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Snowdr's Recent CancerCompass Activity

  • Snowdr has replied to a post on the message board

    Lomustine (ccnu) is dosed by weight and given once every six weeks. My hubby did fine the first few times then started to get fatigued about weeks 3-4. They did blood work regularly to watch platelets. Ask about adding Avastin too. Melanie

    June 25, 2015 view post
    • Snowdr has replied to a post on the message board

      If you are on FaceBook search for GBM Caregivers - it is a wonderful and inciteful closed group. Melanie (whose hubbby has been in long term care at the hospital for 28 days now)

      June 19, 2015 view post
      • Snowdr has created a new message board discussion

        Just a quick update. Tuesday marked 19 months since this horrible journey began for my hubby.  A once very active, fit, energetic 56 yr old chiropractor. Two weeks ago the kids and I placed my hubby in Swing Bed care at the local small 25 bed hospital just 7 miles from our house. It was becoming more than we could handle at home moving him from room to room. This became a better option than the nursing h...

        June 06, 2015 view discussion
        • Snowdr has replied to a post on the message board

          Just a quick update. Tuesday marked 19 months since this horrible journey began. Two weeks ago the kids and I placed my hubby in Swing Bed care at the local small 25 bed hospital just 7 miles from our house. It was becoming more than we could handle at home moving him from room to room. This became a better option than the nursing home. There was no problem admitting him as our insurance approved it right awa...

          June 06, 2015 view post
          • Snowdr has replied to a post on the message board

            I just wanted to give a brief update as I haven't been on the board in many weeks. Two weeks ago we moved my hubby to a swing bed room at the local small 25 bed hospital. (swing bed is designed for medicare patients that don't need a regualr room but can't go home either) My hubby is only 56 but there are no hospice facilities within 90 miles so this becmae a better option than a nursing home for him. Its quiet, wond...

            June 06, 2015 view post
            • Snowdr has replied to a post on the message board

              Can't tell you much as my hubby had none of those symptoms.  I do know that chemo changes the taste senses though.  They advised my hubby to eat with plastic utinsels and avoid anything metal in the mouth. My hubby didn't have the metal taste - but rather lost most of the sense of taste so everything was blah. He could taste sweet and things like pineapple and other distinct flavors.  Good luck.

              May 16, 2015 view post
              • Snowdr has replied to a post on the message board

                I agree - our cells need glucose. Most of us consume too many - however for my hubby who didn't have a great appetite on chemo and was losing weight he had a high (350) calorie nurtitional drink every day - sometimes more than 1. He is now declining faster and faster and 15# underweight so I really don't care what he eats - wants 6 cookies - go for it. He has no desire to eat meat so I give him hard boiled eggs. He i...

                May 06, 2015 view post
                • Snowdr has replied to a post on the message board

                  My hubby had CSF dripping from one of his staples over a week after surgery.  They had to go in and add a few tight stitches to close that up otherwise the body just keeps producing the fluid. He was lucky he didn't have any headaches.  The walk in clinic nurse argued and said it wouldn't be CSF or he would be having excruitiating headaches. The Dr said the same thing but did agree to culture it.  It w...

                  May 06, 2015 view post
                  • Snowdr has replied to a post on the message board

                    In my opinion I would not go back to the femoral, it's obviously doing it's job. Not sure what's all available but if I recall avastin either isn't available or not covered by insurance in Australia. It worked wonders for a short time for my hubby. Last year his march and may MRIs were great but the August one showed almost total regrowth at 3.5x4.5 cm. Three infusions of avastin and one dose of Lomustine and it was ...

                    May 01, 2015 view post
                    • Snowdr has replied to a post on the message board

                      Its heartbreaking. On Saturday we mark 18 months since diagnosis of a brain tumor for my hubby. He is not well. 95%+ resection 11-7-13. Standard treatment.  IDH1 negative, MGMT they weren't able to get a reading from. (hospital/drs never requested these tests to I did months later when I read about the testing) 6 months after radiation the tumor had regrown - aggressively to ping pong ball size. Only 3 months s...

                      April 30, 2015 view post
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                      About Snowdr

                      Caregiver
                      Brain Cancer
                      After Treatment, Cancer Nutrition, Cancer Treatments, Chemotherapy

                      Caregiver to GBM patient. My 56 yr old hubby of 24 years. Issues involve expressive aphasia.

                      11-2-13: CT scan due to severe headache determined there was a mass in the left temporal region.

                      11-7-13: Craniotomy for golf ball+ sized tumor. Thought to be grade 3 or 4. Came back as a grade 4.

                      12-17-13: Started 6 weeks of 5 days a week radiation and chemo.

                      1-31-14: Rad/Chem finished.

                      2-17-14: Started first round of 5/23 double dose temozolomide.

                      3-5-14: First MRI post treatment - great results - no new tumor growth and no swelling.

                      5-10-14: Second MRI also shows no new growth - some slight thickening of the wall of the tumor bed but they aren't too concerned.

                      8-13-14: Third MRI sadly shows almost a total regrowth of the tumor. New growth on the top of the tumor bed on the speech center.

                      9-3-14: Met with Dr's in Mayo (MN) to see if other options. They agree surgery not a good idea due to location. That takes out 2 trials as they require surgery. Closest non surgical trial is still over 200 miles away and only 50% of the patients get the added drug with Avastin.

                      We are opting for Avastin and CCNU. Starting on Monday Sept 8th, 2014.

                      Mid October MRI was great - after 3 Avastin infusions and one dose of CCNU the tumor shrunk from 5 cm to 1cm.

                      December 15th MRI showed an increase in edema and the tumor progression of .5 cm. Now MRI's every 6 weeks.

                      The January 26th MRI showed the tumor at 1.8cm but sadly it is branching off in a new direction and there is moderate swelling. No midline shift. Headed to MAYO to get more info and see what next. Decided to go with 10 sessions of reirradiation to the new tumor location. Dr felt it had an 80% chance of slowing down the progression. Now we wait - March 30th next MRI.

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