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Dodgerblue's Recent CancerCompass Activity

  • Dodgerblue has replied to a post on the message board

      I know a 9 year gbm survivor who has chosen to stay on Temador for the last 9 years!  I know several suvivor's who have stayed on for years in fact.  A safety blanket of sorts I guess.  For me, I couldn't wait to stop taking poison, which it essentially is, although certainly has it's purposes.  I've been off all treatment for 3 years and remain recurrence free.  I also have no visible...

    Yesterday at 6:15 PM view post
    • Dodgerblue has replied to a post on the message board

      I'm terribly sorry to hear your story!  This is a very unpredictable disease.  A AA3 dx with IDH1 and resection, indicates a better prognosis, but clearly every case is very different.  I'm so sorry.  Stay strong for each other and her. Dodger

      March 10 at 5:17 PM view post
      • Dodgerblue has replied to a post on the message board

          What type of brain tumor did your husband have? Dodger

        March 06 at 2:27 PM view post
        • Dodgerblue has replied to a post on the message board

          It appears to be very similiar to what I recieved.  Focusing on tumor or tumor bed, while avoiding healthy brain tissue.  As for side effects.  There will a good bit of temporary hair loss, most if not all will grow back.  Fatigue will kick in after 2nd weak, but improves about 2 weeks after completion.  Scalp may get slightly irratated.  Short term memory goes to shit, but that also imp...

          March 02 at 3:02 PM view post
          • Dodgerblue has replied to a post on the message board

            Where do you live? Dodger

            February 28 at 2:02 PM view post
            • Dodgerblue has replied to a post on the message board

                I would suggest looking to see if there is a brain tumor support group in your area.  They aren't for everyone, but I think it's a great way to meet others who have been exactly where you and your husband are right now.  They are usually for suvivor's and caregivers.  There is a 10 year GBM survivor in my group.  Best of luck, Dodger

              February 27 at 2:19 PM view post
              • Dodgerblue has replied to a post on the message board

                Thank you for sharing Mack, we all love to hear stories of long term survivor's!  Four resections, your the man, keep up the fight! Dodger

                February 24 at 5:26 PM view post
                • Dodgerblue has replied to a post on the message board

                     Radiation approaches today are localized to the tumor or tumor cavity, avoiding dangerous amounts of radiation to healthy brain tissue.  Whole brain radiation is another story.  I would say my memory isn't what is was and not all my hair came back, however, my quality of life is still very good! Dodger

                  February 24 at 5:24 PM view post
                  • Dodgerblue has replied to a post on the message board

                    Generally, for other types of brain tumors, the word, "curative" isn't even used.  Some docters can have a doomsday presentation, I would be encouraged from what I have read.  Of course, the fear of recurrence is something we all deal with as it is a fact of life for brain cancer survivor's.  It is something you learn to live with and gets easier as time goes on.  I would suggest getting a 2nd opi...

                    February 24 at 5:18 PM view post
                    • Dodgerblue has replied to a post on the message board

                      From what I read, aggressive surgery is the standard treatment and it can be curative, unlike many other brain tumors.  What state do you live in?  Any brain tumor dx is overwhelming in the beginning, but from what I read, the outlook is encouraging. Dodger

                      February 23 at 2:55 PM view post
                      • zz4775

                        zz4775 hey dodger can you give me a call then Couldn't get my message through so trying this way.

                        February 23 at 5:48 PM
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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, 20,16,14.
                    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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