Diagnosis: Glioblastoma Multiforme, 2000
Last Updated: 9/12/2003
Hi, my name is Sally DeAngelo. I am 53 years old. I have been married to my wonderful husband Carl for 35 years. I am a mother of 4 and grandmother of 9 and I am so grateful to be alive today. It has been 2 ½ years since I was diagnosed with GBM, grade 4, and I would like to share my story with you that you might find hope.
My spiritual journey
Every day is a gift. I cherish each and every moment with my husband, my children, my grandchildren, my family and friends. I have included a picture of 9 of the reasons why I'd like to stick around. I want to watch these grandchildren grow up and I want to grow old with my husband. I am truly thankful for the medical wonders that have made it possible for me to be here today. I believe that God has been guiding my doctors and giving them wisdom. I pray that what they learn in treating me will help not only me but others who are afflicted with these horrible tumors. God is perfectly able to heal me even without the help of doctors, technology or medicine, but that would only benefit me ! Please pray with me that my experience and the experience of fellow sufferers helps doctors come closer to a cure for malignant brain tumors!
Please know that I am writing this with a very humble, grateful heart today. I know that many times God answers prayers for healing differently than He has so graciously answered mine. I don't pretend to know or understand why. I can only thank Him for all He has done and for the ways He has used this to strengthen my faith and the faith of my family and friends. Pray that I will continue to love Him, honor Him, trust Him and serve Him each day that He gives me the opportunity!
The medical details
In April of 2000 I was diagnosed with a GBM 4 brain tumor and underwent surgery by Dr. Mangiardi at Lenox Hill Hospital in NYC. Following my surgery I underwent 4 months of chemotherapy treatment involving Temodar and CPT-11, and a subsequent 6 weeks of conformal radiation therapy. I then went on a long-term treatment regimen of Temodar and enjoyed 17 months of clear MRI's. I still remember one appointment with my neuro-oncologist, Dr. Glass, when upon reviewing my MRI he said, "it's hard to believe it's the same brain!" Everything was going great.
Then it came back. In September of 2001, the tumor was back, as if out of nowhere. I was ready to keep fighting, but very disappointed. The tumor was causing intense headaches and I was starting to see symptoms progress like difficulty with reading and word retrieval. After much prayer and research I decided to have gamma knife treatment in October 2001. 5 days after the gamma knife treatment, I had a substantial seizure. After a brief hospitalization I was put on Dilantin and an increased dosage of Decadron. Following this seizure I consulted with Dr. Glass and decided to try a round of Carboplatin and Tamoxifen. However, in spite of this, my symptoms of difficult speech, reading and writing continued to worsen at an accelerating rate. In addition, my white blood cell count plummeted, requiring infusions of neupogen. By the end of November Dr. Glass and Dr. Mangiardi agreed that a second surgery was required to remove any residual tumor and necrosis. The surgery went well with no complications.
After the Surgery, I was tired, but I began feeling better. I continued with the carboplatin and occasionally needed neupogen to maintain my white cell count. In January of 2002, I started having symptom progression again and intense headaches. The MRI showed a questionable area that appeared to be active tumor. After consulting with Dr. Glass, we decided to try CPT-11 again, this time with CCNU. By March, my symptoms were stable, but I began having problems with my blood, specifically platelet counts, and I needed to have two platelet infusions and procrit. I had to stop chemo altogether to try and give my blood a chance to recover. My April MRI showed an substantial increase in swelling, which explained the terrible headaches I was having. After discussing it with Dr. Glass, I decided to get a second opinion from Dr. Grossman at John Hopkins, before proceeding with any other treatment. Dr. Grossman carefully reviewed my information, but didn't feel I was a good candidate for any of their current treatment options. He strongly recommended that I see Dr. Fine at the National Cancer Institute (NIH).
At the end of April 2002, I saw Dr. Fine. He had a PET scan done which validated that I did indeed have active tumor, and he asked me to consider a phase I clinical trial he was conducting using CC-5013 (a chemical analog of thalidomide believed to be 1000x more potent). I decided to go for it and every MRI I have had since then has shown decreased swelling and tumor. My September 2002 PET scan showed very little visible live tumor, and mostly necrosis !!. I am continuing this treatment and I continue to thank God for the mercy and grace He has shown me as I battle this terrible disease. It is my hope that you may you also find God's peace in your journey.
In the grip of His grace,
-Sally
10/7/2002
Update 5/7/2003: Sally passed away a few weeks ago. Her family made up a webpage about Sally's journey . . . with the hope that Sally's journey may give hope to others.
Update 9/12/2003: the website was moved to: Click HERE to view that page.
