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loch14's Recent CancerCompass Activity

  • loch14 has replied to a post on the message board

    Hey there. We are both doing well thank you. My husband had an addominal scan in April that showed the 4.5 cm tumor and the 1.8 lymphnodes above the pancreas and kidney all shrank by 40%. This was after only 3 infusions of Keytruda. His two latest brain MRI's from April and May have shown stable. His next CT scan and MRI is set for mid July. Thankfully our medical insurance is covering all his treatments. What is ama...

    Saturday at 2:07 AM view post
    • loch14 has replied to a post on the message board

      Have you met with a physical therapist that specializes in neuro? My husband also has a high grade glioma. He's on Keytruda, and by God's grace, he's stable with no evidence of progression. He also is MGMT methylated. However, he has a lot of spasticity in the shoulder, wrist, hip and ankle. This makes walking difficult too. 

      May 29 at 9:39 PM view post
      • loch14 has replied to a post on the message board

        I also just requested for a full genetic sequencing to be done on his colon and brain tissue. One thing I specifically looking for are TRK gene fusions. According to the GI Oncologist, they happen more frequently in MSI-H cancers like our husbands. Loxo Oncoloy just applied for fda approval for one of their targeted therapies that has a crazy high response rate in a small subset of patients. It will also be like Keyt...

        May 26 at 1:22 PM view post
        • loch14 has replied to a post on the message board

          Look at MD Anderson in Houston, Texas. My husband has both advanced colon cancer and a primary brain cancer. He is being treated at UT Southwestern in Dallas but also has a team of both neurologists and GI Oncologists at MD Anderson.

          May 13 at 1:06 AM view post
          • loch14 has replied to a post on the message board

            Hi Kshelby, My husband's family has a long history of colon cancer going back to his great grandfather. His grandmother had colon cancer then kidney cancer. His brother had bladder cancer, likely colon cancer and squamous cell carcinoma. My husband was the first in the family to develop brain cancer, which is verified to develop from LS, and then developed colon cancer and squamous cell carcinoma also. We learned of...

            April 18 at 2:11 AM view post
            • loch14 has replied to a post on the message board

              Hey there. My husband was also diagnosed with Lynch Syndrome, MSH2. He developed brain cancer first in May of 2017, then 6 months later, stage 3 colon cancer. That's what clued us to Lynch Syndrome. His colon tumor is MSI-H and dMMR. I called Mayo (who did the craniotomy) to ask that they test his brain tumor for MSI-H and dMMR. Sure enough, exact match as the colon. We could not treat both cancers concurrently becau...

              April 18 at 1:28 AM view post
              • loch14 has replied to a post on the message board

                Hi there :) My husband was diagnosed with AA3 per Mayo, GBM per UT Southwestern here in Texas. This was May of 2017. By November of 2017, he was diagnosed with a second primary cancer, stage 3 colon cancer. The colon cancer wasn't a big shock bc colon cancer runs deep in his family tree. The brain cancer was a total shock. The timing of the colon cancer was also a shock bc less than a year prior, he had a clean a cle...

                February 21 at 4:07 PM view post
                • loch14 has replied to a post on the message board

                  My husband diagnosed with AA3 last summer. Since then, we discovered he has Lynch Syndrome after he developed colon cancer later in 2017. I had his brain tumor tissue tested for dMMR and Microsatellite Instability. It came back that it was dMMR and was Microsatellite Instability High. The same genetic deletions were identified in the colon tumor tissue. This means that he qualifies to use Keytruda for both his colon ...

                  February 15 at 5:08 PM view post
                  • loch14 has replied to a post on the message board

                    Thank you for the response. I'm sorry to hear about your mother. My husband's brother passed away 4 months ago with bladder cancer. I also am convienced he had Lynch too. We just received test results back that my husband's brain tumor is also dMMR and has high microsatalite instability. The same gene mutations in his colon tissue are found in the brain tissue. The Neuro here in Tx wants to keep on with Temodar even ...

                    January 02 at 7:29 PM view post
                    • loch14 has replied to a post on the message board

                      Sorry, subject line is a victim of auto correct! It's supposed to read Lynch Syndrome not Lunch Syndrome

                      December 20 at 6:14 PM view post
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                      About loch14

                      Caregiver
                      Brain Cancer
                      Cancer Treatments, Clinical Trials and Research, Diet, Hormone Therapy

                      My husband was diagnosed with brain cancer while visiting his brother in South Africa. He had been diagnosed with stage 4 bladder cancer 4 months before my husband was diagnosed. The silent hand of God has been evident every step of the way. We have 4 beautiful young children and we look forward to continuing to watch them grow! God is always good.

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