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jon4156's Recent CancerCompass Activity

  • jon4156 has replied to a post on the message board

    Hello Folks.  I know an update on my wife is overdue but we have been through an arduous ordeal. Surgery for the second tumor was performed Mar 4 and successfully removed all area of enhancement.  Unfortunately the surgery required getting into some sensitive areas of her brain and the outcome from a physical perspective was not very good.  My wife now suffers hemiparesis on her left side with minimal...

    April 11 at 5:08 AM view post
    • jon4156 has replied to a post on the message board

      Thank you all again for wonderful responses of support. We are excited that a brand new state-of-the-art surgical suite called "Center for Surgical Innovation" was just recently brought online last week and will be available for her operation. It is specifically designed for difficult surgeries such as brain tumors and my wife will be only the second patient qualified to receive it's use thusfar. See link ...

      March 04 at 2:27 AM view post
      • jon4156 has replied to a post on the message board

        Thank you all for the kind words and support.  The tumor is relatively large, two inches in diameter, and both the NO and Neuro-surgeon are surprised at the amount of growth since her Dec 3 MRI which showed nothing.  We viewed the MRI image and I was taken back at the size.  It was very disappointing since most of the recurrences I've read about seem to be smaller than the original, presumably because ...

        February 21 at 3:41 PM view post
        • jon4156 has replied to a post on the message board

          One more piece of information for those wondering how fast GBM grows.  My wife's last MRI was Dec 2 and was absolutely clear, no issues.  Two and a half months later (Feb 15) it caused a seizure and showed up on MRI.

          February 18 at 6:32 PM view post
          • jon4156 has created a new message board discussion

            34 months 28 days since initial diagnosis, my wife's cancer has returned.  She suffered a seizure Saturday which led to discovery of a new lesion.  She was released last night and we are waiting to hear from the tumor board at the medical center regarding whether it is operable and what our options are.

            February 18 at 6:27 PM view discussion
            • jon4156 has replied to a post on the message board

              robflash, I think you make some very good points.  I have a 23 year old daughter and can't imagine her being in kristen's position. 

              February 15 at 2:32 AM view post
              • jon4156 has replied to a post on the message board

                Thank God for good days, wishing you more of them in the future.

                February 15 at 1:48 AM view post
                • jon4156 has replied to a post on the message board

                  Seancrouch, my wife went through the same thing.  Sometimes a new life can be a regular life if you approach it optimistically. My wife returned to work immediately after radiation treatment.  According to her, work was going wonderfully and she was performing stupendously.  She had worked at the company for 16 years without ever missing a day prior to her GBM diagnosis.  About 18 months after he...

                  February 14 at 4:44 PM view post
                  • jon4156 has replied to a post on the message board

                    In a previous post you stated that your boyfriends January MRI showed three new nodules of growth and other growth had crossed the hemispheres.  You also cited personality disorders that were making it difficult for you to interact with him.  Those are deficits and symptoms, so I'm astonished that you would now suggest he has none.  Sincerely, I'm not trying to pick a fight with you, but do y...

                    February 14 at 1:56 PM view post
                    • jon4156 has replied to a post on the message board

                      Listen to his doctor.  What to do with flu during treatment?...see his doctor and follow the doctors orders. Regarding vitamins, he will be getting regular blood tests which will show any vitamin deficiencies and his doctor can advise whether any supplemental vitamins are necessary.  Otherwise you are just wasting your money taking vitamins for no reason. Forget about a ketogenic diet, most people don't u...

                      February 13 at 8:52 PM view post
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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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