If you have any medical knowledge of this Syndrome (it's not related to Russells Silver), patients with this disease, knowledge of treatments etc please leave a message here.
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message from: leegarwood@comcast.net
I am a 61 year survivor of a "TERMINAL" whelsms tumor at the top of my lumbar area and I have treated other cancers for many years. I now also treat other ailments, such as heart. eyes, etc. and I seem to have a talent for healing.
Cancer, in any form, can be treated with chapparal, and essiac, providing dietary factors are also regulated. For tumors, I would also use dmso over a pultice of the main herbs to "drive" those herbs directly into the tumor, since dmso is the only substance that penetrates tumors.
If you would care to discuss cancer with me, contact me at 248-879-7788 and maybe I can help.
message from: janine astle
Hi my name is janine and i live in england, i havesilver russle growth syndrome i'm 25 this year and in 2005 i gavebirth to a normal healthy babygirl she wieghed 6lb6oz and is striving very well.
if you would like to talk to me about srs your wellcome to contact me at beanieontoure@hotmail.com
Thanks.
message from: andy foote
Hi,
my 6yr old son has an ependymoma malignant brain tumor. Diagnosed when he was 2 and relapsed twice now with a 10% survival prognosis. Needless to say, i have been researching for a long time and i have come to the following conclusions:
Conventional treatment and doctors only know their limited world, if their treatment doesnt work then they are quick to tell you its all over, they also rubbish the thought of alternate treatments.
Don't accept that. The golden rule is "Always believe, never ever give up, there is a way, just find it"
I have learned how to spot commercially-led alternative treatments and to disregard them. (its tough)
Also, like your condition, ependymomas are quite rare and i have had to look at treatments given to similar brain tumors and ask that our case be considered.
Here are 3 examples:
Photo Dynamic Therapy
Burzynski Clinic (Texas)
Immunotherapy (L.A)
None of these have treated our particular disease but i have opted for the Immunotherapy as a final attempt to secure Joe's (my son) long term survival.
This particular treatment has had a 50% success rate with other tumors.
I have been inspired by your website and i'm gonna change mine to make it accept messages like this just in case there's another treatment out there that i've missed.
My best wishes go to you and remember, keep strong and never ever give up.
my son's website is www.josephfoote.co.uk
kind regards
Andy
message from: Anyonomus
i looked up the definition of russel syndrome-
we will be with you gus! we love you
message from: Kristen
Hang in there! Cassie had a lot of the signs of Russell's Syndrome and was not gaining weight well at all. She was almost 10 pounds at birth and showed little weight gain. She wouldn't gain more than 2 oz. every month or two. Six months after her craniotomy where they removed 60-70% of the tumor, she started to gain weight. She is now 18 pounds and almost 13 months old. It took her several months to gain weight and she has gained almost 9 pounds- most of them in the last 6 months. Chemo has helped her tremendously. They had so many worries before about her eyesight too, but have hope. Have they considered surgery to remove part of the tumor? Cassie's was in the suprasellar area (where Gus's is, I presume) and she needs lots of hormone replacement. The good news is I think she is going to kick this tumor for good. Please feel free to e-mail me- I'm on the pbt website. Love, Kristen- mom to Cassie
message from: Nicola
I have just spoken to a paedatrician on Harley Street via a family friend and talked him through Gus's treatment etc. He was reassuring and said it sounded like the staff in France were doing exactly the right things. However, if you did want a second opinion or to talk to someone about it in the UK the top doc to speak to is Dr Anthony Mikalski who is based at Great Oramond Street. Dr Mikalski is in the oncology dept and is an expert in brain tumours. This link has the contact details http://www.ich.ucl.ac.uk/clinserv/haemonc.htm
message from: Briony
Someone has been talking about a more 'alternative' treatment on a web board I go to.
Protocel (aka Cancell, Cantron, Entelev)
***************************
In the 1930's, the biochemist, James Vincent Sheridan developed Cancell (it was called Entelev then and is sold today as Cantron). Mr. Sheridan came out with the following model of human cells based on the work of two time Nobel Prize winner Otto Warburg. Human cells fall into three states:
- Normal or aerobic meaning that it can survive in a high oxygen environment
- Malignant or anaerobic which have a much lower electrical voltage
- Primitive or the stage in development just after the formation of the cell’s building blocks
Many researchers are attempting to reverse the anaerobic cell and turn it back to an aerobic cell through the use of nutrients or oxygen or other methods. Mr. Sheridan abandoned this approach believing that malignant cells are irreversible. Sheridan developed a chemical substance whose components combine to act synergistically to lower the voltage of the cell structure of the body. In the case of malignant cells which are anaerobic, their voltage is already low. Sheridan's substance lowers its voltage further.
Recognizing the respiratory cycle of a malignant cell, an electrical blockage is created, taking the cell from the malignant state past the primitive state back to the building block stage where the hydrogen bond joining the coils of the protein helix is shifted. Recent studies have shown that the optimum level is to lower the potential by 20%. When these malignant cells go past the primitive state, they lyse or self-digest. When the malignant cells, self-digest, they change from cancer to waste material, composed of two amino acids that have the appearance of raw white eggs, which are mostly excreted through normal body waste disposal. The cancer cells are subsequently replaced with normal oxygen using (aerobic) cells.
******************
I'm not sure if because Gus' tumour is benign this would not be so effective - I need someone medical to tell me if benign cells are also anaerobic...
There seems to be a big story in the US about why the FDA didn't approve this treatment. I'll look into it all more as it sounds quite interesting....
message from: jess shubrook
Here is another. There are 180 research articles on this website www.ncbi.nlm.nib.gov/Pubmed/. Type in diencephalic syndrome pediatrics and click on related articles with the 1 hit it finds. It's a doctors web-site so if you need any of it explaining e-mail me on docshubrook@aol.com.
Optic pathway hypothalamic gliomas in children under three years of age: the role of chemotherapy.
Silva MM, Goldman S, Keating G, Marymont MA, Kalapurakal J, Tomita T.
Division of Pediatric Neurosurgery, Children's Memorial Hospital, Chicago, IL 60614, USA.
OBJECTIVES: Optic pathway/hypothalamic gliomas (OPHGs) tend to occur in young children. Treatment options consist of surgical resection, radiation therapy (RT) and chemotherapy. Due to complications induced by surgery and RT, chemotherapy has gained significant recognition for the treatment of OPHG in young children. Chemosensitivity of OPHG in very young children under 3 years of age has not been well documented. We analyzed 14 patients who were treated with chemotherapy with or without surgery. MATERIALS AND METHODS: Fourteen children younger than 3 years (median age of 10 months) with OPHG were treated between 1988 and 1998. Magnetic resonance imaging was obtained in all cases. Hydrocephalus was present in 8 patients and diencephalic syndrome was noted in 6. Only 3 of these had evidence of neurofibromatosis-1. Five patients had partial tumor resection and 4 had endoscopic biopsy at the time of ventriculoperitoneal shunt placement. Pathological examination revealed low-grade astrocytoma in 5 and juvenile pilocytic astrocytoma in 4. All patients received chemotherapy: carboplatin in 8, a combination of carboplatin and vincristine in 4 and a combination of other agents in 2. RESULTS: Eight (57%) of 14 patients had a sustained reduction of tumor during the follow-up time between 15 months and 8 years. The 5-year progression-free survival was 63%. These tumor reductions were often accompanied by clinical improvements. Diencephalic syndrome responded to chemotherapy alone in 4 of 6 patients. However, 5 others had progressive disease; 3 during the treatment and 2 following the treatment (9 months and 2 years, respectively). All these 5 patients had a partial tumor resection prior to chemotherapy. CONCLUSION: A majority of OPHGs responds to chemotherapy. Due to slow progression of these tumors and adverse effects of other therapeutic modalities, we recommend chemotherapy as a primary treatment for OPHGs. Our present data indicates that partial surgical resection does not enhance chemotherapy effectiveness for OPHGs in infants or children younger than 3 years. Copyright 2000 S. Karger AG, Basel
PMID: 11096362 [PubMed - indexed for MEDLINE]
message from: jess shubrook
found a number of studies here is one.
J Neurooncol. 2003 May;62(3):281-7. Related Articles, Links
Successful high-dose chemotherapy for widespread neuroaxis dissemination of an optico-hypothalamic juvenile pilocytic astrocytoma in an infant: a case report.
Kageji T, Nagahiro S, Horiguchi H, Watanabe T, Suzuya H, Okamoto Y, Kuroda Y.
Department of Neurosurgery, Pediatrics and Pathology, School of Medicine, The University of Tokushima, Japan. kageji@clin.med.tokushima-u.ac.jp
We report a 13-month-old boy with diencephalic syndrome (DS) due to an optico-hypothalamic juvenile pilocytic astrocytoma (JPA). Massive neuroaxis dissemination was identified at diagnosis. He received 6 courses of combined conventional-dose chemotherapy consisting of carboplatin (CBDCA), etoposide (VP-16), and cyclophosphamide (CPA) followed by high-dose chemotherapy with CBDCA, CPA, and ranimustine (MCNU) and peripheral blood stem cell transplantation (PBSCT). This treatment produced tumor regression in both intracranial and spinal lesions and remarkable improvement of DS.
message from: National Hydrocephalus Foundation
You might try to contact Dr. Christian Sainte-Rose (he lives and works in France... exactly where, I do not know off the top of my head). He is a pediatric neurosurgeon... but very well versed in all whelms of neurology and the different types of conditions. On the chance that he is unable to help - he may be able to lead the parents to another doctor or doctors who can assist.
message from: Briony
Information on how targeted therapies such as Iressa (aka gefitinib) work:
Gefitinib works by blocking one of the signalling pathways that is believed to be important for cancer cells to grow and develop into a tumour. This signalling pathway involves a chemical, the epidermal growth factor (EGF), which binds to a receptor on the surface of cells called the epidermal growth factor receptor (EGFR). The EGFR activates an enzyme, tyrosine kinase (TK), sending signals inside the cell which ultimately instruct the cell to grow and divide.
In many common tumours, there is an over-activity of tyrosine kinase (TK) activation by EGFR. Gefitinib blocks the activation of the TK enzyme, which effectively ‘switches off’ the growth signal within the cell.
Because there is an over-activation of TK in cancer cells, therapy that blocks this enzyme is specifically targeted at cancer cells, sparing the normal, healthy cells of the body. This means that it has less severe side effects than traditional cytotoxic drugs used to treat cancer, which are unable to distinguish between cancer and normal cells, and therefore can lead to a range of side effects.
Gefitinib blocks the TK enzyme, resulting in the signals from the EGFR being ‘switched off’.
message from: Professor Brian Nevillle
I suggest Professor Jean Aicardi or Professor Philippe Evrardor, at the Robert de Bret Hospital in Paris. Both are outstanding paediatric neurologists and speak excellent English.
message from: Jennifer Williams
Here is a link to a Dr. at the University of Iowa who has intrests in pediatric brain tumors:
http://www.uihealthcare.com/depts/med/pediatrics/pedsmds/odorisio.html
She is a very nice person, and would probably chat with you in person.
message from: Briony
I'm learning more about 'targeted therapies' such as Iressa and how they work..... An interesting link is from the University of Texas MD Anderson Cancer Centre, specifically about how targeted therapies work:
http://www.mdanderson.org/diseases/prostate/display.cfm/?id=41cd78e6-a466-4b55-9290d71c287399d8&method=displayfull&pn=033766c5-832a-11d4-aec8005
And for more info on the Centre and other trials on Brain tumours a more general link:
http://www.mdanderson.org/diseases/braincancer/
What I'm still not clear about is whether these new 'targeted therapies' can actually treat a Juvenile Pilocytic Astrocytoma......will keep you posted on my findings....
message from: Alex
Found these contacts. You may have them already. Hope they help. x
National Hydrocephalus Foundation
12413 Centralia
Lakewood, CA 90715-1623
USA
Tel: 5624023523
Fax: 5629246666
Tel: 8888573434
Email: hydrobrat@earthlink.net
Internet: http://www.nhfonline.org
Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn, NY 11235
Tel: (718)743-4473
Fax: (718)743-1171
Tel: (800)458-8655
Email: GHRF2618@aol.com
Hydrocephalus Association
870 Market Street
Suite 705
San Francisco, CA 94102
USA
Tel: 4157327040
Fax: 4157327044
Tel: 8885983789
Email: info@hydroassoc.org
Internet: http://www.hydroassoc.org
American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta, GA 30329
USA
Tel: 4043203333
Tel: 8002272345
Email: None.
Internet: http://www.cancer.org
Children's Brain Tumor Foundation
274 Madison Avenue
Suite 1301
New York, NY 10016
United States
Tel: 2124489494
Fax: 2124481022
Tel: 8662284673
Email: info@cbtf.org
Internet: www.cbtf.org
message from: Briony
Hiya,
Follow up from Dr Joanne Katzburg as recommended by Charles Hagen further down this page....
She does not think that this stem cell transplantation has ever been used to treat Russell's so it's probably not of use but I'm following up with cordblood.com incase it can help with the astrocytoma....
message from: Briony
A bit more about the cord blood bank system......it can be used to treat:
4 forms of leukemia (AML, ALL, CML, JCML)
Myelodysplastic syndrome
Solid tumors
(Neuroblastoma, Liposarcoma, Non-Hodgkin's lymphoma, Yolk sac sarcoma)
Any many other disorders. No mention of Russell's suprise suprise but I'm going to contact them to find out more...
Cord blood is the blood found in the umbilical cord vein. It contains stem cells which are the beginning building blocks of every kind of blood cell found in the human body. Stem cells are used to treat a variety of life-threatening conditions using a transplant process.
The only time cord blood can be collected and saved is at the time of birth, so this is a decision that parents need to consider in the months preceding the birth. The process is simple and painless for mom and baby. Those stem cells could later save a life by providing valuable transplant material for mom, baby, a brother or sister, other relative, or a total stranger.
www.cordblood.com
message from: Briony
From my dad:
someone suggested to try and contact the Institute of
Child Health at Gt Ormond St Hosp..... someone called Marcus Pembury (?) was establishing a data base of different syndromes etc - also another charitable group would be worth contacting..... I think they're called the Henry Spink Foundation.
I'll try and follow these up.....
Lots of love and kisses for todays chemo session. Bxxxx
message from: Briony
Hello hello.
Have spoken with someone at St Georges Hospital who has given me the contact name of Professor Patton, a Consultant in Clinical Genetics which is apparently the field you need.... He is happy for you to write to him and he promises to answer any questions you have or help where he can. His address is: Jenner Wing, St George's Hospital, Blackshore Road, London SW17 0QT.
Alternatively you can phone his secretary on 020 8725 5335 - Anne Leonard.
Another useful person is the Overseas Manager Pauline Lewis - 020 8725 0895. She can help with any info you might need if you deceided to seek any treatment in the UK etc.
XX
message from: Briony
Been surfing the message board on NBTF and found some info on other treatments people are using for similar brain tumours, although I'm not sure any of them have Russell's - some symptoms sound very similar though...
Iressa and Tremador sound promising....
My daughter, Brittany is 5 1/2 years old, she also has an inoperable brain tumor. Her tumor was found when she was 3 years old, it is a pylocitic astrocytoma, and is located behind her eyes and nose and by the hypothylumus, thus making it inoperable. She went through 1 1/2 years of chemo(carboplatin and vincristine) and now is on an experimental drug called Iressa. The carboplatin and vincristine made her tumor shrink to 1/2 the original size, but stopped working after 9 months, that's why she is now on the experimental drug Iressa, it is much less toxic, but it also has it's side effects and risks.
my daughter was diagnosed in July 2001 with an inoperable brain tumor, located behind her eyes and nose, it is not cancer. She went thru chemo(carboplatin and vincristine) for 2 years. It is less than 1/2 the original size, but the chemo has become ineffective. Her doctors at Riley Hospital put her on Iressa about 1 month ago. It is an adult medication for lung cancer, but has shown promise in some brain tumor patients.
For instanced, when he was first diagnosed at 4yrs they started with carboplatin and vincristin. The only thing this chemo did was slow the growth and it was very hard on him. Temadol is the chemo drug of choice. We actually had part of his tumor sent to a lab for testing to see which chemo drug reacted best to kill the tumor and that drug was Temodor or temozolomide. Very little side effects.
My husband has a glioblastoma and has been on Temodar for almost a year. I know there had been a trial at Sloan Kettering of Temodar and Iressa. It is supposed to stop blood supply to the tumor.
message from: Mark Wilson
Attached is the only useful feedback I have so far from anyone. I hope you are getting some helpful leads.
Love and thoughts to Gus, Mark.
Hi Mark,
I am sorry that my information from my uncle is not more precise. There is some good information in this email and some telephone numbers that may lead you to the right specialist.
According to his research on the subject, there is no known cure as you mentioned. In addition to this list, there might be researchers at NIH (National Institute of Health) in Maryland (this is our national health research centre), and the CDC (Center for Disease Control) in Atlanta, Georgia (this is our centre for research on all diseases infectious and otherwise).
They are both huge bureaucracies, but they may have specialists in the field.
In addition, the UCLA Medical Center has two areas within it the John Wayne Cancer Clinic and the a brain research center, which may be of help. Check the UCLA website for info on these centres.
I hope these help you.
Talk soon,
Jeff
I googled Russell's syndrome and there are definitions and resources available. I'm adding a copy of one site. Basically the syndrome is most likely the result of a brain tumor which screws up normal hormone activity. Children 6 mo to 2 yrs eat normally, but become emaciated and die. It may be a result of an inborn error of metabolism and as far as I know there is no cure. The following resources are available. Sorry--it's all out of my field.
Howard Korn
Mark,
I read through the website. Sorry to hear about Gus' condition. I'll send this to my uncle who is a plastic surgeon to see if he knows anyone in the field. jeff
message from: Kellie
A friend of mine had a tumor operated on in Seattle, Washington last year.
One professor in the research section of his clinic is looking at pediatric tumors - Professor Michael S. Bobola
http://depts.washington.edu/neurosur/research/bobola.html
mbobol@chmc.org
message from: Briony
Some info from Charles Hagen whose 5 year old son sadly died of cancer. I think the cord blood transplant could be along the lines of the worldwide umbilical cord bank system I heard about in South Korea:
In cancerous situations as this chemo is usually tried first to buy time...but usually replacement of the child immune system via bone marrow transplant is the best shot at long term survival.
Contact Dr. Joanne Kurtzburg at kurtz001@mc.duke.edu as she pioneered the cord blood transplant process and may be of assistance.
Best I can do at this time.
Love,
Charles
message from: Angela
You may wish to try Dr Jeremy Rees at The National Hospital for Neurology & Neurosurgery, Queen Square, London WC1N 3BG. (J.rees@ion.ucl.ac.uk) This institute may provide a more academic overview of neuro disorders. They could also provide a recommendation of referral in France.
Another person to try is Prof Ed Newlands, who's an oncologist is based at Charing Cross Hospital in Hammersmith NHS Trust, LONDON W6 8RF +44 (0)20 8846 1799
message from: lara
Dr.Stanley Rom is a very well known pediatrician at Portland hospital in London. He would be able to supply you with the right person to speak with I'm sure: His number is 0207-383 3490.
message from: Administrator
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