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KB-Austin's Recent CancerCompass Activity

  • KB-Austin has replied to a post on the message board

    Yes, they did genetic testing once on the biopsy and will do again on the tumor.  He did do temodor weekly during the first round of treatment in 2018 along with radiation.  Our NO says if the lomustine doesn't work we will try daily temodor with optune.  I'm so glad to hear from you!

    June 07 at 10:09 PM view post
    • KB-Austin has replied to a post on the message board

      Been awhile since I sent an update.  Mike's tumor started to grow in March/April.  We waited until after our 20 year wedding anniversary and a trip to the Turks and Caicos with 50 friends/family to do the surgery.  SUCH a wonderful time!  They did surgery 2 weeks ago (29 staples in his head) - and he is doing fantastic, but unfortunately the biopsy came back as GBM.  Not surprised.  We'v...

      June 07 at 1:59 PM view post
      • KB-Austin has replied to a post on the message board

        I know this post is old, and don't know the status today.  But your message gives me some hope.  My husband is also IDH wildtype, unmethylated, age 59.  He was diagnosed 18 months ago.  We have done TMZ and radiation and 1 surgery, and are about to start with CCUU because the tumor is growing.  There still aren't many options for treatment, so they just - as you said - continue to try differe...

        June 07 at 1:40 PM view post
        • KB-Austin has replied to a post on the message board

          Buster, hang in there - hope that the temodor does it's thing.  You remain in my thoughts and prayers. Heather, I heard about doing the keto diet - glad your doctor recommended he do that.  I tried for a week with Mike but it wasn't for him.  He's not a big carb eater, but wasn't willing to completely give up pasta or an occasional bowl of ice cream.  LOL.  I get it. After 14 months on ...

          March 15 at 1:38 PM view post
          • KB-Austin has replied to a post on the message board

            I'm so sorry.  You have given us all much hope with the long time you've been before recurrance.  My brother-in-law was diagnosed with GBM and he survived over 5 years.  He did not respond to temozolomide when his cancer returned - but he did respond to Avastin (bevacizumab), and he had a second surgery for partial removal of the tumor growth.    Sending love and prayers, KB  

            February 28 at 9:57 PM view post
            • KB-Austin has replied to a post on the message board

              Buster, how are you doing? Heather - TX has a 3 month rule on seizures.  Mike has only had one (small) seizure since his treatment and it was because he forgot to take Keppra one morning.  It was not like the first one (a grand mal) - he just had some pretty crazy speech issues, and could not form words ... one of the locations of his tumor is in the speech center of his brain.  So we are careful, but...

              February 25 at 12:44 AM view post
              • KB-Austin has changed their profile photo
                February 16 at 4:53 PM
                • KB-Austin has replied to a post on the message board

                  Hi HK - sorry to hear about your husband.  Mike and I still have wine with dinner, and he has the occasional beer.  Our doctor said to be careful with alcohol so we cut out hard liquor, which does impact him more than it used to.  The genetic testing may or may not be covered by your insurance.  Some day it will be used to direct personalized care, and to identify possible new treatments. Right no...

                  February 13 at 4:00 PM view post
                  • KB-Austin has replied to a post on the message board

                    I believe that the Suz222 was the one whose son did the clinical trials.  My husband (58) has a diffuse, multi focal, midline glioma, biopsed as stage 2 but with aggressive genetic markets.  Which makes it pretty messy for trials.  Appreciate your post - I've been reaching out to many women who are caring for loved ones with cancer just to hear their stories.  Everyone mentions music, reading, and...

                    February 01 at 7:27 PM view post
                    • KB-Austin has replied to a post on the message board

                      Mike's next scan is end of month 2.  He only finished 5 chemo cycles and then stopped since his blood counts were not good. At our neuro-oncologists recommendation I tried to get Mike into this trial which is along the lines of immunotherapy treatment:clinicaltrials.gov/ct2/show/NCT02924038 Long story short, we did not qualify for it.  But you might want to check it out.  I'm still looking around, and...

                      January 15 at 6:48 PM view post
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                      About KB-Austin

                      Caregiver
                      Brain Cancer
                      Alternative Treatments, Cancer Diagnosis, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Radiation, Side Effects

                      Married to the love of my life for 20 years. Positive attitude, love, laughter and family/friends keep happy and hopeful.

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