Her blog was created on Sept 19, 2005. This is the first few paragraphs – “Tuesday, September 13, 2005, Annabelle was
diagnosed with a brain stem glioblastoma. Because of the location of the tumor
they will not operate on it….Tomorrow morning we have an
appointment with the Radiation Oncologist, and they will take Annabelle through
a "simulation". They will mark her head so that the radiation hits in
the same location each time….We are confident that God is in control and we are
overwhelmed with the love and support that have already been poured over us.”
This
is the most recent blog posted on Dec 23, 2011 “... Here we are at Christmas
time, six years and three months after Annabelle's diagnosis. WOW!! We had
quite a scare back in June with some enhancement on the MRI, Drs. now think it
is perhaps a resorption of scar tissue. Whatever it is - God is in the miracle
business and we are daily humbled by his grace and power. What HE has shown us
through our precious Annabelle's life is proof positive that HE is in control
of our everything. Merry Christmas to All!”
Friday, February 3, 2012
Another Inspiring Story - Annabelle Crowson
E
Wednesday, February 1, 2012
Iressa (ZD1839)
“While the nature of cancer is complex, scientists believe cancer begins and spreads through growth factors which prompt improper cell duplication. The epidermal growth factor (EGF) is one of the stimuli to this cell duplication. The process begins when EGF connects to a receptor (EGFR). By preventing this connection, Iressa aims to show the cancer process and has shown promising results in some clinical trials for non-small cell lung cancer .”
“Many believed that combining Iressa with chemotherapy would become the standard treatment. Since Iressa's side effects are generally limited, it was hoped the drug could be added to standard chemotherapy to create a powerful drug combination to fight lung cancer for non-small cell lung cancer, and perhaps other diseases.”
Complete report “IRESSA (ZD1839) REVIEW and EPIDERMAL GROWTH FACTOR INHIBITORS” at http://www.lungcancerclaims.com/iressaold.htm
Other information on Iressa:
http://cancerres.aacrjournals.org/content/62/20/5749.long
aliotta.com “DIPG Family Help” section listed “two children who are doing well on Iressa (aka gefitinib, ZD1839).”
Dasia Atkinson - Diagnosed 03/23/2005. Dasia showed significant tumor shrinkage and continues to do well.
Aidan Zaugg - Diagnosed 04/14/2006. In summer 2008, Aidan's tumor returned and Aidan continued the battle, though his tumor was held off for nearly two years from diagnosis, w/ totally symptom free.
Dasia’s Inspiring Story - Almost 7 Years Now
Dasia was diagnosed with DIGP on Mar. 23, 2005, @ the age of 7. She had an immediate surgery to release fluids trapped in the brain by the tumor. “...During that hospital stay our doctors told us all the details of the tumor, that there is very little they can do and that there was only a 6-12 month life span on Dasia's life”. After Dasia had completed her six weeks of radiation and was still on her chemotherapy called ZD1839(Iressa), her first MRI after the radioation (June 7, 2005 ) showed her tumor shrunk to the point that it was very hard to find, or as the doctors labeled it as "a significant decrease".
The journal was started on March 16, 2007, two years after the diagnosis. “...Dasia is going into her 3rd year of treatment on the same chemo (Iressa) and she has had no sideffects and is doing great.”... Jan. 30, 2008 “I just spoke with the doctors and there advice is to take Dasia off all medications. Dasia was off chemo!"... Last update on Jan.30, 2012 “Dasia's scans came back clear, with no new changes!!!! Praise God”. Dasia is currently doing great with her normal school life.
Read Dasia’s Journal at http://www.caringbridge.org/visit/dasiaatkinson/journal.
Read Dasia’s Journal at http://www.caringbridge.org/visit/dasiaatkinson/journal.
Tuesday, January 31, 2012
Cici's Status - From family (1/13-1/18)
1/18 (Wed) – Confirm of the treatment plan
Before our 2pm appointment, the pediatric oncologist, radiation oncologist and neurosurgery have had a 1pm conference call to go over my daughter’s diagnosis. Cici has been diagnosed as Diffuse Intrinsic Pontine Glioma (DIPG). It is a rare and yet deadliest tumor almost exclusively find in children between age 5-10. In average, it represents about 10% (200 cases) of all brain tumors diagnosed among children each year in the US. The treatment plan is pretty standardized as there is no much of breakthrough in the past 30 years. It was agreed to combine radiation with chemotherapy. The pediatric oncologist explained to us that radiation normally has been very effective to control the tumor. However it is highly likely that the tumor will fall back after a few months. They have been trying to introduce different medicine to the chemotherapy. In the past 4 years, there are 2 out of 8 children survived over two years.
Before our 2pm appointment, the pediatric oncologist, radiation oncologist and neurosurgery have had a 1pm conference call to go over my daughter’s diagnosis. Cici has been diagnosed as Diffuse Intrinsic Pontine Glioma (DIPG). It is a rare and yet deadliest tumor almost exclusively find in children between age 5-10. In average, it represents about 10% (200 cases) of all brain tumors diagnosed among children each year in the US. The treatment plan is pretty standardized as there is no much of breakthrough in the past 30 years. It was agreed to combine radiation with chemotherapy. The pediatric oncologist explained to us that radiation normally has been very effective to control the tumor. However it is highly likely that the tumor will fall back after a few months. They have been trying to introduce different medicine to the chemotherapy. In the past 4 years, there are 2 out of 8 children survived over two years.
1/17 (Tue) – MRI
The MRI was scheduled at 11am at Children’s Healthcare of Atlanta at Scottish Rite. After one hour of picture taking. The neuro specialist called us to go back to his office immediately as he has received the MRI images and would like to discuss it with us in person. In his office, doctor emphasized 7-8 times “this is serious” in a short 30 minutes conversation. We know now our daughter has a brain tumor that is located right insider her brain stem. The doctor showed us the MRI image and point to us where the tumor located. It was about the size of a small lemon as the doctor put it. The doctor said he will arrange us to see the pediatric oncologist, radiation oncologist, and the neurosurgery tomorrow.
1/16 (Mon) – visiting the neuro specialist
At the request of the pediatric, we were arranged as a walk-in patient to the neuro specialist in this Monday afternoon. The doctor and the RN examined her and draw conclusion that she has something going on in her brain. It can be as simple as some kind of infection or as serious as brain tumor. Therefore the doctor arranged for next day MRI at whenever and whichever medical center is available.
1/13 (Fri) – Check up with family pediatric
Cici has been complaining about dizziness for about a month. She felt dizziness normally when she perform some of the ballet posture such as lift her head up while lying on her stomach. In the past two weeks she walked strangely as if she cannot coordinate her legs and tripped very often. She complained about blurry vision. She get car sick easily and vomit a couple of times in the past week. Therefore we took her to see the pediatric thinking there may be something wrong with her neck or spine. Pediatric couldn’t find any major issue with her but did agree to refer her to the neuro specialist.
Monday, January 30, 2012
Aliotta Family
This is a website about Aliotta Family www.aliotta.com. Their son Simon Aliotta was diagnosed w/ DIPG on 12/26/06. The father recorded the journey and their stories along the way….
In the section of DIPG Family Help: “…This section was written for parents of DIPG children. We have no qualifications except our time researching and talking to doctors about Simon. We write this section --- not for you to believe us --- but to provide you with enough background so that you can ask intelligent questions of the doctors…”
In the section of DIPG Family Help: “…This section was written for parents of DIPG children. We have no qualifications except our time researching and talking to doctors about Simon. We write this section --- not for you to believe us --- but to provide you with enough background so that you can ask intelligent questions of the doctors…”
Doctors/Medical Facilities Recommendations (Last Update: 1/31)
Message 6: Info Received on Top-RankedPediatric Hospitals for Cancer Also recommended St. Jude Children’s Research Hospital. It has proton
therapy, best radiation technology for kids
Message 5: 校友的好朋友现年47岁左右，于10年前患脑癌，随后在Duke大学医学院治疗，目前情况很稳定。Dr. Henry S Friedman, Brain Tumor Center at Duke University Medical Center. 919-684-8722 (Office) 919-684-5301 (General umber) 919-668-7600 (Center’s general number) . Temozolomide (TEMODAR) 替莫唑胺 这是他用的化疗药。
Message 4: Recommended Dr. Takanori Fukushima, a world renowned Neurosurgeon. Dr. Fukushima's web link: http://www.carolinaneuroscience.com/index.htm
Message 3: ...According to Adam, Dr. Wisoff is the most experienced pediatric surgeon he knows of who deals with brain tumors. Here is his information.
Message 2: I did some literature search on Gamma Knife ®treatment for brain tumor a couple of years back. Yes, it's a relatively new treatment option but the outcome all depends on the nature of the tumor. If it's small and located in a region not critical and clearly localized, the outcome should be good. Otherwise, it may be hard to say.
Message 1: 这是个不好治疗的肿瘤。放疗为主，化疗效果不肯定。还是要听从孩子医疗小组的建议。可考虑去 Mayo, Cleveland Clinic, Dana Farber, UT M.D. Anderson Cancer Center for second opinion. U of Pittsburg has strong Gamma Knife ® program. 祝好。
同济医学院海外校友会 校友 Message 1, 2, 5
Message 5: 校友的好朋友现年47岁左右，于10年前患脑癌，随后在Duke大学医学院治疗，目前情况很稳定。Dr. Henry S Friedman, Brain Tumor Center at Duke University Medical Center. 919-684-8722 (Office) 919-684-5301 (General umber) 919-668-7600 (Center’s general number) . Temozolomide (TEMODAR) 替莫唑胺 这是他用的化疗药。
Message 4: Recommended Dr. Takanori Fukushima, a world renowned Neurosurgeon. Dr. Fukushima's web link: http://www.carolinaneuroscience.com/index.htm
Message 3: ...According to Adam, Dr. Wisoff is the most experienced pediatric surgeon he knows of who deals with brain tumors. Here is his information.
Message 2: I did some literature search on Gamma Knife ®treatment for brain tumor a couple of years back. Yes, it's a relatively new treatment option but the outcome all depends on the nature of the tumor. If it's small and located in a region not critical and clearly localized, the outcome should be good. Otherwise, it may be hard to say.
Message 1: 这是个不好治疗的肿瘤。放疗为主，化疗效果不肯定。还是要听从孩子医疗小组的建议。可考虑去 Mayo, Cleveland Clinic, Dana Farber, UT M.D. Anderson Cancer Center for second opinion. U of Pittsburg has strong Gamma Knife ® program. 祝好。
同济医学院海外校友会 校友 Message 1, 2, 5
Sunday, January 29, 2012
北京天坛医院神经外科主任医师江涛大夫回复
在好大夫网上北京天坛医院神经外科胶质瘤排名第一的主任医师江涛大夫看了MRI片子后，回复了我们的网上咨询，结论是一致的。不建议手术，“也无法彻底切除，可以考虑放化疗。”对于有何国内或国际的实验性治疗（Clinical Trials)， 或者中医的结合治疗建议， 江大夫的回复是 “目前针对脑干胶质瘤有效的药物不多。最常见的治疗手段即是放疗，可以联合替莫唑胺辅助化疗，也有患者有不错的效果。中药这块，个人觉得不可靠。”
Of course, this feedback is for general information purpose and not a recommendation for the treatment, which requires much more diagnosis.
江涛大夫简介
替莫唑胺胶囊
替莫唑胺胶囊（蒂清）是治疗脑胶质瘤的口服胶囊制剂，针对性强、特异性高，可透过血脑屏障，用于治疗脑胶质瘤及转移瘤。两年多的临床观察及研究工作显示，蒂清替莫唑胺胶囊治疗脑胶质瘤效果显著，同时具有延长生存时间、提高生存质量的作用，是治疗脑胶质瘤，特别是多形性胶质母细胞瘤或间变性星形细胞瘤的一线用药。
蒂清替莫唑胺胶囊（temozolomide）是一种新型的口服二代烷化剂-咪唑四嗪类衍生物，口服后迅速吸收，具有近100%的生物利用度及广谱的抗肿瘤活性。蒂清进入体内不经肝脏代谢广泛分布于全身，并可透过血脑屏障，进入脑脊液；在中枢神经系统达到有效的药物浓度。
Temozolomide - (brand names Temodar and Temodal) is an oral alkylating agent used for the treatment of Grade IV astrocytoma — an aggressive brain tumor, also known as glioblastoma multiforme — as well as for treating melanoma, a form of skin cancer. Temozolomide is also indicated for relapsed Grade III Anaplastic Astrocytoma and not indicated for, but as of 2011[update] used to treat oligodendroglioma brain tumors in some countries, replacing the older (and less well-tolerated) PCV (Procarbazine-Lomustine-Vincristine) regimen.
Side-effects - The most common non-hematological adverse effects associated with temozolomide - nausea and vomiting. For more information: https://www.navigatingcancer.com/chemotherapy_drugs/temozolomide
Clinical trial on Temozolomide Chemotherapy (completed) - see detail at: http://clinicaltrials.gov/ct2/show/study/NCT00392171?sect=X6015
Saturday, January 28, 2012
Gene Therapy @ Children Hospital Boston
You may already see this one. I just want to let you know gene therapy does exist. It is a phase I trial, (in general, small number of subject, proof of science), and it is far from here (Boston). I believe it is promising if it targets well. We need the more advanced science and technology to help the DIPG patients. It occurs in Children Hospital Boston.
In 3rd paragraph "A second trial for newly diagnosed malignant gliomas is a Phase I gene therapy immunotherapy trial combined with radiation therapy and temozolomide. This combination is toxic to malignant glioma cells and thus stops their growth. More importantly, it can induce an immune response to malignant cells located outside of the tumor's primary site, thus targeting the infiltrative boundary of the tumor that typically results in recurrence...."
In 3rd paragraph "A second trial for newly diagnosed malignant gliomas is a Phase I gene therapy immunotherapy trial combined with radiation therapy and temozolomide. This combination is toxic to malignant glioma cells and thus stops their growth. More importantly, it can induce an immune response to malignant cells located outside of the tumor's primary site, thus targeting the infiltrative boundary of the tumor that typically results in recurrence...."
"Family Support" section on PBTF Website
We found the “Family Support" section on Pediatric
Brain Tumor Foundation website is very helpful to DIPG parents. It provides
parents with lots of useful and practical infomation, including the basic understanding on the diagnose, treatments, selecting clinical trials, school re-entry after
treatment, help other children in the family and many more. Many of them are online audio.
Friday, January 27, 2012
Complete remission of a DIPG w/o Conventional Medical Treatment
Several responses from different channels reference to the report “Complete remission of a DIPG w/o Conventional Medical Treatment” (Source: Lenard HG, Engelbrecht V, Janssen G, Wechsler W, Tautz C. Department of Paediatrics, University of Düsseldorf, Germany)
Message “ …这个小孩是在 2 岁的时候诊断的，在 6 岁半的时候 MRI 检查肿瘤看不见了...就是想给你一些希望,千万不要放弃,有时候奇迹会出现的!!!”. Detail report can be found on this website.
After research, we confirmed that the report is accurate. This report was published on Neuropediatrics (1998 Dec;29(6):328-30) and the abstract is also posted at PubMed.gov. This is a website of US National Library of Medicine, a division of NIH (National Institutes of Health). The same entity also manages the Clinical Trials Registry. Click Here for the report abstract on PubMed.gov.
After research, we confirmed that the report is accurate. This report was published on Neuropediatrics (1998 Dec;29(6):328-30) and the abstract is also posted at PubMed.gov. This is a website of US National Library of Medicine, a division of NIH (National Institutes of Health). The same entity also manages the Clinical Trials Registry. Click Here for the report abstract on PubMed.gov.