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AmandaN13's Recent CancerCompass Activity

  • AmandaN13 has replied to a post on the message board

    All these 'what to eat' tips are great. But people shouldn't get their hopes up that it will work. My husband was diagnosed with a glioblastoma in 2007 at the age of 30. After surgery, chemotherpy and radiation he switched his diet so he was a vegetarian, cut out soda, took multivitamins, vitamin D supplements and drank leafy smoothies daily. He lost the weight that they recommended. Aside from seizures things were ...

    June 01, 2017 view post
    • AmandaN13 has replied to a post on the message board

      I am very sorry for your husband as well.  I agree with what you said. I am constantly asking my husband if he is okay. Which is good because he sometimes doesn't like to tell me, he tries to be strong. This Friday he has to have a colonoscopy because he has been bleeding for 3 weeks from his rectal. If I hadn't asked he wouldn't have said anything,  it is embarrassing.  But his treatment can cause st...

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      • AmandaN13 has created a new message board discussion

        My husband is 36 years old and has been fighting a GBM for 6 years. It has grown back twice since the first occurrence. He has had two surgeries to remove the tumor. But he can't have a third. He had raditation, Temodar and now Avastin because the Temodar quit working. As of right now Avastin is his last safe chance. The only other chemo is really hard on the body and we decided not to use it.  T...

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        • AmandaN13 has replied to a post on the message board

          I understand completely. On one hand you want people to ask, but when they do you don't know how to ask. I am in the same boat. I can't really work, for one no one will allow me to miss they days my husband needs me. For two I can never say when a bad day will happen, most of his seizures are at night, but the next day he is so tired he can barely move. He works when he can, they, his doctors said he didn't have...

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          • AmandaN13 has replied to a post on the message board

            My husband had his surgeries in Iowa City at the University. Duke is a top notch brain tumor center. I would have loved for my husband to go there but traveling that far is not an opition. Cancer Treatment Centers of America is a great place, they are known for taking risks other hospitals won't. They have some all over the world. We went to the one in Chicago and loved it. But they couldn't do anything different for...

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            • AmandaN13 has replied to a post on the message board

              The hospital you are going to and the hospital who did the surgery will have copies of the testing they did on the tumor. Most hospitals due MGMT testing on the tumor without telling the results. You can ask them what the report says. My husband was tested for it in 2007, but i didn't find out about the gene until 2012 and they had actually done the MGMT testing in 2007, it showed he was not positive for it. But tha...

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              • AmandaN13 has replied to a post on the message board

                Hi, My name is Amanda and I had a question if you don't mind. My husband is 36 years old and was diagnosed with GBM in 2007, 2012 and again in Dec 2013. He has always been on Temodar, he had radition for 6 months the first time but said they couldn't do radition a second time on the brain. Avastin-Irinotecan combination drug. My question is this. I seen you posted about several other chemos, CPT11, unless that&nb...

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                • AmandaN13 has replied to a post on the message board

                  Hi Melanie, My name is Amanda. I am sorry to read about your husband. My husband was diagnosed in 2007 with his first GBM. I won't go into a lot of detail here, but we have a blog you are welcome to check out, it's listed on my 'about me' section on my profile. I am willing to be a sounding board whenever you need and give any guidance possible. Adam and I were lucky enough to not have any children yet, he was onl...

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                  • AmandaN13 has replied to a post on the message board

                    Hi. I am sorry to read about you husband. My husband also has GBM but when we discovered his first tumor in 2007 all he had was neck pain and headaches. His second tumor in 2012 was found when I noticed he was having seizures in his sleep. He is now on chemo, Temodar, long term. He has had two surgeries, both in the same spot since rarely does a GBM metastasis to another area of the body. They have said it will be...

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                      About AmandaN13

                      Caregiver, Researcher
                      Brain Cancer
                      After Treatment, Alternative Treatments, Cancer Diagnosis, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Chemotherapy, Conventional Treatments, Diet, Emotional Support, Lifestyle, Prevention Tips, Recipes, Side Effects, Supplements, Surgery

                      My name is Amanda and I am 31 years old. My husband, Adam, he is 36, was diagnosed with a GBM in 2007, when he was just 30, and a second one in 2012, now it looks like a 3rd growth. I am looking for answers, support, diet anything that will keep him here longer. We have a blog that you can read as well called, PackersGirl1983.com.
                      Please if you need a friend, can be a friend or just have answers, please reach out.

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