Early study found it had high accuracy, but experts say it won't replace colonoscopy anytime soon
by bill1958 on Mon Jun 25, 2012 03:07 AM
Here is our story. While 100 miles away from home my 58 year old wife had a seizure and was brought to the local hospital on October 18, 2011. Ten days later we were told she had an oligodendroglioma grade 3 tumor in the left parietal lobe. A sample was sent to the Mayo Clinic for 1p/19q deletion testing. We opted for awake open-craniotomy surgery at Brighams and Womens Hospital in Boston. This was performed on November 30th and removed > 90% of the tumor which had grown quite a bit since its discovery. Their dx was anaplastlc atsrocytoma grade 3 with features of oligodendroglioma.
The surgery went well but a month later, while waiting for our NO appointment near our home (the Norris Cotton Cancer Center at Dartmouth Hitchcock Hospital), she again had seizures. She was brought to the same hospital where she was diagnosed as we were in town on a day trip. After three weeks there she was transported to our hospital and we spent another week in the hospital and a week in rehab.
The 1p/19q deletion test results came back negative, ie. not in her favor. With this new information and their diagnosis of GBM IV we were faced with an uncertain future. Two years earlier her younger brother lost his battle with GBM IV after eight months. One heck of a coincidence for sure.
She completed six weeks of Temodar and 40 radiation treatments concurrently. After a month her baseline MRI showed no new growth and she began the 5/23 high dose Temodar regimen. She just completed the 3rd cycle which was delayed two weeks due to a low platelet count.
Due to her speech difficulties and short term memory issues she was deemed permanently disabled. We applied for SS disability based on her initial dx and was approved quite quickly. There was a five month waiting period. She also qualified for long term disability through her employer after 90 days. I had started a new job ten months prior to her dx and to make a long story short, I was let go for missing too much work.
My hope is to use the Cancer Compass board for emotional support and to update my story as it unfolds. I look forward to making new friends and hearing from you!
by never-too-late on Mon Jun 25, 2012 03:19 AM
Dear Bill; Your story is heartbreaking....thank God your wife was able to get SSI....my husband was diagnosed in July 1st that he had stage 4 cancer with no chance of recovery,,,we applied for SSI but tragically he passed away 12/23/2011 and I recieved his acceptance letter 3 days later saying he was approved....I too lost my job as a manager in Long term care due to needing to be home to care for him....was denied unemployment in my state due to the fact I was unable to have ajob at that time...after he passed then i was approved...our system is messed up....I pray that you will find a good job that pay you well and that your wife recovers. Stay strong.
by distancerunner on Mon Jun 25, 2012 03:47 AM
Start getting back into your old hobbies again for stress relief....
After the tens of thousands of dollars paid out of pocket for 3 years, I decided to have fun with alot of the money I had squiirelled away for wasted medical trips.
200 dollar box seat tickets at a MLB game or put it away for future medical things?....No brainer here (pardon the pun)
It's a long trip ,, if the memory goes get ready to pay a bunch of money for baby sitting services and adult day care services while you are out releasing stress.
I try to stay within my wifes disability payments, but you will find that it is way worth it to go beyond that budget to go out and enjoy yourself for a day.
One good days worth of fun away from home while your loved one is being taken care of by a good professional sitter and you'll be able to cope with everything else that is going on.
by cpcollege05 on Mon Jun 25, 2012 04:45 AM
I totally agree with ur thoughts on getting out of the house. Although many people think we should be home and with our loved ones all the time. Most dont relieze what the cancer does to us love ones. Its nice to beable to forget about the stress of having to care for a loved one for the day even if it is just going to the mall or going to a baseball game. In order for us caregivers to help heal our love ones we need to be strong and not stressed out. And if the tables where turned i wouldnt want my illness to bring down the rest of my family. Id want them to live life to the fullest even if i couldnt.
by bill1958 on Wed Jun 27, 2012 06:30 PM
Never-too-Late: Thanks for your words of encouragement. I'm sorry for your loss and hope that you too can stay strong!
I have resumed going to the gym and re-started my Spinning (indoor cycling) classes. I also hope to get reaquainted with my photography interests (and classes)....tho I'm finding it's tough concentrating on things right now.
Thanks everyone for your words of encouragement.
by bill1958 on Sun May 26, 2013 11:03 PM
It has been almost a year since I posted Our Story. My wife is 18 months out from GBM IV dx now. In March she completed the 12th and final round of 5/23 Temodar treatments and has an MRI every two months. The MRIs have been unchanged thus far.
The past year has been great: we welcomed our 5th grandchild and were able to cross off several items from her "Aspiration List".
In the past six weeks I/we noticed a distinct change in her cognition, balance, and speech. Her last hospitalization was in February for seizures and she never really bounced back from that. Her next MRI is June 6th and we are both concerned there may be regrowth. We are hoping the issues that have surfaced are med related and are hoping for the best. Please keep her in your thoughts!
by jon4156 on Mon May 27, 2013 12:51 PM
Are you seeing Dr. Fadul?
by bill1958 on Mon May 27, 2013 01:32 PM
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