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loch14's Message Board Messages

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On Apr 29, 2018 8:33 PM Kris1017 wrote:

I have had a negative FIT stool and Cal-Protein.  My C-reative Protein was in normal range and I am not anemic.  I still am incredibly uncomfortable, excessive gas and some pains.  Inconsistent bowels, and thought I spotted blood, but not sure as it could be undigested food. Should I pursue colonoscopy or accept that I might just have IBS?

I would suggest to pursue the colonoscopy. My husband has stage 3 colon cancer. He was having blood work done regularly bc he already had brain cancer (not related to the colon cancer). All of his blood work was and still is normal and healthy. It never picked up that there was colon cancer there. Come to find out that his colon tumor did not express a protein that is regularly checked like most others do. His only symptom was right side abdominal pain. Not even blood in his stool. A CT scan is was discovered it. He even had a clean and clear colonoscopy 10 months prior. Follow through on gut instinct, get scoped.

On Apr 29, 2018 8:33 PM Kris1017 wrote:

I have had a negative FIT stool and Cal-Protein.  My C-reative Protein was in normal range and I am not anemic.  I still am incredibly uncomfortable, excessive gas and some pains.  Inconsistent bowels, and thought I spotted blood, but not sure as it could be undigested food. Should I pursue colonoscopy or accept that I might just have IBS?

I would suggest to pursue the colonoscopy. My husband has stage 3 colon cancer. He was having blood work done regularly bc he already had brain cancer (not related to the colon cancer). All of his blood work was and still is normal and healthy. It never picked up that there was colon cancer there. Come to find out that his colon tumor did not express a protein that is regularly checked like most others do. His only symptom was right side abdominal pain. Not even blood in his stool. A CT scan is was discovered it. He even had a clean and clear colonoscopy 10 months prior. Follow through on gut instinct, get scoped.

RE: Immunotherapy - Stage 4

by loch14 - June 23 at 2:07 AM

On Jun 21, 2018 10:22 PM TrentJackieDog wrote:

How is everything going for you and your husband? Is he still responding to treatment? Three cancers in 10 months is an awful lot to handle. I hope you are both hanging in there.

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 amazing to me is that he has not had one drop of chemo for his colon at all. Keytruda is the only treatment he is getting period. We continue to thank Jesus for everyday together. If we win, we praise Him. If we lose, we praise Him. Either way God will get the glory.

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. 

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 Keytruda, tumor site agnostic. On that note, since my last post, he was started on Keytruda because he has MSI-H and dMMR in both tumors. After just 2 infusions his brain scan showed no signs of progression. After 3 infusions, his tumor on the mesentery and both lymphnodes shrunk by 40%! My husband has not had one  drop of chemo for his colon cancer. He  just had infusion #5 this week and another brain MRI. The brain is still stable :) Look into Immunotherapy. If your husband's cancer is msi-h and/or dMMR (which I sure it is) and he's not reponding to treatment, he qualifies for Keytruda per the FDA. Both of our Oncologists at MD Anderson said if there's a type of cancer to have, it's a MSI-H tumor. 

Many Blessings to you and your family!

RE: trials for colon cancer

by loch14 - May 13 at 1:06 AM

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.

RE: Lynch Syndrome

by loch14 - April 18 at 2:11 AM

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 LS for the first time last December during his post op visit from his paritial colectomy.

RE: Immunotherapy - Stage 4

by loch14 - April 18 at 1:28 AM

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 because his body would not tolerate that amount of toxicity. So the Drs chose to go with the most dangerous, the brain. We had to just sit and wait on the colon. By February, another tumor was discovered on the mesentery and lymphnodes around the kidneys and pancreas. His brain MRI showed changes too. We immediately got started on Keytruda. He has had 3 infusions so far without adverse side effects. One thing that I have noticed is that his grey hair is being replaced with darker strands! Crazy huh? He had his first brain scan since starting Keytruda. For the first time, the radiographer labeled him stable. His scan looked more like the scan in December :) His first abdominal scan is set for the end of this month. We are a bit nervous. He also is having some discomfort where the tumor was found. Oh, he also developed squamous cell carcinoma on his face... Which is common with Lynch Syndrome, so fyi. 3 cancers all in 10 months has been tough, but God is always good! Blessings to you and your family :))

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!

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About loch14

Caregiver
Brain Cancer, Colon Cancer, Skin Cancer - Squamous Cell
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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