Lynch Syndrome/Glioblastoma

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Lynch Syndrome/Glioblastoma

by ajosmith on Wed Feb 21, 2018 02:47 PM

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I was diagnosed with stage IIIB colon cancer in May 2007. I was 27 years old at the time. I had genetic testing done and found out I had the genetic mutation Lynch Syndrome. I underwent a total colectomy. Since the cancer was a a higher stage it had spread to 2 of my lymph nodes. I had to go through 6 months of chemotherapy for preventative measures. It was tough but I powered through it. I was not going to let this disease beat me down. I continued to work during my chemo treatments even carrying around the portable bag they give you connected to my port. After the six months of treatment was up I continued to have testing done (ie; blood work, CT scans, EDG’s) to check for cancer in others parts of my body. Lynch Syndrome makes your more susceptible to other forms of cancer. In 2009, after one of my many tests done I found out I had uterine cancer but thanks to the good lord above we caught it early enough it was only a stage 1. I underwent a total hysterectomy. Mind you I was only 29 years old at the time. Before I was diagnosed with uterine cancer, my husband and I were talking about having another child. We have one daughter already. Well stupid cancer blew that dream out of the water. I continued to have my testing done yearly for my cancer screenings. After five years of being cancer free I stopped having the blood work and CT scans. I just had yearly EGDs and Flexible Sigmoidoscopies done. Always coming back negative. June 2017 I was sick with what I though was an ear infection per my family doctor. He put me on antibiotics. This was on a Friday. As of Sunday things took a turn for the worse and I was feeling like I had been run over by a truck. I went to the emergency room where they advised I had tonsillitis and sinusitis. They gave me a stronger form of antibiotic. Monday morning I woke up with half my face paralyzed. My husband took me to the urgent care and they put me on a steroid and antiviral. I was referred to an ENT who referred me to a specialist. I was scheduled to have a MRI to make sure there was nothing more serious, I was having severe vertigo and terrible headaches. I had the MRI done and everything looked normal. The doctor wanted me to stay on the antiviral for 6 months. I continued to have the facial paralysis up until the end of July. My husband suggested I get a second opinion. We got a referral to a Neurologist office who is a friend of my husbands. I was seen by this doctor and he knew exactly what to do. I was so happy. He prescribed a new medication for me for the headaches. It was an antidepressant. I was a little surprised by that but once I started the medication my headaches started going away. My face was back to normal and I was feeling a lot better. The Neurologist also referred me to have PT. I started the PT and realized that my headaches were caused by the position of my neck and my poor posture. The therapist gave me an excercise plan and I completed that for about 3 months or so. I was feeling great and doing my normal daily activities. I was not having headaches like I was before. It was a Monday in January 2018 I caught the flu. I was off work for almost a week. The weekend came and I was feeling better. It was so tired of being bed ridden all week so my husband and I wanted to do some cleaning around the house. I was starting to clean out my spare room closet and the next thing I remember was my husband picking me up off the floor asking me what happened. I was disoriented so my daughter called 911 for the EMS to come get me. They took me to the ER at a different hospital that was not affiliated with my Neurologist. They ran several tests. Apparently I had a seizure. I had another MRI done and found out there was a mass in my brain. I was referred back to my Neurologist and then referred to a Neurosurgeon. I had surgery to remove the mass and the pathology came back showing Grade 4 Glioblastoma. I am still recovering from the surgery and I have to say I feel great. I have occasional headaches but I am doing ok. I will be starting radiation and chemotherapy in a few weeks. I do not know how I am going to feel with the side effects but I was advised that the Chemo they are putting me on is not as bad a the chemo I was previously on for the colon cancer. I am optimistic and I know I have a long road ahead of me but I am very determined to be the miracle and beat this cruel disease. This will be my 3rd time having cancer. I have beat it before and I will again. I just wanted to share my story and get any feedback if anyone has had the same diagnosis.

RE: Lynch Syndrome/Glioblastoma

by loch14 on Wed Feb 21, 2018 04:07 PM

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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: Lynch Syndrome/Glioblastoma

by Marisa1 on Mon Oct 15, 2018 09:01 PM

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Can you tell me how your hubby did on the keytruda? My daughter was diagnosed with Aa3 as well and tried the Nivolumab which failed to work for now! Hers is idh1 mutated and is also lynch related she has msh2 gene!

RE: Lynch Syndrome/Glioblastoma

by loch14 on Mon Oct 15, 2018 09:30 PM

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Hi Marisa1 :) I had forgotten about this post. Since then, my husband is doing incredibly well. His GI calls it miraculous and his Neurologist can't explain it. Like I said in the previous post, only Jesus can get the credit. His 12th infusion is tomorrow. His tumors shrunk by 40% after just 2 infusions and his brain has been stable since April. As a matter of fact, his last MRI in September shows a reduction in the enhancement. He his also has been doing the theraputic level of the Ketogenic diet (80% healthy fat/15% protein/5% carbs that he gets from healthy sources). He was taken off of steroids in April and hasn't been back on since as the inflammation has come down dramatically. His blood work (including cholesterol) has been great also. His NO at MD Anderson called him an egnegma, an anomaly. Oh, and since this post he also developed squamous cell skin cancer (it showed up before his Keytruda started). That one is also in check. So to sum it up....3 primary cancers, 1 treatment. We serve a Mighty God who is able :) Praise Jesus!

RE: Lynch Syndrome/Glioblastoma

by Marisa1 on Mon Oct 15, 2018 10:36 PM

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So glad to hear that your hubby is doing well! My daughter who is 13 tried 6 rounds of Nivolumab and it seems to not have worked, they want to try and do surgery as it is in her speech part of her brain than try another therapy! Is keytruda the same as Nivolumab!

RE: Lynch Syndrome/Glioblastoma

by loch14 on Mon Oct 15, 2018 10:41 PM

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We will be praying for wisdom and success! It's in the same family. They are both checkpoint inhibitors. But Keytruda targets a different molecule.

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