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KB-Austin's Recent CancerCompass Activity

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

    Found my husband in the same condition in January of this year.  Diagnosis was also a grade 2 glioma, no resection possible due to tumors (multiple) locations, biomarkers not encouraging, mgmt unmethylated so we don't even know if the chemo is having an impact.  We've almost completed the Stupp protocol, and will soon move into "wait and watch" phase of this thing.  That said, this entire experience ha...

    August 29 at 9:16 PM view post
    • KB-Austin has replied to a post on the message board

      Found my husband in the same condition in January of this year.  Diagnosis was also a grade 2 glioma, no resection possible due to tumors (multiple) locations, biomarkers not encouraging, mgmt unmethylated so we don't even know if the chemo is having an impact.  We've almost completed the Stupp protocol, and will soon move into "wait and watch" phase of this thing.  That said, this entire experience ha...

      August 29 at 9:12 PM view post
      • KB-Austin has replied to a post on the message board

        Mike is doing really well, thanks for checking in.  On his 5th round of chemo this week, then 3 weeks off, and does his 6th and hopefully final round in September.  He has been taking a small dose of steroids on chemo weeks to help with fatigue and it has done wonders.  His next MRI in October will help determine our future course of action.  She believes in wait and watch, so long as everything i...

        August 29 at 8:34 PM view post
        • KB-Austin has replied to a post on the message board

          My husband (58) has a Stage 2 Glioma, very diffuse.  He had the same radiation treatment but in 3 locations.  He was perfectly fine during the radition - but then, a few weeks later (and for about 2 months) he was very very foggy. We are now 4 months out and it is aworldof difference.  Radiation has a cumulative effect, and I think that it just takes time for the brain to recover.  You might ask y...

          August 02 at 6:34 PM view post
          • KB-Austin has replied to a post on the message board

            Wow!  Encouraged that you have not had any issue since 2011. I worry so much about the IDH wildtype.  Are they going to re-classify the tumor?  Mike doesn't qualify for any trials because he is a stage 2.   But we keep checking.  Mike is doing great right now.  So we are grateful. 

            July 21 at 4:35 AM view post
            • KB-Austin has replied to a post on the message board

              Yeah, Mike's tumor is in his thalamus and 2 other locations, so too tricky to operate.  He finished up his 6 weeks of radiation + TMZ, and is now doing 6 months of TMZ- 5 days on and 23 days off.  He tolerated the chemo/radiation very well.  Starting to feel some of the chemo side effetcts, but it is managable - mostly tired and a little bit nauseaous.   Good luck to you on your treatments.&n...

              May 24 at 8:13 PM view post
              • KB-Austin has replied to a post on the message board

                Good luck all on the scans!  I remember it well - my sister's husband had GBM and kept it at bay for over 5 years.  They did scans every month, held their breath, and breathed a sigh of relief (almost) every time.  You're right about learning to laugh, to love and live one day at a time.  Mike is fishing right now, with his buddies, in the Florida Keys - we've figured out that the 3rd week after c...

                May 17 at 3:36 PM view post
                • KB-Austin has replied to a post on the message board

                  That is fantastic news!  Mike's tumor is (supposedly) not operable although we may get another opinion.  So glad to hear about your son.  Mike's son also has cancer - t-cell lymphoma - and just underwent stem cell transplant.  He came through it and also has the best attitude in the world.  Hopefully he will be cancer free as a result.  

                  May 16 at 8:20 PM view post
                  • KB-Austin has replied to a post on the message board

                    Checking in to see how you are dong Keithge and Suz222.  Mike completed his radiation and chemo and is now doing just chemo even though he is MGMT unmethylated.  Mike is  Diffuse Astrocytoma, Stage 2, IDH Wildtype, MGMT Unmethylated, EFGR Amplified, PK53 Mutated.  There are so many things that they still don't know about these things but they are learning more and more each day.  Curious what...

                    May 16 at 6:18 PM view post
                    • KB-Austin has replied to a post on the message board

                      I'm grateful to hear that your sister has been 13 years since her original diagnosis of grade 2 diffuse astrocytoma - and so very sorry to hear of the recurrance.  My sister's husband survived GBM for 5 years.  Temador didn't work for him, Optune didn't work for him, but Avastin did.  I think it comes down to individual chemistry & genetics.  Impossibly, my husband was recently diagnosed with ...

                      April 05 at 6:19 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

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