Loading...

luvingwife's Recent CancerCompass Activity

  • Luvingwife has replied to a post on the message board

    Dear wagthecaregiver: I don't get to this board often any more but I am so glad to hear your story, and wanted to share ours. My husband is now 12+ years post diagnosis with Left frontal GBM. His presenting sympton was a siezure, then 59 years old.  He had successful surgery, standard Radx and temodar. He had recurrence in 2006, the tumor came back in both frontal lobes and surgery was not an option.&...

    October 24, 2016 view post
    • Luvingwife has replied to a post on the message board

      Dear Fightergi, I don't come to this site much anymore, but when I do and see a post like yours I remember how frightening those first few months were.  My husband was diagnosed in May 2004 with GBM in his left frontal lobe and is one of the long term survivors 12 years later. His surgery was also successful, and he had the standard Radx and Temodar. There were 2 recurrences. There is no evidence of tumor growt...

      August 11, 2016 view post
      • Luvingwife has replied to a post on the message board

        Dear Ezed54: Well, some days I don't feel very fortunate but I do have some good information to share and doing this will remind me that I am, in fact, forturnate. My husband is an 11 year GBM survivor. He was diagnosed in May 2004, gbm left frontal lobe. He had resection, standard Radx & Temodar (6 months), then a focused Radx Boost. Recurrence in 2006. Treatments included CPT11 with Avastin, BCNU w/ avastin, a...

        March 09, 2016 view post
        • Luvingwife has replied to a post on the message board

          Dear Mary: I remember how it felt for me when my husband and I first learned of his diagnosis and then the prognosis. Deer in the headlights! Frightened! we were told in May 2004 his prognoisis was good, maybe as good as 2 years! because he had some good things going for his case. But that was more than 11 years ago and my husband is still here. He has some cognitive deficits and seems older than his ...

          February 25, 2016 view post
          • 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...

            February 09, 2016 view post
            • Luvingwife has replied to a post on the message board

              glad to see your good news!

              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...

                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!  

                  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...

                    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!

                      view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About luvingwife

                      Caregiver
                      Brain Cancer

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.