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.

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.

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…”

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

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

http://www.bjtth.org/Doctor/Default/Index.aspx?pid=114

http://www.haodf.com/tuijian/DE4raCNSz6OYw20RBSRSxBFl/DE4raCNSz6OlSIjVGEjdcGNQ/jiaozhiliu.htm

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。

http://baike.baidu.com/view/1746012.htm

http://www.xinyao.com.cn/diqing/diqing.htm

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

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...."

"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.  

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.

Radiation Therapy Side Effects

Many people who get radiation therapy have skin changes and some fatigue. Other side effects depend on the part of your body being treated. For brain tumor radiation therapy, we should focus on managing the following side effects. Most of these side effects are expected to appear after one month and may last up to 12 months. So understanding brain radiation therapy sides effects and being prepared to manage they is very important to take care our little angel. http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page7

Fatigue

Fatigue from radiation therapy can range from a mild to an extreme feeling of being tired. Many people describe fatigue as feeling weak, weary, worn out, heavy, or slow. See the link for details.

Nausea and Vomiting

Brain radiation therapy can cause nausea, vomiting, or both. Nausea is when you feel sick to your stomach and feel like you are going to throw up. Vomiting is when you throw up food and fluids. You may also have dry heaves, which happen when your body tries to vomit even though your stomach is empty. See the link for details

Skin Changes

Brain radiation therapy can cause skin changes in your treatment area. Here are some common skin changes: See the link for details.

Hair Loss

Hair loss (also called alopecia) is when some or all of your hair falls out. See the link for details.

Gamma Knife® Surgery

Info received on the treatment w/ “新一代高智能伽码刀” in one of the hospitals in China. Further search/study found “伽码刀 = Gamma Knife®”. 

Initial search found the following info: Gamma Knife® surgery is recognized worldwide as the preferred treatment for brain tumors, arteriovenous malformations and brain dysfunctions such as trigeminal neuralgia. It is supported by over 2,500 peer reviewed research articles that are primarily published in neurosurgery journals. More Info on IRSA® (International RadioSurgery Association) website, which also has the listing of the local facility around the world using this technology.

Further search found the usage of this technology on Gliomas  (the ‘G’ in DIPG) reported at Gamma Knife Surgery website. But it does indicat that most of the brain stem tumors (such as ‘PG’) cannot be surgically removed. Summary “..Several different treatments may be used to treat gliomas.  The decision for treatment is dependent upon many factors including the size of the tumor, its growth rate, and the symptoms produced by the tumor.  In addition, the patient’s health and physical status may also affect the treatment process.  Tumors may be treated with surgery, with chemotherapy, with radiation, or a combination of all of these.

Current Help Tpoic (Last Update Jan 28)

我有一个食疗治便秘的方法，用苦瓜炖排骨，喝汤就行，让小宝贝试试吧。如果方便的话，我可以做好给你送去 (WL)

版主(host): 也想借这个平台询问一下, 有谁知道如何帮助在 放射/化疗 中的患者减少副作用 (如呕吐等) -- 以 非医药/非侵入性  (non-medical, non-invasive ) 的方法. 谢谢!

Update 1: Infomation found via research on Nation Cancer Institute website, see blog "Radiation Therapy Side Effects" posted Jan 26 @ 11:03am

Update 2: The topic "Effect of Acupuncture on Cancer Treatment–related Side Effects" is also published on another page at Nation Cancer Institute website ClickHere. This invasive approach deals with these side effects at more severe level and probably not for our Cici at current time. More detail on file.

Update 3. 食疗应该因人而异。A的补药不一定适合B，而B的补药也不一定适合A。要先辨证，适合病人情况就可以吃。

Clinical Trials for the Newly Diagnosed Child with DIPG -- Summary

A review of www.clinicaltrials.gov was done on October 20, 2011 to identify which therapeutic trials are currently listed as open for the newly diagnosed child with DIPG. The following is information on the ten (10) listed trials that were listed as accruing patients as well as one vaccine trial that is yet to open. Contact information is listed at the bottom of each clinical trial site. Most US clinical trials for DIPG can be found with the key word "pontine glioma" but some are still listed under "brainstem glioma". More Info: http://www.cristianriverafoundation.org/clinical.html

The "The Pediatric Brain Tumor Foundation" website is very helpful for DIPG parents. It provides parents with a basic understanding of the steps involved in participating in a clinical trial. Link: http://www.pbtfus.org/families/support/ipsic/clinical-trials.html

Clinical Trail “CDX-110” (updated, re-post)

A few days ago, we received info on clinical trial drug "CDX-110". Further search on ClinicalTrials.gov filtered out the rest and yield one result, list as Item #5 on the page. Title - Phase I Rindopepimut After Conventional Radiation in Children w/ DIPG. Contact: Paul Fisher, MD, Stanford University. (650)721-5889 pfisher@stanford.edu

Why Not Aidan?

Aidan "Tators" Zaugg is a charismatic 7 year old boy residing in Richland Washington. On Friday April 14th 2006, as a 4 year old, Aidan's life was changed forever when he was diagnosed with DIPG…. While these statistics are unusually dire, Aidan's family believes these are the cancer's statistics and not Aidan's. They know that miracles happen every day, so they are asking..."Why Not Aidan?"…. With the spiritual, medical, and financial support of many, they believe they will see Aidan learning at our schools, playing baseball in our parks….. Believing our God expects us to put ourselves in a position to receive his miracles, Aidan underwent radiation therapy at the University of Washington Hospital in Seattle Washington and enrolled in a Clinical Trial under the supervision of Dr. Russell Geyer at Seattle's Childrens Hospital.  …  With these efforts and a multitude of support and prayer for Aidan’s wellbeing, Aidan steadily improved, his tumor remained rock solid stable, and for over two full years he managed to live his life totally symptom free…

Read the full story at http://www.whynotaidan.com

Cornell Univeristy Clinical Trial

Info Received about Cornell Univeristy Clinical Trial. More research needed on this site:   
http://www.cornellneurosurgery.org/pedneuro/dipg-news.html

Cancer Treatment Reviews (Most Recent Issue: Feb 2012)

Info received Cancer Treatment Reviews 38 (2012) 27–35 "DIPG review clinical trials.pdf" (9pp) Message ".. consulted the neuro surgeon in her hospital and following is what they recommended: Children's Hosptial in Philadephia, which is affliated to U. Penn. The other choices will be Duke and John Hopkins. Hope this will be of some help. But overall the treatment options are pretty much what Emory has outlined. There is not much difference in prognosis. Attached is a latest summary review of past several year's clinical study.."

DIPG Family Binder 2011 and the Moss Report

“DIPG Family Binder 2011” was developed by parents whose child suffered DIPG. It has basic info on DIPG, their stories and reference to “The Moss Report”. It has high-level info on treatments, diets, supporting groups, resource links, etc. In the last section, it has blank charts for recording health, appointments, questions to ask doctor, etc.

The Moss Report is a 472-page handbook with very detailed info on DIPG, analysis on carious treatment options (pp 16-40), Clinical Trials (pp 87-133), Innovative Cancer Clinics around the world -- not including China (pp167-235), food and diet (pp 235-290). It has many useful practical info, such as choosing a clinical trial (p101) and choosing types of organic food (pp 241-247), other food related topic (pp 235+), etc. Other section, such as alternative approaches is more of author's own researches/studies/opinions and sometimes controversy. There're also many different opinions and objections out there.

These two documents in pdf format can be downloaded from http://dipgcommunity.org/?page_id=13. Somehow they both have the same online file name, so make sure to save them w/ different filename when downloading.

北京天坛医院神经外科

目前中国在神经外科特别是脑胶质瘤的外科手术中，特别是脑干部位的，还是北京天坛医院把握大一些。天坛的张俊廷、江涛、林松等医生，华山的胡杰、吴劲松、张义等大夫，手术在国内是比较有名的。中医也有效果不错的，有些名气的比如北京的李源生、山东的李文海等，但中药一是来得慢，二是因患者个体差异大，如果不对中药的症状，效果很不明显。
Info received via a postings on Huaren 网 — 北京天坛医院神经外科 张俊廷 (Beijing Tiantan Hospital affiliated Capital Medical University, Beijing, China)

Additional searches found Dr. 江涛 and other doctors in the same hospital (Neurosurgery). Some have their blog type postings to answer questions from indivudual patient w/ PG or DIPG

http://www.haodf.com/tuijian/DE4raCNSz6OYw20RBSRSxBFl/DE4raCNSz6OlSIjVGEjdcGNQ/jiaozhiliu.htm