Caring Message

Info received about 美国阿尔尼拉姆生物技术公司, 核糖核酸干扰(RNAi)疗法 ALN-VSP.

Further search found the pharmaceutical company Alnylam and multiple reports (1, 2, 3, 4) on positive results from ALN-VSP treatment on primary or secondary liver cancer, though no report found on related treatment for glioma or DIPG.

Cici's Status - From family (2/15 - 2/24)

2/24 (Fri) – Blood test qualified

Dr. Watkins called and notified us that the blood result of Cici was satisfactory to U of Pittsburg. Therefore she is qualified to attend the clinical trial known as “Immunotherapy for Childhood Gliomas”. Here is the detail of the trial:

• “A vaccine made from small proteins specific to gliomas will be given in combination with an experimental drug called Poly-ICLC, which boosts the immune system. Both will be given by subcutaneous injections at 3-week intervals for the first 24 weeks. Responding patients may continue receiving vaccines every 6 weeks for up to 2 years. Physical examinations, blood testing, and MRI scans will be performed periodically.”

But I don’t think Cici would be overly excited about this. She strongly believe God will save her without too much effort from human (doctors, parents and the like). She accused us for lack of faith in God by seeking help from doctors. Therefore she refuses to take any food (or medicine) that makes her uncomfortable.  
 2/22 (Wed) – Blood test for clinical trail

Our doctors referred us to attend a clinical trial organized by University of Pittsburg. Today is for Cici to leave blood sample for U of Pittsburg to check if she is qualified. They are looking for patients that contain the HLA-A2 tissue type. Cici was reluctant to cooperate when the nurse came to draw her blood. This is partly because she is scared of the needle, but mostly because she has fed up with the endless day-to-day doctors’ appointment and analysis. She has been a nice and sweet girl who was patiently waiting for her savior for 5 weeks. Now her impatience and frustration started to appear. She refused to eat dinner tonight as a punishment for our forcing her to take blood test today. She has not been eating fruit or drinking water very well lately because of her frustration.


2/15 (Wed) – Back to school

Start from last Friday, Cici is going back to school for 4 hours a day. It had definitely helped to boost her spirit. She like to be treated as a normal girl and live a normal live. We have a conversation with the corresponding school teachers and counselors this morning to go over Cici’s situation, so that the school officials know how to take care of her. The school will also assign a home bound teacher to help Cici to catch up. She also needs to make up enough school hours in order to advance into G5 next year. Cici works very hard to keep up with the class assignments. We sometimes have to force her to take a break and sleep. But most of the time we let her finish what she is doing because apparently catching up with homework is what she enjoyed.

Caring Messages

Message 1: "...[DIPG] at a crossroad...Whatever you decide to do will be perfect, as all your decisions for your child are made with love ..."

Message 2:  "...I am not sure it wil help you guys researches or not, but still decide to attach this long reading here just in case..."

Message 3: Eat to Defeat Cancer: http://www.eattodefeat.org/food

Homeopathic Remedies

A blog by a DIPG parent mentioned -- Homeopathic Remedies: We give Annabelle Ruta Graveolens 6c and Calcarea Phosphorica 3x. .. Dr. Warren (the NIH in Bethesda, Maryland) is telling other patients about this. She says, "It can't hurt!".
http://www.caringbridge.org/visit/annabelle/mystory

From initial research, we found Ruta Graveolens 6c is available and not expensive. It is made from using the fully concentrated and undiluted version of Ruta graveolens and diluted it 10,000,000 times (100 is represented by the Roman Numeral C, so 100x dilution gets 1C, and additional 10x dilution adds 1C to get 2C, so on and so forth).

Another DIPG parent mentioned "...Ruta 30c and we also used Calcium Forsade..." Ruta 30c is a much lighter version (i.e concentration diluted 10 ^ 31 = 10E31 times)
http://www.cancercompass.com/message-board/message/all,19312,1.htm?mid=433012

Ruta-6 group: http://groups.yahoo.com/group/ruta6
Another supplements group: http://groups.yahoo.com/group/btsupplements

Also found a webpage in Turkish regarding Ruta Graveolens. The following text is obtained by using Google Translator, while some  can be understood, the others don’t much sense because of the poor translation. On the bottom of the page (before comments), there’re a few links for references. 

"..Ruta 6c (Ruta graveolens 6c) and Calc phos (Calcarea Phosphorica 3x) 's homeopathic medicines developed by Indian doctors, Prasant and Pratip Banerji brain tumor drugs. Indian doctors in their study of 257 patients treated with this drug can be factored 2sinin also say that every third patient. Otto was put forward by the German physician Hahnemann Homeopathy active ingredient diluted drugs. According to the theory of some chemicals in the body even in very diluted, but show the same therapeutic effect when given in high doses impair the functioning of the body. Thus, any active ingredient homeopathic drugs, according to a normal level by using trace is diluted several times. Many scientists skeptical about this. Whether they really impact the way homeopathic medicines are a serious debate. Homeopathic remedies, none of this, said to be effective in treating severe major role in being supported by experimental data. Dr. Banerji'nin the situation is slightly different for the drugs developed. Dr. Banerji, such as a drug undergoing clinical trials for these drugs hold any of these results, other scientists presented review. Ruta graveolens, Turkish, Latin name is the name given to plants with rue. Since ancient times, plant a garden and a folk remedy used against many diseases. Facilitating effects of digestion, perspiration, be considered to reduce the worm, observed feature of antiseptic. Used during pregnancy can cause the child to fall. In addition, taking high doses of intestinal inflammation, renal failure and lead poisoning. Unwanted pregnancies, especially in Uruguay, this plant has been used in the literature. The reports of all young women who drink this plant has been dead to the hospital the next day sevkedildiklerinin. Rue, a plant which is popular among homeopaths. Dr. Ruta graveolens 6c Banerji'nin developed in a dilute solution of this plant"

中西结合治疗脑胶质瘤数据集 （7）

发表于江苏中医药，2002年，第23卷 第8期
http://www.jdzhongyi.com/zyyy/News_View.asp?NewsID=642

Abstract 提要 对近10余年来中医及中西医结合治疗胶质瘤的研究进展，从中医病因病机认识、中医辨证分型论治、中医专方治疗、中西医结合治疗等4方面进行了综述，并就今后的研究工作提出了问题，提出了建议。

Section -- 中医专方治疗
"...杨炳奎等［5］以祛瘀、消肿、散结立意自制平瘤合剂治疗胶质瘤术后复发的病例，主要药物有蛇六谷、天龙、水蛭、川芎、三棱、莪术、昆布、夏枯草等，共观察了46例，结果CR3例，PR30例，NC9例，PD4例，总有效率达72％。五年的生存率达32.2％，对比其治疗前后的NK细胞活性、TNF、PR、ERFR、LTR，结果发现治疗后有明显提高(P<0.01)。李文海等［9］用脑瘤消方治疗颅内肿瘤36例(其中胶质瘤18例），结果治愈9例，显效15例，稳定11例，无效1例，药物组成是金银花、连翘、蒲公英、莪术、夏枯草、三棱、白花蛇舌草、猪苓、牡蛎、半枝莲、瓜蒌、水蛭、蜈蚣等。唐由君［1］从补脾益气、滋肾利水入手治疗42例胶质瘤，总有效率达85.1%。宋慕玲等［12］用中药复方抗瘤粉（主要成分是半边莲、白花蛇舌草等）治疗脑胶质瘤47例，治愈5例，显效11例，好转16例，无效及死亡15例，总有效率68%。祝瑞德［13］根据辨证施治的原则用通腑泄浊、行瘀破积法治疗一昏迷的基底节颞顶部胶质瘤患者，方宗桃核承气合涤痰汤加减，病人在泻下大量恶臭便后神志渐转清醒，二个月后肢体功能恢复正常，随访1年半病情稳定。张锡君［14］将脑胶质瘤（术后）的病人分为肝风与痰浊两型，用熄风涤痰、活血化瘀、益气养血的颅复丸、散结丸及温胆汤加减治疗20例病人，显效8例、有效5例、无效7例，经脑核素扫描、CT检查比较及随访后，作者认为肿瘤部位在额叶及病理分级在1-2级者其生存率较高..."

Total of 12 articles with the topic "中西结合治疗脑胶质瘤数据集" can be found at:  http://www.jdzhongyi.com/zyyy/news_more.asp?lm2=89 

Cici's Prayer

Cici learned writing her prayer letter in Sunday school this past Sunday.

Caring messages:

Message 1: I was Cici's (and Ern's) teacher and have recently heard about what she is going through.  Please let B/N and the whole family know they are in my prayers.  I wish them strength and comfort as Cici receives her treatment and tries to heal from this.  With love, Denise H (Nesbit Ferry Montessori)

Message 2: Info forwarded from Sherry (Director of Patient & Family Services, Brain Tumor Foundation for Children, Inc) -- Family will receive a care package from BTF; Please talk to social worker Susan (at Scottish Rite) about financial assistance if needed, and contact Sherry if interested in connecting to other patient families.

Cici's Status - From family (1/19 - 2/1)

2/1 (Wed) – Good appetite

We went back to the Pediatric Oncology for routine checkup. Dr. Mazewski  and Dr. Watkins were excited about Cici’s improvement. However, Dr. Mazewski also pointed out that Cici’s symptom were not as severe as other kids with tumor of the same size. Cici’s improvement is exceeding expectation but not exceptionally outstanding.

One of the side effects of taking Decordron (the steroid) is the big appetite. Cici is constantly in the good mood to eat. She wakes up at 7am everyday to look for food and eats 5-6 full meals a day. But right now that seems to be a good problem to have. As long as she has regular bowl movement, we will let her eat as much as she wants. We try to avoid excessive meat and tend to feed her with veggie and fruit (mixed fresh berries, grape, and pear) and PowerAde. She love Chinese dumpling (JiaoZi and BaoZi). Thanks for God’s love, brothers and sisters at our church have been delivering food (dinner and fresh fruit) to our front door 2-3 times a week. 

1/27 (Fri) – Feeling better

Cici only vomited once in the morning as oppose to 5-6 times yesterday. She is clearly doing a lot better in the afternoon. Radiation has been proven to be effective to treat DIPG. But the positive effect normally will not start to appear until 2-3 weeks of radiation. For Cici, her tumor reacts to the radiation faster than doctors had expected and therefore her symptoms were mitigated dramatically.

1/25 (Wed) – Constipation

Cici hasn’t have bowl movement since last Monday. Her tummy was so rigid that she cannot eat anything without vomiting. The doctors at the Radiation Center prescribed Laxative for her to use. After application, Cici felt much better. Her strength and appetite has recovered a lot during dinner time.

1/23 (Mon) – First Radiation

Today is the first day of the scheduled radiation treatment. Cici was very nerves. She vomited in the car as we drove around the parking deck of Winship Cancer Center.  When the nurse put on the mask for her, she tightly held on her mother’s hand until the nurse find a stuffed teddy bear for her to grab.

 

1/22 (Sun) – After all is set to go

On Friday we start to feed Cici with the steroid (Decordron) and drug that control nausea. She is feeling better but still weak. Church pastor and elders come to visit us Friday night and we pray together for God’s mercy. Just like our friend’s 7 year old son puts it “When I shot basketball, do you know what happen after the ball left my hand? It is in God’s hand!”. Lord, we’ve done all that we can, now we rest as we should and wait for your mighty hand to compose the miracle.

1/19 (Thur) – Meet with the Radiation Oncologist

This morning, we went to Emory Hospital’s Winship Cancer Center to meet with our Radiation Oncologist, Dr. Natia Esiashvili. They have Cici's radiation mask done today. The mask is made of plastic that shaped according to patient’s facial structure. It is to lock the patient’s head on the radiation board so that the laser gun can precisely focus on the target spot each time as it goes.

Cici's Status - From family (1/13-1/18)

Prayer

A group of local and online Christian friends started an organized prayer effort every night at 10pm ET, to pray for Cici and her family. Please join this prayer effort in any way you can.   

MD. & Medical Facility Recommendation

The two people we would recommend are --
Michelle Monje at Stanford And Roger Packard at DC Children's

Michelle is also a  personal friend of the email sender. The sender would be happy to pass the patient family’s info to Michelle so she would know who is calling her and why. Please contact us for the sender’s info if needed.

Another Inspiring Story - Annabelle Crowson

Essentially, Annabelle is a happy, normal girl who turned 8 in February 2011. She was diagnosed with DIPG in September 2005. She is an absolute walking miracle. And this is her Journal and her story.

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!”

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://www.aboutcancer.com/iressa.htm

http://cancerres.aacrjournals.org/content/62/20/5749.long

Iressa Trial Status (as of 10-20-07)

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.

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