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kat54's Recent CancerCompass Activity

  • kat54 has replied to a post on the message board

    get a second opinion!! get a second opinion! I was told the same thing in 1993.  my GBM was in the same location. I had t removed twice 93 and 95. How old is your mother in law?  there are many long term survivors .  check out a sit...

    March 18 at 3:16 PM view post
    • kat54 has replied to a post on the message board

      Emily my surgeon is in Lafayette,Louisiana. He was 32 for my 1st surgery and 34 for my second. he graduated from Harvard, I was his 100th patient. I still see him once a year to review my MRI. My pathology slides were reviewed at Brigham & Women's in Boston, MD Aderson and Johns Hopkins so there is no doubt if my tumor was GBMIV.  Kathleen

      February 26 at 12:33 AM view post
      • kat54 has replied to a post on the message board

        Hi Emily, I am sorry about your Dad.  I am a 22 year GBMIV survivor. I had 2 surgeries for my tumor located in right temporal lobe. ist surgery in 1993. In 1995 I had a recurrence and at that time the dr removed most of my right temporal lobe to aggressively remove tumor and margins.  I had had no further recurrence and very good quality of life. right after surgery it was rough but as I healed and swelling...

        February 25 at 4:58 PM view post
        • kat54 has replied to a post on the message board

          I am a 22 yr  gbmiv survivor and I too was only on decadron  and dilantin after surgery and soon weaned off the decadron. Iam sorry for the diagnosis but check out virtual trials.com. you will find many survivor stories and help about treatments and meds.   Prayers you find the right treatment combination.  Kathleen

          February 14 at 4:43 AM view post
          • kat54 has replied to a post on the message board

            Yes it happened in 1995 that is when most of mt temporal lobe was removed. kathleen

            February 12 at 7:39 PM view post
            • kat54 has replied to a post on the message board

              Paul , Sory you have joined this club.  I had radiation 22 years ago in my rt temporal/frontal lobe.  ended up having most of my temporal lobe removed. I  experienced extreme fatigue for a good while after not much else I can relate to the actual radiation treatments themselves no pain was involved. I never knew if the few problems (short term memory, confusion and left side weakness) I have experience...

              February 12 at 2:24 PM view post
              • kat54 has replied to a post on the message board

                Jennifer, I am sorry you are at this point.  Brainhospice.com has a pretty accurate timeline description for these times.  Prayers for strength for you and your family, Kathleen

                February 02 at 2:15 PM view post
                • kat54 has replied to a post on the message board

                  Sabrina I am sorry about your mom.  this month is my 22nd year survivor ship GBMIV. I was 38. My son was 15 when I was diagnosed. I know both sides of how you feel.  Click on my name to read my whole story and profile.  I wish the best for your mom and successful treatment.  I did everything wrong when it came to diet. I have no clue why I did so well.  Don't get too stuck on statistics.&nbs...

                  January 30 at 2:31 AM view post
                  • kat54 has replied to a post on the message board

                    congratulations on your success.  I am 22 years out GBMIV.  I have heard the pineal gland which regulates melitonin may have been damaged by radiation therefore we sleep alot.  it does get better wiith time. keep up the good fight kathleen

                    January 08 at 3:08 PM view post
                    • kat54 has replied to a post on the message board

                      I am sorry for your husband's diagnosis.  Try not to focus on prognosis statistics too much there are many long term survivors out here. I am 22 years this month. my full story is under my profile just click on my name to see it. also check out virtual trials.com for survivor stories.  Prayers for strength and courage for you both and successful treatment.  kathleen

                      January 06 at 5:44 AM view post
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                      About kat54

                      Survivor
                      Brain Cancer
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                      Tell everyone a little bit about yourselfDiagnosed Jan. 1993 at the age of 38 with GBMIV located in right temporal lobe had resection followed by radiation then stereotactic radiosurgery at Brigham & Women's. had recurrence in May 1995 followed by resection June 1, 1995. No further treatment. followed yearly by MRI

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