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Luvingwife's Recent CancerCompass Activity

  • Luvingwife has replied to a post on the message board

    Hd8906: I don't know what made me check this message board today, but now I am so glad I did.  Please, Please, Please do not assume the worst and do not assume that every case of GBM will progress like what you read about online.  The statistics you are reading include OLD data, with patients who did not have the benefit of the newest treatments and technology.  I have learned so much since m...

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

      glad to see your good news!

      November 22, 2014 view post
      • Luvingwife has replied to a post on the message board

        Dear Dodger BlueMy husband had very few problems with the Radx and Temodar. The temodar caused very bad breath, some constipation (that was treated with otc Senecot). The radx caused some hair loss in the small area where the radx was pointed, and irritation, but it was not painful and the hair grew back. He was fatigued, but not so bad that it was unable to deal with. He continued to work through the treatments...

        November 22, 2014 view post
        • Luvingwife has replied to a post on the message board

          Dear BRC233: I have been on this and other message board for years, learning about GBM, and I have heard of several GBM patients who were told "inoperable" and then got a second opinion.  Sometimes the second opinion was that surgery WAS an option. I hope your huband is being treated at a brain tumor center. Good luck!  

          November 10, 2014 view post
          • Luvingwife has replied to a post on the message board

            Dear Ek999 So sorry that you and your family are having to deal with this disease.  I am the wife of a gbm patient (now 70 yo) and have seen behavior similar to what you described. Some of your father's symptoms- the sleeplessness, the agitation, the aggressive and rude behavior may be from steroids.  Some of the symptoms may be from brain damage in the particular location of the brain that controls inhibi...

            November 07, 2014 view post
            • 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, 2014 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, 2014 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, 2014 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, 2014 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, 2014 view post
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