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Dodgerblue's Recent CancerCompass Activity

  • Dodgerblue has created a new message board discussion

    Hello all,   I just wanted to share my trail journal link as I'm heading back out on the Appalachian Trial to hike the remaining 689 miles I didn't complete last year.  Hope you enjoy, see you in August. Dodger http://www.trailjournals.com/freemanben/

    June 18 at 11:08 AM view discussion
    • Dodgerblue has replied to a post on the message board

      If your referring to monthly dosage level opposed to daily level during radiation, I only need to increase my anti nausea, as I took as little as possible.  About  two days in I would lose my appetite for about a week.  Otherwise no issues. dodger

      June 16 at 4:18 PM view post
      • Dodgerblue has replied to a post on the message board

        Many people survive longer than a year!  I know a GBM survivor that is 11 years out and another on this site is a 20 year survivor.  No one's path is pre-determined, and everyone's journey is different when it comes to this disease.  Don't give up hope. Dodger

        June 14 at 1:40 PM view post
        • Dodgerblue has replied to a post on the message board

          Thanks for sharing Maria, I'm very sorry for your loss.  My wife loss her Mom to ovarian cancer almost ten years ago and we all still miss her very much.  It sounds like you had a very loving relationship with him.  That is a blessing.   Dodger

          June 01 at 4:10 PM view post
          • Dodgerblue has replied to a post on the message board

            I would ask the doctor why?  It could be his blood work is showing signs his body needs a break from treatment, which if is the case, a break is probably a good idea. Dodger

            June 01 at 4:03 PM view post
            • Dodgerblue has replied to a post on the message board

                I would directly ask him about clinical trials.  I'm assuming he has or is going standard treatment protocol currently.  Clinical trials will be a real option, when/if he has a recurrence.  Until he has a recurrence, he won't be eligible.  If his NO seems unaware of clinical trial options, he probably needs to seek treatment at a major brain cancer treatment hospital. Hope that's helpful, ...

              June 01 at 4:01 PM view post
              • Dodgerblue has replied to a post on the message board

                  I will certainly agree that long term survivorship is grossly understudied and reported on!!!  As is the study of diet and lifestyle change!  The reason is because there is no money to make on such findings.  With that being said, I know many survivors who totally changed their diets and lifestyles. While it certainly lead to a better quality of life, it didn't prevent disease recurrence.  ...

                May 26 at 1:41 PM view post
                • Dodgerblue has replied to a post on the message board

                  I share that thought myself at times as I just passed 3.5 years out recurrence free and see others struggling with their disease.  I, unfortunately, don't have a secret to share as to why I've done well.  It's hard to grasp that we may just be lucky, but I don't know what else to attribute it to.  I also realize that my luck very well could run out.  So I just try to stay grateful for everyday of ...

                  May 24 at 1:31 PM view post
                  • Dodgerblue has replied to a post on the message board

                    Great news!  Getting a 2nd or 3rd opinion on surgical options is always a very good idea! Dodger

                    May 24 at 1:23 PM view post
                    • Dodgerblue has replied to a post on the message board

                         It's very common for symptoms to get worse during radiation and the weeks following it's completion, as it causes swelling in area being treated.  You should start seeing an improvement 2-3 weeks after radiation is over.  His speech may never be what it was though.  I know many survivor's with similiar issue.  Certainly can be frustrating when one's thoughts are moving faster than the...

                      May 24 at 1:20 PM view post
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                      About Dodgerblue

                      Patient, Survivor
                      Brain Cancer
                      Clinical Trials and Research, Acupuncture, Alternative Treatments, Cancer Nutrition, Cancer Treatments, Diet, Massage Therapy, Naturopathic Medicine, Recipes, Supplements

                      I'm a 41 year old man, married, 3 sons, 21,16,15.
                      12/8/13- dx with brain tumor thought to be Grade 2 Astrocytoma.

                      1/8/14-Full resection of small chicken egg sized tumor from right parietal lobe @ John's Hopkins

                      1/23/14-Pathology results indicate Grade 3 astrocytoma. I'm negative for IDH1 protein, MGMT Unmethylated, and I do not have the 1p19p codeletion.

                      2/13/14-Imrt 5 field radiation 5 day/week and daily temador begin.

                      4/1/14-6 weeks of radiation and Temador finish.

                      4/24/14-first MRI in 105 days...ALL CLEAR!

                      4/28/14- first monthly cycle of Temador @ 320mg

                      6/1/14- half marathon 1:55:30

                      6/2/14- second monthly cycle of Temador @410 mg, which sucked!

                      6/24/14- Another clean MRI!

                      7/4/14- third monthly cycle of temador @400 mg, managed better this month than last.

                      8/2,3- PMC weekend! Rode hard for 145 miles before a violent tire blowout and crash, but no serious injuries to report. Raised over 7800$ for adult brain tumor research :)

                      8/8/14- finished 4th monthly cycle of Temador.

                      10/11/14-Hartford half marathon run in 1:50:37

                      10/12/14 - starting 6th and final cycle of Temador.

                      10/30/14 - another clear MRI, informed my original pathlogy report had false negative test for IDH1 muatation. I do have the mutation, which is a good thing.

                      11/5/15 - Another clear MRI, coming up on 2 years of survivorship!

                      3/16 MRI's continue to look good.

                      4/7/16 Start thru hike of appalachian trail!

                      7/12 After 1498 miles hiked, I've gotten what I needed from this adventure. I'm going home to heal up the body.

                      7/28/16-Clear MRI :)

                      11/8/16-Clear MRI

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