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jon4156's CancerCompass Friends

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About jon4156

Caregiver
Brain Cancer
Cancer Treatments, Chemotherapy, Conventional Treatments, Radiation

My wife (age 48) was diagnosed March 21, 2011 with GBM-4 in the right temporal lobe after suffering a week of severe headaches, nausea, fatigue, and general confusion. She went to her doctor on March 17 complaining about her symptoms and the doctor assessed it as a viral infection. Symptoms remained on March 21 and she could barely function so I made another appointment early that morning and saw a different doctor. He took one look at her, asked a few questions, and said "this is no viral infection" then told me to bring her to hospital emergency room immediately. MRI and CAT scans showed presence of tumor and she was transported to a Tier 3 hospital. She spent one week in ICU to get her brain swelling under control and had a craniotomy/resection on March 28, 2011. Almost all of the tumor was successfully removed. The only side-effect of surgery was some light weakness on left side, particularly left arm and hand. Released from hospital and entered rehabilitation on April 1, 2011. One week of rehabilitation returned most of her functionality lost to surgery. Released from rehabilitation on April 8, 2011.

We were offered an Avastin clinical trial for newly diagnosed tumors. What to do?? Performed LOTS of research and read MANY medical journals and trial results. Got "second" opinions from three highly rated doctors in three different hospitals. We declined the Avastin trial at this time due to potential side effects with the drug and the fact it would exclude her from the Novo-Cure trial after radiation was complete. We opted for standard treatment (radiation and temodar) with the intent of participating in the Novo-Cure clinical trial afterwards.

She finished radiation and Temodar on June 14 with no major side-effects. She experienced fatigue, hair-loss, loss of appetite (nothing tasted good anymore) and occasional nausea. Zofran easily controlled the nausea. She was anti-red-meat for about 8 years prior to her diagnosis but post-surgery found cheese-burgers being one of the only things she found pleasant to eat (yeah mcdonalds!).

June 27, 2011. She returned to work and is currently doing very well. Almost all food tastes good again and fatigue has passed for the most part. Still occasionally feels nausea depending upon certain food smells, but Zofran corrects this easily enough. She is glad to be back at work and feels less fatigued because she is not sitting around the house doing nothing.

July 13, 2011. MRI results. Images look good, no indication of recurrence.

July 29-Aug 2, 2011. Started adjuvant temodar (260mg) and handled it very well. A bit more fatigued than usual and also vomited two days (one time each day). The worst effect is that food not tasting good has returned. Any kind of pasta is ok, plain fish is ok, plain chicken is ok, and cheeseburgers are ok. Everything else makes her nauseous just smelling it.

August 25-29, 2011. Second round of adjuvant temodar (260mg) and handled it very well. Fatigued, but not as much as the previous round. Vomited only once, two days after completing the cycle. Smell and taste not affected so much this time.

September 22-26, 2011. Third round of adjuvant temodar (340mg) handled very well. No vomiting this month although some nausea was present. Kytril and Zofran do a good job controlling the nausea. Certain food smells will make her nauseous, but enjoying almost all foods now. Still working although her performance is reduced.

October 15, 2011. Labs and MRI results. Images look good and no indication of recurrence.

Will update this area as things progress.

Major Milestones
March 21, 2011 - Diagnosis GBM-4
March 28, 2011 - Craniotomy and resection
April 1, 2011 - Released from hospital to rehabilitation
April 8, 2011 - Released from rehabilitation to home
May 3, 2011 - Start radiation and Temodar
June 14, 2011 - End radiation and Temodar
June 27, 2011 - Return to work
July 13, 2011 - First post-radiation MRI. Images are clear, no tumor progression.
July 19, 2011 - Apply for Novo-Cure clinical trial.
July 20, 2011 - Denied Novo-Cure device due to randomization.
July 25, 2011 - Back to original oncologist. After reading the MRI he said it was the best he has ever seen in his life. All clear at this point.
July 29, 2011 - Adjuvant Temodar, first 5/23 cycle.
Aug 25, 2011 - Adjuvant Temodar second 5/23 cycle.
Sep 10, 2011 - MRI & MRS scans
Sep 15, 2011 - Labs & Checkup - MRI scans are clear and doctor says he could not be happier with the results so far.
Sep 22, 2011 - Adjuvant Temodar, third 5/23 cycle.
Oct 11, 2011 - Labs & Check up. All blood work is good. Experiencing severe pain in legs at night. Doctor thinks it might be fibromyalgia and will test for this on 10/17/2011.

Next milestone:
Oct 17, 2011 - Blood test to see if we can find source of her nightly leg pain.
Oct 20, 2011 - Begin fourth cycle of adjuvant Temodar (340mg).

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