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rosegamel's Recent CancerCompass Activity

  • rosegamel has replied to a post on the message board

    I havent been on here for so long... I decided to check on people tonight and I saw your post. Funny how that works. Im truly sorry for your loss. It's one of the toughest things I have ever experienced in my life, and Im sure yours as well. I take comfort and peace in knowing that my husband suffers no more. You have been so strong and diligent in treating and caring for your husband. Stay strong throughout the holi...

    December 19, 2013 view post
    • rosegamel has replied to a post on the message board

      robin...we didn't have the device on trial with our doctor either but she could still prescribe it then they have a representative from novocure come in the office and show you how to use the device. I think our insurance picked it up, however, novocure will almost automatically "approve" you for the device even if your insurance doesnt pay because they have a special program that will pick up the cost as long as you...

      August 29, 2013 view post
      • rosegamel has created a new message board discussion

        My husband died on July 8th. It was nothing that I expected even after everything that I read from everybody here or on the brain hospice website. We knew things were getting close but we thought we had a little bit more time. My husband hated to take decadron..he would take it but not as often as he was supposed to. The morning of July 3rd he complained of a horrible headache. Bad enough to want to go to the hospit...

        July 31, 2013 view discussion
        • rosegamel has replied to a post on the message board

          Matt...very sorry for your loss. I just happened to be on here although i dont get on much anymore...but I have read your posts.My husband is going into hospice this week after a 28 month battle. You are a wonderful and loving father. God WILL heal your heart although it may take a while. My kids ask why after all the praying we have done has God not healed their father...my answer was simple. Sometimes God says "no"...

          June 30, 2013 view post
          • rosegamel has replied to a post on the message board

            Hey robin! We just got off the Dovitnib trial. My husband did terrible on it. Progressed and had some crazy skin sloughing side effect..way worse than avastin. Dr. Alawahlia said it was working for a couple of his other patients tho. It didn't seem to touch my husband. They suggested hospice when we returned to Cincinnati  care....my husband refused so now we are on ketogenic diet adn novo-ttf. We start Novocure...

            June 20, 2013 view post
            • rosegamel has created a new message board discussion

              I dont get on here much anymore. My husband has been on a trial out of cleveland for about 2 months. We get our first MRI on WEd.since the trial began. I dont believe the chemo is working. We have had a rapid and steady decline in function not to mention some ugly side effects from the chemo. He is unable to walk very far. What steps he does take is with a cane but long distances he requires a wheelchair. He gets for...

              June 09, 2013 view discussion
              • 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, 2013 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, 2013 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, 2013 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, 2013 view post
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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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