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Bulley1's Recent CancerCompass Activity

  • Bulley1 has created a new message board discussion

    I've been asked my opinion from an acquaintance whose father just finished his 12th Temodor treatment for GBM. His Oncologist offered him: 1. No treatment 2. Trial at Duke. 3. Trial at Sloan Kettering. My initial reaction why go on a trial if stable? I believe there is no evidence of tumor at this time. Any wisdom out there? Thanks in advance. Pam

    March 04 at 8:44 PM view discussion
    • Bulley1 has replied to a post on the message board

      Kim, So sorry for your husband's diagnosis!! My husband's cousin had melanoma diagnosed on his heel. It was stage 4 and had probably been there for quite sometime when. discomfort caused him to check his heel. He also had whole brain radiation followed by Temador when the melanoma metastasized to his brain. He did not have any issues with the radiation. A little nausea and the ever present constipation from Tem...

      March 04 at 8:32 PM view post
      • Bulley1 has replied to a post on the message board

        I want every day I can have with my husband........He agrees Pam

        October 24 at 4:49 PM view post
        • Bulley1 has replied to a post on the message board

          Funny how brain cancer seems everywhere following diagnosis........I know of a woman who was talked into treatment 2 years ago. She just attended a baby shower for her daughter. Another man who I know of is playing golf and fishing after one year. It's not all doom and gloom - attitude really helps. Praying for wisdom........

          September 06 at 3:15 AM view post
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            Sorry my last post was for Aaron13.......One would think I would know how to use this sight after 4 years. With wisdom of 4 years I concur with Donna - A caringbridge site saves a lot of phone calls and explanation. Friends and family can follow the six weeks of radiation/Temodor and the treatment that follows. The most valuable support we have found in our journey is knowing other brain tumor patients. I can'...

            September 06 at 2:55 AM view post
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              Wow! Make A Wish is the best. And to play 2 sports during treatment is beyond wonderful. May it never rear it's ugly head. Hope he has a wonderful college experience. Pam

              September 06 at 2:22 AM view post
              • Bulley1 has replied to a post on the message board

                Avastin certainly doesn't help many, but it can make a remarkable difference for those whose tumors respond to it. My husband's tumor has responded to Avastin/Carboplatin twice. He's been off treatment two MRI cycles this round - the most current MRI better than April's. I hope your husband is as blessed as mine. He was diagnosed 4 years ago tomorrow. It's been a roller coaster ride but we live life as large as ...

                September 06 at 2:03 AM view post
                • Bulley1 has replied to a post on the message board

                  Bishopron, We are still in the fight so can't relate personally to the hospice season you and your partner have entered. I remember when Dan was first diagnosed the sense of "deer in the headlights". It was so shocking, so unreal, so overwhelming. I'm guessing you are back in that season. Others have advised - tell your partner how much you love him. I hope other people offer suggestions on how to manage the ho...

                  August 07 at 7:35 PM view post
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                    Cookie, Swedish Medical Center - Dr Charles Cobb, Neurosurgeon; Dr Tara Benkers, Neuro-Oncologist. Seem to be well like by their patients. No personal experience as we are in San Diego. Pam

                    August 07 at 7:17 PM view post
                    • Bulley1 has replied to a post on the message board

                      It's heartbreaking that a 38 year old would need assisted living!! So sorry...........I've had 3 parents in asst living over the years. Have never personally seen a young person Pam

                      July 25 at 5:24 PM view post
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                      About Bulley1

                      Caregiver
                      Brain Cancer, Leukemia
                      Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research

                      I'm new on this site, though I've been a "voyeur" since discovering it in Oct following my husband's surgery for GBM on Sept 14, 2010. We're very grateful for this time to get our affairs in order. He has done well post surgery. Hoping and praying for more good MRI's. His 5/23 temodor has become a challenge keeping the pills down.

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