hpy2b's Recent CancerCompass Activity

  • hpy2b has replied to a post on the message board

    I'm glad you hear that you know it's not all doom and gloom! Attitude is everything, and both my neurosurgeon and oncologist said as much to me early on after being diagnosed. There are people out there beating this, pushing it back anyway and the science being done now gives me hope too.  Take care and keep up the good fight :) 

    April 21 at 2:29 AM view post
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      hpy2b has updated their status

      12 Months of Temodar is done! My last MRI on Apr. 16, 2015 was all clear. I will have MRI's every two months for a while. I am so happy to be done with it.

      April 21 at 2:24 AM
      • hpy2b has updated their status

        Either way, I think throwing everything at it is the best bet I have, and the immunology is non toxic. I now have three grandbabies! Excuse any typos, that's a left over problem I have from the surgery etc. I don't spend much time on the computer because the vision is impacted as well. Stay positive :)

        February 12 at 6:13 PM
        • hpy2b has updated their status

          After lots of therapy, I am doing much better now. I am in the middle of round 10 of my chemo (temodar) and have 2 more cycles to go. My MRI's are all clear. I'm looking into a clinical trial (immunology) because I'd love nothing better than to work with people actively trying to cure this disease. And I know that if I've had one recurrence, I could have another...or the Temodar may not work for me next time.

          February 12 at 6:10 PM
          • hpy2b has updated their status

            Update: I had a recurrence in April 2014, followed by chemotherapy. I was very impaired after surgery. I had lots of cognitive issues: couldn't read, write, tell time, recall the names of, well, almost anything really. My speech and vision were impacted as well. It was a really awful time for me. I was in the ICU again in June, 5 seizures, and the cycle started again with all the cognitive problems.

            February 12 at 6:06 PM
            • hpy2b has updated their status

              My last brain MRI was a couple of weeks ago, all clear, and today I turned 50 and had the distinct pleasure of having my 2 year old grandson sing the happy birthday song to me. I couldn't ask for a better birthday gift :)

              June 06, 2013
              • hpy2b has replied to a post on the message board

                I agree with you Randy, and I'm happy to hear about the clear MRI's.   

                February 13, 2013 view post
                • hpy2b has replied to a post on the message board

                  Thank you Annie.  I wish the best for you, your husband and his fight.

                  September 13, 2012 view post
                  • hpy2b has replied to a post on the message board

                    I'm so sorry to hear about your sisters as well.  Has anyone asked your family to participate in a study to determine how three of them were stricken with this?  It seems very unusual. I hope for the best for your sister.

                    September 10, 2012 view post
                    • hpy2b has created a new message board discussion

                      This month I celebrate my 5 year survival anniversary.  I  resisted posting before because it meant putting more energy into thinking about cancer.  And being on the computer is difficult after being diagnosed with a seizure disorder.  Survivors will tell you (or not) that there is some guilt associated with being here, when others with GBM have lost their battles. So in some w...

                      September 03, 2012 view discussion
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                      About hpy2b

                      Patient, Survivor
                      Brain Cancer
                      Acupuncture, Alternative Treatments, Cancer Nutrition, Clinical Trials and Research, Diet, Emotional Support, Genetics, Lifestyle, Massage Therapy, Naturopathic Medicine, Recipes, Supplements, After Treatment

                      I was diagnosed in 2007 with Stage IV brain cancer. Glioblastoma Multiforme. I had surgery, radiation and chemotherapy (Temodar). And 5 years later, I'm very happy to be alive. I have a seizure disorder, thanks to the tumor's locaton, memory issues which drive me nuts at times, but living a quiet life suits me and I think it's allowed me to focus on my health and well-being and has contributed to the joyful fact that I am outliving the median survival time for GBM. My neurosurgeon was very kind when he gave me the news, he also told me the median survival rate at the time was 2.5 years and told me "GBM always comes back." That quote echos in my brain every day and every day I push it away and say, "not today" and get on with living my life. My MRI's are sheduled at 6 months apart. I'm used to them now and can fall sleep during the scan, but I still get nervous a few days before I go in and start playing the "what if" game. What if this one has a spot? What if this means I need another surgery. So far, so good. I try to eat healthy food, take a few supplements, Tai Chi class twice a week, get enough sleep and keep putting one foot in front of the other to keep moving forward.

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