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KB-Austin's Recent CancerCompass Activity

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

                  Buster - so sorry to here this.  We are still living each day MRI to MRI.  I'm curious if they change the diagnosis from stage 2 to something else when things "light up".  We have not been eligible for any clinical trials because most of those trials are for stage 4.  Hoping you respond to the chemo and that the side effects are managable.   Blessings.  KB

                  December 29 at 4:33 PM view post
                  • KB-Austin has replied to a post on the message board

                    How were your MRI results?   Mike's continue to show some (very slight) growth - but the doctor's cannot really discern if it is tumor progression or the impact of the radiation.  So they are calling it "stable".  Now that chemo and and radiation are done we are looking at clinical trials.  There is an immunotherapy trial at the University Hospital in San Francisco that looks interesting and ...

                    November 04 at 10:05 PM view post
                    • KB-Austin has replied to a post on the message board

                      Good to hear from you!  I have tried 3 times to post, and somehow keep deleting it.  So if you end up with 3 responses... sorry!  Mike stopped the chemo after the 5th round because his blood counts fell pretty low.  The impact of chemo with MGMT unmethylated is pretty uncertain anyhow.  He tolerated it well, took ondansetron 30 minutes prior to each session and didn't have any nausea.  W...

                      October 19 at 1:49 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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