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Dodgerblue's Recent CancerCompass Activity

  • 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

    Yesterday 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.

      Yesterday at 5:48 PM
  • Dodgerblue has replied to a post on the message board

      Well, I've never heard of this one, but I just read up on it.  Is she having surgery?  It seems radiation and chemotherapy isn's commonly used as with other types of brain tumors.  With surgery as the main treatment, you will want to get as much of tumor resected as possible.  I would recommend getting a 2nd opinion from a top notch brain cancer center and perhaps traveling to get surgery t...

    Wednesday at 3:22 PM view post
    • Dodgerblue has replied to a post on the message board

      Has she recieved any type of treatment yet or they just watching it? Dodger

      February 17 at 1:28 PM view post
      • zz4775

        zz4775 Dodgerblue, not sure why messages were blank but could we talk this week on phone? My number is 717-968-4037.

        February 18 at 3:31 PM
    • Dodgerblue has replied to a post on the message board

      definitely talk to the social worker!  Surprised they didn't suggest a full labotomy, unbelieveable.   Dodger

      February 09 at 9:47 PM view post
      • Dodgerblue has replied to a post on the message board

        I would contact the hospital, they should have someone you can talk to that may be able to help.  That's totally ridiculous.  I haven't had any issues.  Have you talked to anyone at the insurance company?  I would go way up the ladder on this, sqeaky wheel gets the grease!  Please let us know their reasoning on this.  Best of luck, Dodger

        February 09 at 2:04 PM view post
        • Dodgerblue has replied to a post on the message board

          I had my surgery at John Hopkins and they tested my tissue samples for initial dx.  However, I go to Dana, Dr. Wen for my NO.  They have a tissue database, so after getting my tissue samples from JH, it was tested again.  I as far as I know they test for the 4 biomarkers that are widely tested for, never heard of getting entire genome sequenced. Dodger

          February 08 at 1:52 PM view post
          • Dodgerblue has replied to a post on the message board

              Marijuana has been shown to be helpful in controlling nausea, increasing appetite, helping sleep, reducing pain and in petri dishes, has even shown to have some interesting effects on cancer cells.  Haven't seen anything about it helping fatigue though.  It's thoroughly understudied due to negative stigma that's atttached to it. Dodger

            February 07 at 1:05 PM view post
            • Dodgerblue has replied to a post on the message board

                I think this is a very common experience for almost all brain cancer survivor's!  Though usually experienced when due to stop Temador treatment.  I didn't experience it, I couldn't wait to stop taking what is essentially poison, but I know other survivors who stayed on Temador for many years because of what your talking about.  My view is if there is no statistical evidence that continuing treat...

              February 05 at 3:47 PM view post
              • Dodgerblue has replied to a post on the message board

                  First off, 23 year survivor is very inspiring for many on this site!  Thank you for sharing that.  As for long term fatigue, which is very real and I think more related to radiation treatment more than anything else, I find the more active I am the less fatigued I am.  I know, fatigued, excercise and activity is the last thing you want to do, but it really helps me.  Not sure is if this is ...

                February 05 at 3:37 PM view post
                • Dodgerblue has replied to a post on the message board

                     Did he recieve radiation during his treatment 25 years ago?  I had a good friend who had a brain tumor at age 9 or 10, in his mid thirties another tumor developed that was attributed to his radition as a child.   Dodger

                  February 02 at 2:19 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, 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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