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rosegamel's Recent CancerCompass Activity

  • rosegamel has created a new message board discussion

    LETS HOPE MOST OF OUR FIGHTERS CAN MAKE IT THIS LONG..................   http://stemcell.stanford.edu/CD47/   EMILY

    May 02 at 6:39 AM view discussion
    • rosegamel has replied to a post on the message board

      THANK YOU FOR SHARING THIS....I HAD BEEN WONDERING TOO..SHE TOUCHED MY HEART AS WELL. SHE WAS A BRAVE FIGHTER...MAY SHE REST IN PEACE IN HEAVEN!! EMILY

      April 14 at 3:47 AM view post
      • rosegamel has created a new message board discussion

        Looking for some insight on these trials...trying to make a decision which to go with. Anyone familiar? Emily

        April 04 at 3:08 AM view discussion
        • rosegamel has replied to a post on the message board

          Robin- I read that about the PF00299804..being egfr pos. My husband is not. Although they feel his GBM has become more aggressive, your egfr status never changes. So I am not sure why he would even be considered for that trial. AHH...so many questions. Im thinking we"re going to go with dovitnib. I, too, hope there are others on here that have heard of these trials and give us some input.....new thread?? Emily

          April 04 at 3:06 AM view post
          • rosegamel has replied to a post on the message board

            We are also starting to run out of options. The avastin eliminates him from many trials. Also, he has had 3 progressions, most trials only allow for 2. We are going to cleveland clinic on April 18th...have 2 trials to choose from but both are only phase 2. One is dovitnib and the other one is PF-00299804. His rate of progresson has been so quick it scares me to think what he will be like by the 18th. Emily

            April 03 at 3:30 AM view post
            • rosegamel has replied to a post on the message board

              JON-I guess Im just shocked because he only got 4 cycles (about 2months) and it was doing great for the 2 tumors on his motor strip. This would have been something I would have expected after prolonged use. Very Disappointed!

              March 31 at 6:59 AM view post
              • rosegamel has created a new message board discussion

                I just wanted to throw this out there incase some of you dont know this. Avastin worked for my husband for 2 out of 3 tumors. Luckily, the 3rd tumor was operable while the ones responding to avastin were not. We stopped avastin in order to have surgery. Avastin was restarted 4 weeks ago and he has had 2 doses. We have seen rapid decline in function, headaches..etc. Turns out, after doing some research about stopping/...

                March 31 at 3:24 AM view discussion
                • rosegamel has replied to a post on the message board

                  thats what the doctor had said before too but he felt like it may be lead because it is bigger than most bb's..so who knows? My husband was also a welder so hard to tell what else he was exposed to!!

                  February 18 at 5:47 AM view post
                  • rosegamel has replied to a post on the message board

                    Oddly enough, my husband has had a BB stuck in his hand since he was 9 years old...the doctors never felt like it needed removed since it wasnt bothering anything and Im pretty sure it would be made of lead. He was diagnosed with GBM march 2011.

                    February 17 at 11:20 AM view post
                    • rosegamel has created a new message board discussion

                      Things have been chaotic to say the least. I dont get on here much anymore. I am now just going to commit my time to my husband's caring bridge site. It is just easier to keep everyone, including our family, updated on things going on with David. In short, avastin is not working on one of the tumors. He will have a 2nd tumor resection on 2-13-2013 to remove one of the tumors. The other 2 are inoperable but they...

                      February 07 at 11:29 AM view discussion
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                      About rosegamel

                      Caregiver, Nurse
                      Brain Cancer
                      After Treatment, Chemotherapy, Clinical Trials and Research, Emotional Support

                      My husband was diagnosed with a Glioblastoma at the age of 35. We have been married for 17 years and have 4 kids. Lauren 16, Austin 13, Spencer 6, and Ryan 5.Our battle has been going on for 19 months. My husband is now 37.

                      March 11, 2011-tumor found at ER in Mercy Fairfield. Symptoms..headache, left arm numb, useless. coordination terrible.
                      March 12, 2011- transfered to UC hospital in cincinnati
                      March 14, 2011- Tumor resection-Right parietal lobe. 98-99% tumor removed but ended up with left hemiplegia.
                      March 17, 2011-transferred to Drake Center for inpatient rehab.
                      March 23, 2011-acuted out at Drake, back to University with hydrocephalus. Almost died. Started to have blurred/double vision by the time he finally came around. Left hemiplegia worse.
                      March 30-April 28, 2011 Inpatient rehab, radiation, chemo at Good Samaritan hospital. Home in wheelchair with a little walking with quad cane. Turned 36 on the rehab unit.
                      May 2011-tolerated chemo/radiation well. Walking with a single point cane. No more eye patch...vision better!
                      June 2011- 1st Mri after chemo /radiation. STABLE! walking without any assistive device. Leg moving well. Arm is moving but sensation and coordination poor. Still in OT/PT will be on the road again soon (scary..lol)
                      July 4, 2011-starting temodar 440mg 5/28 cycle.
                      July 18, 2011- temodar 440mg-severe fatigue but no sickness.
                      August 4, 2011- temodar 340mg-tolerating chemo much better on decreased dose. Next MRI on August 23rd
                      August 20, 2011- Trip to ER for Left facial droop and had been sick x 3 days. CT was stable. Bad sinus infection. (whew!)
                      August 23rd- MRI stable!
                      Oct 19th-stable
                      Nov 21st-MRI stable EEG Normal. Tumor is methylated
                      Feb 15th 2012-MRI stable!
                      May 9th 2012-MRI stable and all areas of enhancement nearly resolved. Best one yet!
                      JULY 2012-MRI STABLE
                      AUGUST 2012-MRI showed an area of concern. mri with spec in september
                      SEPTEMBER 2012-2 new tumors growing in tumor bed. got a port-a-cath and started avastin.
                      OCTOBER 2012-Got a 2nd opinion in georgia..tumors are inoperable..on the motor strip. We will be getting gamma knife soon.
                      NOVEMBER 2012-gamma knife not an option. Mri this month showed extensive enhancement beyond the tumor bed. Avastin not working. Trying carboplatin next week and a trip to the cleveland clinic.
                      CANCER SUCKS BUT GOD IS GOOD!
                      "But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed."

                      For further updates, we can be followed at
                      caringbridge.org/visit/davidgamel

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