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loch14's Message Board Messages

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RE: Lynch Syndrome/Glioblastoma

by loch14 - February 21 at 4:07 PM

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 clear colonoscopy. We had never heard of Lynch Syndrome until we went for his post op visit after his partial colectomy. He was tested and came back positive for Lynch Syndrome. So now he is battling both cancers at the same time.  I  contacted Mayo and asked they also test the brain tumor for MSI-H and dMMR. The results were the exact as the results from the colon cancer tumor. Therefore, he qualifies for the use of Keytruda for both the brain and colon under the FDA guidelines. However, for my husband, it had to be in a recurrent setting for one or the other. He was stable with both in December. We want to do Keytruda to deal with both, but this is uncharted territory. Well, we got news today that his colon cancer is recurent. Both the neurologist and give Oncologist are working together. My husband begins Keytruda next week. We know it has an 80% success rate for MSI high mCRC. We don't know how it will affect a MSI high glioma. Only Jesus can do this work, and only Jesus will get the glory. We will be praying for great success for you! God is always good.

RE: Immune therapy

by loch14 - February 15 at 5:08 PM

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 and brain. The problem we are facing is that #1 the FDA approved it under a recurrent setting (and he isn't) and there isn't a whole lot of info to say whether it will be as effective for his brain tumor as it has been proven to be for others cancers with the same mutations. His neuro at UTSW said no to it. We met with the top neuro at MD Anderson who said that his case is very unique and it could be very effective. The Mayo Clinic said the same thing. Because he has two separate primary malignancies, he is an automatic disqualification for all bu t one clincal triall. However, we may not need to go the clincal trial way. There is so much "unknown", but from the beginning of our journey, we knew that only God can get the glory for his recovery. We are hoping this will work since pembro works  crazy good for small subsets of patients across several different cancer types. Best of luck to you and your family! The most important thing I've learned so far is the importance of knowing and understanding your pathology report. Ask questions and be proactive!

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 though he now qualifies for Keytrude based on his biomarkers. The geneticist says that 90%+ of his Lynch Syndrome patients respond dramatically with Keytruda. The question is whether or not it is as successful in the brain for this same sub-type brain cancer patients. Each of our 4 children will need to get tested, but only at 18 years of age. They are all very young now, so hopefully there will be a cure for not just cancer but for this genetic defect!

On Dec 20, 2017 6:12 PM loch14 wrote:

My husband was diagnosed with a primary brain tumor May of 2017. His surgery was in June. He was the topic of a few conferences for the the neuro ocologists and neuro surgeons at Mayo. His biomarkers were not typical of most brain tumors. He's IDH wildtype but his MGMT is metholayted. TERT is absent. It look the Mayo Pathology 5 weeks to put an official name on it. Old science he's AA3 but on a molecular level, he's close to GBM. After coming back home to Texas for treatment, he completed 6 weeks of radiation and Temodar. By God's grace, he flew right through it. His follow-up scan showed post radiation change but we were told that its likely pseudo progression because he is MGMT metholyted. His next scan will be tomorrow 12/21. In the meantime, he felt strongly to go on a 40 day water fast to acknowledge that only God himself can do the work. We were also told by his Neurologist had mentioned that the Keto Diet was/is used to control epelipsy and there is discussion on how it affects brain tumors. This was my husband's confirmation that he needed to go ahead with the fast. He sailed through the fast beautifully too, to all of his doctor's dismay! Well, the week he came off his fast and began to slowly intoduce food/ non water liquids back to his body, he began to have pain in his side. After a rush to the ER, an apple core lesion was discovered on the asending side of his colon. The doctor said that his fast exposed the lesion because for years, my husband took Metamucil everyday. It would likely have stayed hidden had the Metamucil continued. After surgery, the biopsy came back as stage 3 colon cancer. The colon cancer was not a big shocker because colon cancer runs very strong in his family. His brother passed away August of 2017 to bladdar cancer, likely colon cancer. The timing was a shock to us. My husband has gone religiouly for colonoscopies over the past 10 years... every 2 years. His last scope was the end of December 2016, which was completely clean and clear. Within 11 months, he had developed another primary high grade cancer. It was confirmed his colon cancer is independent of his brain cancer. His pathology from his colon showed that he has an inhereited gene mutation disorder that is pasted from generation to generation. Lynch Syndrome. No one in his family has ever had brain cancern though. His gene mutations meet the FDA guidelines for Keytruda because he has a Mismatched Repair (MMR) gene mutation which led to Microsataliliet Instability (MSI). These genes are not tested in brain tumors so his colon cancer is a blessing in disquise. 

Is there anyone else diagnosed with Lynch Syndrome that has a brain tumor also? I know its rare. Or someone that has multiple primary cancers bc of Lynch Syndrome that has used Keytruda?

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

My husband was diagnosed with a primary brain tumor May of 2017. His surgery was in June. He was the topic of a few conferences for the the neuro ocologists and neuro surgeons at Mayo. His biomarkers were not typical of most brain tumors. He's IDH wildtype but his MGMT is metholayted. TERT is absent. It look the Mayo Pathology 5 weeks to put an official name on it. Old science he's AA3 but on a molecular level, he's close to GBM. After coming back home to Texas for treatment, he completed 6 weeks of radiation and Temodar. By God's grace, he flew right through it. His follow-up scan showed post radiation change but we were told that its likely pseudo progression because he is MGMT metholyted. His next scan will be tomorrow 12/21. In the meantime, he felt strongly to go on a 40 day water fast to acknowledge that only God himself can do the work. We were also told by his Neurologist had mentioned that the Keto Diet was/is used to control epelipsy and there is discussion on how it affects brain tumors. This was my husband's confirmation that he needed to go ahead with the fast. He sailed through the fast beautifully too, to all of his doctor's dismay! Well, the week he came off his fast and began to slowly intoduce food/ non water liquids back to his body, he began to have pain in his side. After a rush to the ER, an apple core lesion was discovered on the asending side of his colon. The doctor said that his fast exposed the lesion because for years, my husband took Metamucil everyday. It would likely have stayed hidden had the Metamucil continued. After surgery, the biopsy came back as stage 3 colon cancer. The colon cancer was not a big shocker because colon cancer runs very strong in his family. His brother passed away August of 2017 to bladdar cancer, likely colon cancer. The timing was a shock to us. My husband has gone religiouly for colonoscopies over the past 10 years... every 2 years. His last scope was the end of December 2016, which was completely clean and clear. Within 11 months, he had developed another primary high grade cancer. It was confirmed his colon cancer is independent of his brain cancer. His pathology from his colon showed that he has an inhereited gene mutation disorder that is pasted from generation to generation. Lynch Syndrome. No one in his family has ever had brain cancern though. His gene mutations meet the FDA guidelines for Keytruda because he has a Mismatched Repair (MMR) gene mutation which led to Microsataliliet Instability (MSI). These genes are not tested in brain tumors so his colon cancer is a blessing in disquise. 

Is there anyone else diagnosed with Lynch Syndrome that has a brain tumor also? I know its rare. Or someone that has multiple primary cancers bc of Lynch Syndrome that has used Keytruda?

Brain tumor/Lynch Syndrome/MMR/MSI-High?

by loch14 - December 20 at 5:37 PM

My husband was diagnosed with a primary brain tumor May of 2017. His surgery was in June. He was the topic of a few conferences for the the neuro ocologists and neuro surgeons at Mayo. His biomarkers were not typical of most brain tumors. He's IDH wildtype but his MGMT is metholayted. TERT is absent. It look the Mayo Pathology 5 weeks to put an official name on it. Old science he's AA3 but on a molecular level, he's close to GBM. After coming back home to Texas for treatment, he completed 6 weeks of radiation and Temodar. By God's grace, he flew right through it. His follow-up scan showed post radiation change but we were told that its likely pseudo progression because he is MGMT metholyted. His next scan will be tomorrow 12/21. In the meantime, he felt strongly to go on a 40 day water fast to acknowledge that only God himself can do the work. We were also told by his Neurologist had mentioned that the Keto Diet was/is used to control epelipsy and there is discussion on how it affects brain tumors. This was my husband's confirmation that he needed to go ahead with the fast. He sailed through the fast beautifully too, to all of his doctor's dismay! Well, the week he came off his fast and began to slowly intoduce food/ non water liquids back to his body, he began to have pain in his side. After a rush to the ER, an apple core lesion was discovered on the asending side of his colon. The doctor said that his fast exposed the lesion because for years, my husband took Metamucil everyday. It would likely have stayed hidden had the Metamucil continued. After surgery, the biopsy came back as stage 3 colon cancer. The colon cancer was not a big shocker because colon cancer runs very strong in his family. His brother passed away August of 2017 to bladdar cancer, likely colon cancer. The timing was a shock to us. My husband has gone religiouly for colonoscopies over the past 10 years... every 2 years. His last scope was the end of December 2016, which was completely clean and clear. Within 11 months, he had developed another primary high grade cancer. It was confirmed his colon cancer is independent of his brain cancer. His pathology from his colon showed that he has an inhereited gene mutation disorder that is pasted from generation to generation. Lynch Syndrome. No one in his family has ever had brain cancern though. His gene mutations meet the FDA guidelines for Keytruda because he has a Mismatched Repair (MMR) gene mutation which led to Microsataliliet Instability (MSI). These genes are not tested in brain tumors so his colon cancer is a blessing in disquise. 

Is there anyone else diagnosed with Lynch Syndrome that has a brain tumor also? I know its rare.

Hi, my husband was diagnosed earlier this year with AA3, but molecular levels are more in line with GBM. He had his surgery at Mayo in Rochester (we live in Tx). We have nothing but good to say about Mayo. His surgeon was amazing and the neuro oncologist is a blessing. He calls to check up on him now that we are home (even on a Sat afternoon). We haven't had any experience with Duke, so unfortunately i can't compare the two for you. I do know they are gearing up to begin a dendritic cell vaccine trial at Mayo for recurrent GBM.

Best of luck. I'll be praying for you and your husband :) God is good.

Hi John,

My husband was diagnosed with AA3 this summer. He was switched to Keppra from Dilantin prior to his surgery. He shortly after began having hallucinations. It only happened while he was waking up in the morning or from a nap. I immediately notified the doctor and asked to have him taken off. He was put back on dilantin. After his surgery and during his radiation and temodar, we found out that dilantin interfered with the Temodar and made it less effective. He was finally weaned off the Dilantin again and is now only on Vimpat. So far so good. It makes him drowsy about an hour after taking and has some slight tremors, but other than that, he's tolerating it better than the others. Hope this helps.

God bless :)

Stephanie

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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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