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KB-Austin's Recent CancerCompass Activity

  • 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...

    Yesterday 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
          • 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
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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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