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rmp1399's Recent CancerCompass Activity

  • rmp1399 has replied to a post on the message board

    I am so sorry for this news. It can be very overwhelming in the beginning. Try to stay focused and positive. I think it is very important to be seen at a major brain tumor center...and if not definitely a neuro oncologist. Send the scans to Duke for another opinion. I know it's a little far away in NC but it is one of the best places for brain tumors in the country. They will have so many options for you. This site...

    October 10, 2016 view post
    • rmp1399 has replied to a post on the message board

      I'm so sorry you are at this stage. We just went through this with my mom. She passed last month. There were definite signs that she had that, looking back, were signs she was in the beginning stages of dying. We probably should have contacted hospice earlier than we did. She became much much weaker. She wasn't able to walk up stairs, She had very restless legs at night (which I didn't realize was a sign until I read...

      June 21, 2016 view post
      • rmp1399 has replied to a post on the message board

        My mom fought gbm for over three years. She had a stroke from the tumor bleeding (that's how we found out about the gbm). She was a little weak in her left side after that so we put in grab bars in the bathrooms and showers and made sure there were railings on both sides of the stair cases. Does he have any deficits at this point? I wouldn't make changes or move. You want to make him feel as normal and comfortable ...

        June 13, 2016 view post
        • rmp1399 has created a new message board discussion

          Does anyone have any experience with this chemo?

          February 04, 2016 view discussion
          • rmp1399 has replied to a post on the message board

            This would absolutely be so frustrating! I'm so sorry you're dealing with this. I also know what it's like to go to a military hospital and gets answers. It can be difficult at some places. I just hope you can get another opinion....maybe off post. Just this week I had a friend (who's been going to our military hospital for stomach pains for over 18 months) and just now.... they found stage 3cancer. Keep pushing unti...

            February 02, 2016 view post
            • rmp1399 has replied to a post on the message board

              I also agree with the occupational and physical therapy. Ask your doctor about it. It will definitely help. Just a side note on the radiation....for my mom, it was one of the roughest times. It made her so fatigued and she slept almost all day. I was scared it was the tumor growing and she wasn't going to make it. It is very hard on them and actually for a few weeks after it is over as well as the radiation is still ...

              February 02, 2016 view post
              • rmp1399 has replied to a post on the message board

                My mom had her first reoccurance in August of 2015 (in original cavity right frontal)...which was removed via neuroblate. She did ccnu after. She already has another reoccurance and will be having the same procedure done on Thursday this week. Not sure what the plan is yet for chemo. I'm going to ask about temodar tho, since she handled it well the first go around. This new one is in the right temporal. She's been f...

                January 19, 2016 view post
                • rmp1399 has replied to a post on the message board

                  My mom experienced the same during radiation. I'd say it was a few weeks after radiation that she got her energy back. Their brain is handling a lot and they need that rest. Slowly she started going for walks. I'm talking even just up and down the driveway....eventually she got more and more energy. I think getting up and exercising really helps. Even if it is a little bit a day. I remember being very scared during t...

                  January 10, 2016 view post
                  • rmp1399 has replied to a post on the message board

                    My mom had her first reoccurance in August of this year. She was diagnosed in January of 2013. Luckily surgery was an option for her. It was in the same location as before...right frontal. She had the neuroblate procedure this time. This is so much less invasive then her previous craniotomy. It's is just a small hole where a laser is inserted to basically cook the tumor. She was home in 2 days completely fine. Ask ...

                    November 19, 2015 view post
                    • rmp1399 has replied to a post on the message board

                      I'm so sorry you are all facing this. Stay strong and positive. Don't read into the statistics online. Everyone goes through this differently. My mom was diagnosed almost three years ago, had one reoccurance and is doing ok now. During radiation be prepared for severe fatigue. That was the scariest thing for me to see. My mom would be on the couch sleeping almost all day. I was so scared that was it and she wasn't g...

                      October 18, 2015 view post
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