM view post
          • Luvingwife has replied to a post on the message board

            RobineK62 I don't get on the web as often as I used to, but I want to reply to your post thinking it might give you a more positive scenario to consider. My DH was digx w/ GBM in 2004 in left frontal lobe. He had the standard surgery, radx, 6 months temodar and a radx "boost" with IMRT.  He worked throughout all the treatments and retired in 2008. Now 69 yo. He has some deficits, is forgetful and impulsive...

            April 01 at 5:06 PM view post
            • Luvingwife has replied to a post on the message board

              Bill, Yes, my husband had this treatment and it was very successful after only 2 months; then disease was 'stable.' He was on this treatment after recurrence in 2006; had 20 infusions every 2 weeks until May 2007. He used Emend the day of treatment and 2 days following for anti-nausea, also ativan the day of treatment for anticipatory nausea.  The CPT 11 was the toughest chemo he has been on, but he contin...

              January 07 at 3:51 AM view post
              • Luvingwife has replied to a post on the message board

                Dear Snowdr: Sorry that you and hubs are new to this group, but you will find some good information here. A good resource for info iswww.virtualtrials.com  there is a good article 'for the newly diagnosed', links to some survivor stories and a great, but very long article written and updated by Dr. Ben Willliams, a long term GBM survivor. His article discusses many treatments, supplements and the side effe...

                January 05 at 4:36 PM view post
                • Luvingwife has replied to a post on the message board

                  Lola1: We know that awful 'deer in the headlights' feeling with this diagnosis. Yes, to answer your question about your mom being up and around.  So much depends on the location of the tumor/surgery site.   My husband was up and about after surgery, back to work within a few days.  He worked all through his radiation and 6 months of Temodar.  Learn all you can about this disease an...

                  January 01 at 3:37 PM view post
                  • Luvingwife has replied to a post on the message board

                    There is an article about Toca511 at this web site www.virtualtrials.com   http://www.virtualtrials.com/tocagen/   good luck,  

                    December 27 at 7:15 PM view post
                    • Luvingwife has replied to a post on the message board

                      KimmieAnne, Thanks for the reply.  Hubby's neuro onc attributes his 'no disease progression' to the Tarceva, although I guess we will never really know if that is the reason unless he stopped taking it.  It is very expensive! Even the co-pay is hard for us. Currently it is covered by his medicare advantage policy, although it is an off-label use.  He is a veteran and I am going to look into seeing if ...

                      November 13 at 6:09 PM view post
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                      Brain Cancer

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