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diannemf's Recent CancerCompass Activity

  • DianneMF has replied to a post on the message board

    My 28 year old daughter was getting her MRI's every 4 months in NJ. She moved last year to LA & is now seen at UCLA. Last MRI was again stable - She did not have a complete resection She has AA grade 2/3 IDH1 positive... 2 craniotomies, radiation/Temodar & follow up Temodar. . Her neuro oncologist suggested she go to one time per year, but she requested every 6 months to remain on top of things. She is at year 5 o...

    July 19 at 2:20 AM view post
    • DianneMF has replied to a post on the message board

      Hi. I Have been wondering the same thing. His first name is Ben. My now 27 year old daughter will be 4 years out in February. I am terrified. Seeing Ben on here kept me grounded. I only go on this site when I really need reassurance. Ben. Dodgerblue. I pray you are ok. I so agree with everyone else. You are always a beacon of light & hope. Whenever I hike anywhere near the Appalation Hills I think of you & your journ...

      December 19 at 6:06 AM view post
      • DianneMF has replied to a post on the message board

        I have been told that it doesn't matter if a neurosurgeon tells you it is complete or partial. This cancer is like flower seeds thrown in grass. It can spring back up whenever it wants. I live this Ca every day with my 26 yr old daughter who by the way has not had a change in her MRI in 3 years. The days leading up to the next MRI are excruciating. Her tumor still remains- most was excised- but the rest is inoperabl...

        March 22, 2017 view post
        • DianneMF has created a new message board discussion

          Has anyone seen or been treated by Dr Robert Aiken formerly of Rush Institute in Chicago now head NO @ Cancer Institute of NJ? Any thoughts or recommendations positive or negative greatly appreciated. My 25 yr old daughter with AA gr 2/3 will be seeing him soon & I want to make sure he is at the top of his game as living in the tri-state area we have many to choose from Her MRIs have been stable since 8/14 & she...

          February 06, 2016 view discussion
          • DianneMF has created a new message board discussion

            Hi, I have posted on here before & I must say that out of everyone - I'm sure many will agree- that DodgerBlue offers the most straightforward thoughts & advice. We have emailed privately too & again he offered the same kind words. I don't know if it is just this time of year or what - my now 24 yr old daughter had her first seizure on December 18th & then was finally diagnosed 3 days before her 23rd birthday w A...

            December 17, 2015 view discussion
            • DianneMF has replied to a post on the message board

              Thank you all for your inspiring words of encouragement My 24 yr old daughter finishing up maintenance chemo She has had to take lower doses bc of low neutrophil counts They always rebound though It will be a year this August that she had her last radiation treatment Except for some short term memory loss she lives each day to the fullest All MRIs have been stable & my prayer intention is that the remaining t...

              July 24, 2015 view post
              • DianneMF has created a new message board discussion

                We live under high power tension lines; they are all over our community in NJ My daughter, age 24, has AA gr 3. She also had epilepsy as a young child. Does anyone out there have a similar experience; just trying to spare anyone the future heartbreak

                May 27, 2015 view discussion
                • DianneMF has replied to a post on the message board

                  My 24 yr old daughter has had 2 major craniotomies in the past year Radiation/chemo for 6.5 weeks. Adjuvant Temodar at low doses since October She is now faced with the decision whether to continue the chemo longer although there is no scientific evidence it will help her live longer Where is she now? At a Mets baseball game with my husband & her brother & sister All I can say is truly & I am not a one day at at...

                  April 19, 2015 view post
                  • DianneMF has replied to a post on the message board

                    I think honestly it sounds pretty normal; he is recovering from a type of surgery that is very different than others. The brain & body need time to heal. Call your neurosurgeon if you are worried. Your husband is probably on painkillers anti seizure meds as well as steroids & they all can contribute to fatigue. Be patient. Let him rest. Try & have some healthy food choices like fruit or veggie smoothies available &...

                    April 19, 2015 view post
                    • DianneMF has replied to a post on the message board

                      My 24 yr old daughter was on the similar radiation/chemo regime at UPenn for 6.5 weeks She did fine on this during that time. Her side effects consisted of fatigue, severe constipation & some nausea. After all of this, it was her overall blood counts that where most concerning & prevented her from the adjuvant Temodar for many weeks. Please be vigilant with this & monitor carefully with your neuro oncologist

                      April 18, 2015 view post
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