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DianneMF's Message Board Messages

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RE: How often do you get an MRI?

by DianneMF - July 19 at 2:20 AM

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 of her diagnosis. My daughter is living her life every day in the most positive, joy filled, adventurous way possible She works full time, travels, and has become a Reiki practitioner. She is a vegan, exercises & does yoga/meditation daily K. does take CBD oil She is thriving not merely surviving. I pray for that for everyone reading this post. Believe me, this journey has taken us places emotionally that we never thought we would experience. We still have moments of sadness & sheer terror. But have come to a place of trying to just live in the moment. And try to remember that every day is a precious gift.

RE: DODGERBLUE

by DianneMF - December 19 at 6:06 AM

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 journey. I pray you are ok & just taking a posting break. ????
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 inoperable. Her quality of life? Amazing. She works, travels, dates, lives her life to the fullest extent possible. We too do not look or think about prognosis. What is the point honestly?? It has taken a lot of soul searching & therapy to get to this point. But each day seeing her, getting a text, crazy email or phone call is a blessing. She sees a therapist who specializes in PTSD - bc that is what is has come down to. You can't change what has happened to you, but you can & you will move past this. I pray that my amazing daughter will continue to thrive, grow & just live. I pray this nightly for her & everyone on this site in BT world. It's a very lonely place ; one that most people never experience & those who do know what I mean.
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 did the usual course of treatment 2 craniotomies, radiation, chemo, & one year of Temodar All tumor could not be removed; what is left is inoperable Thank you

I just need a (virtual) hug

by DianneMF - December 17, 2015

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 AA gr 3. She will be 25 in January. Had 2 craniotomies ; radiation/chemo & then 12 months of a reduced dose of Temodar due to low neutrophil counts. Now she is done & taking supplements & continuing w a vegan diet, exercise, reiki & reflexology. To look at her or speak w her - as a stranger - you would never guess she had cancer. But there is the memory loss, fatigue, joint pain, hair that just won't grow in near the strongest radiation points I guess. She still can't find a job. I had to go back to work so she spends a lot of time alone. I just really go through the motions, you know? I can't even listen to my favorite Christmas carol anymore ...through the years we all will be together, if the fates allow. Crazy but I am in therapy on an antidepressant but it all seems so pointless. I am a pediatric OT w an extremely demanding autistic caseload. I need to work not only for my salary but my benefits. BT treatment is expensive as you all know. My marriage is falling apart; my other kids seem to resent the attention given to their sister. Friends & family seem to have deserted us ; they can't deal with it either. So, here I am on a virtual cancer post asking & needing for a hug & your prayers to keep going; to keep trying to be strong for my daughter. Before all this, I was resilient. Please pray for me to get back to that point in my life so I can be there for Kelsey. Take care everyone & a blessed Christmas & healthy 2016 to everyone
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 tumor will just be a spontaneous remission Kels is a vegan, juices daily, has run 5ks, backpacked through Australia, does aerial yoga, exercises daily, works from home as a writer & photographer & was recently honored for the Courage award through Voices Against Brain Cancer. I will mention that we both traveled to Lourdes, France & last month to see John of God in Brazil. These experiences have given us courage & faith to let go & let God- in whatever form you perceive him to be
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
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 a time person by any means- very type A- is to take this one day at a time. Sometimes I have to take it 5 mins at a time This whole experience is surreal. Trust me I know The sun is shining. Birds are singing. Flowers are finally beginning to bloom Yet here we sit confronting this unfathomable disease, the future, our hopes & dreams & yes ask, why us? Friends & relatives will have well meaning advice. Drs will throw a lot of information at you & you as the caregiver have to make some informed decisions Take a minute or longer. Catch your breath. Have a trusted friend or relative go with you to the appointments to be a second set of ears. Write everything down. Take time to process it all. ONLY GO TO MAJOR BRAIN TUMOR CENTERS THAT DO MORE THAN 300 surgeries per year. Try to find a few minutes for yourself every day To walk. To pray. To laugh. To talk to someone who really gets you Take good care. You will get through this
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 & a calm quiet environment available to him so he can feel safe & comfortable
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
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