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message from: rcezpy
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message from: Ãîíäóðíÿ
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message from: William
Here is the UK website for Protocel, Entelev, Cancell which is the original formula created by Jim V Sheridan
http://www.protocel.co.uk
I also found a great book called Outsmart Your Cancer by Tanya Harter Pierce. Its really easy to read and very informative about Protocel and other non-toxic ways to fight cancer. Her website is: http://www.outsmartyourcancer.com
message from: Post Pals
www.postpals.co.uk cheer seriously ill children up with cards, letters and small gifts :)
message from: Zoe, Richard and Lily Collyer
http://cancerweb.ncl.ac.uk/cancernet/100842.html
I am quite sure that you have seen this site? I typed in Cure for Diencephalic Syndrome into google and it bought the above site and many others up.
May make for some reading/research?
Thinking of you and will be over to see you soon x Z, R & L
message from: Briony
Thanks to Kathy below - we've finally managed to find parents of another sufferer of Russell's Syndrome (Diencephalic Syndrome) in the US by registering on the BRAINTMR List Group and have been very encouraged by their daughter Katie's progress !
message from: Terry
Please take a look at www.burzynskipatientgroup.org. Dr. Burzynski is a controversial physician in Houston, Texas who has had good success with pediatric brain tumors. He was a presenter at the recent pediatric brain tumor conference in Boston that you mentioned, perhaps your doctor saw him. My husband is a 10 yr. survivor of glioblastoma thanks to him.
message from: Kathy
Successful high-dose chemotherapy for widespread neuroaxis dissemination of an optico-hypothalamic juvenile pilocytic astrocytoma in an infant:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12777080
Optic Pathway Hypothalamic Gliomas in Children under Three Years of Age: The Role of Chemotherapy:
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ProduktNr=224273&Ausgabe=226513&ArtikelNr=28996
Successful chemotherapeutic treatment of diencephalic syndrome with continued tumor presence:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10897816
Treatment of diencephalic syndrome with chemotherapy: growth, tumor response, and long term control.:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9655307
Cisplatin/vincristine chemotherapy for hypothalamic/visual pathway astrocytomas in young children.:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9524084
message from: Kathy
You might want to consider joining the pediatric brain tumor list. There are about 500 members, and you might be able to find out something about Russell's Syndrome.
The group is at:
http://groups.yahoo.com/group/pediatricbraintumors
There is another brain tumor support group with approximately 1000 members, both adult and pediatric, you can find out more at:
http://www.braintrust.org
message from: Briony
Some more interesting sites on the nutrition side:
http://www.utmb.edu/pedi1/main/facbios/DivGASNUT/nutritionconsult.htm - I'm still trying to locate Dr Kien
http://www.nutritional-solutions.net/index.html - I'm hoping Jeanne Wallace is the angel we've been looking for with advice on how to get Gus' weight up
http://www.seanet.com/~webgirl/AN_research/immune2.html - support during Chemotherapy is interesting to read
message from: Briony
Interesting articles:
http://www.stlouischildrens.org/articles/professional.asp?ID=969
http://www.businessandhealth.com/be_core/content/journals/k/data/2002/0901/puzz0902.html
http://www.ucch.org/sections/neurosurg/NeuroReview/06.2-Oncology-Glial/AstroVariants.html
message from: Briony
Some links on Nutrition, Tube Feeding and Food Supplements:
http://www.nutritionsociety.org/
http://www.nal.usda.gov/fnic/
http://www.dietetics.com/
http://www.bda.uk.com/
http://www.dietetics.co.uk/top15.asp
http://www.bris.ac.uk/Depts/NorahFry/food/thinking.html
http://www.pinnt.co.uk/
http://www.walgreens.com/store/novartis/
http://www.numico.com/en/
http://www.ensure.com/SpecialHealthConcerns/Cancer.asp
message from: Briony
Links about Cantron/Protocel/Cancell
http://www.cancerchoices.com/cantronresearch1.htm
http://www.cancertutor.com/Cancer/Protocel.html
http://abarefootdoctor.com/IF%20YOU%20HAVE%20CANCER.htm
http://www.protocel.com/
http://altcancer.silvermedicine.org/protocel.htm
http://www.outsmartyourcancer.com/
http://alternativecancer.us/treatments.htm
message from: Debbie Smart
Found these on the Web. Don't know if they'll be of any use? Lots of studies into the effectiveness of two drugs, carboplatin and vincristine. Hope this helps.
Our experience with using carboplatin and vincristine, treating a much larger group of patients than any other study thus far published, suggests that this drug regimen is at least equivalent to, if not better than, other drug regimens in its ability to delay the need for radiotherapy. The progression-free survival rate in the patients treated was 68 ± 7% at 3 years; 31 of the patients have been followed more than 3 years since diagnosis without requiring any other form of intervention. Given the small numbers of patients treated in other series; the variability in eligibility, with some studies treating only children with diencephalic tumors and other studies entering patients with tumors in any site in the nervous system; and the restriction of some studies to treating only patients less than 5 years of age and others treating children of all ages; no further conclusions can be drawn concerning the superiority of one regimen over another.
...very young children, especially those younger than 1 year of age, did poorly after surgery alone. In contrast, in our series, young children, including those younger than 1 year of age, often had an excellent response to chemotherapy.
Another approach presently being followed is to use more intensive chemotherapy in an attempt to increase overall response and ultimately disease control. Although this seems intuitively reasonable and may prove to be a useful approach, in our experience the degree of response or, for that matter, the determination of an objective response did not correlate with 3-year disease control, as those patients with complete, partial, or minor responses to chemotherapy did not have better 3-year progression-free survival rates than those with stable disease after treatment. This may not be surprising, given the indolent nature of many of these lesions and their slow, partial response to other modalities of treatment, such as radiotherapy. A limitation of this finding is that the neuroradiographic responses of the patients in this study were not centrally reviewed.
Our experience using carboplatin and vincristine demonstrates that children with low-grade tumors outside the diencephalic area will also respond to treatment. The largest subgroup of children, other than those with diencephalic tumors, were those with exophytic, biopsy-confirmed, low-grade brainstem tumors, which were believed not to be amenable to further resection. Excellent responses, including complete responses, were noted in the majority of the 12 children with brainstem tumors who were treated with carboplatin and vincristine. At 2 years, only three of the 12 children with brainstem tumors had developed progressive disease. Also, children who presented with the diencephalic syndrome responded to treatment.
CONCLUSIONS
Our experience in an expanded series of 78 children with progressive low-grade gliomas substantiates the potential efficacy of chemotherapy in at least delaying radiotherapy for the majority of young children with such tumors. This benefit is not only limited to children with diencephalic tumors and is certainly a viable option for patients whose tumors are not amenable to resection without a significant risk of morbidity. The most effective regimen to be used in these patients cannot be gleaned from a single arm study, although the experience with carboplatin and vincristine is encouraging. Prospective randomized studies are required to address the issue of "best" therapy and the relative value of chemotherapy as compared to surgery and/or radiotherapy. The usefulness of chemotherapy for older children with low-grade gliomas, especially for those with limited disease at the time of diagnosis, remains unproven.
message from: Briony
Thanks for all the great info you posted below Debbie. I hope you don't mind if I truncate it a little and send the full doc directly to Tanya and Ed as your info is quite long for the page....
Thanks again - it looks very interesting !
message from: jess shubrook
Here is a link to the Children's National Medical Centre in Washington which has done much research into it. A Dr Tobey Mongomery is head on the oncology department who is heading the research at present so here are the 2 links.
www.cnmc.org
www.dcchildrens.com
message from: Jennifer
Here is a bulletin board for parents
http://www.squirreltales.com/cgi-bin/amb/brain/13.shtml
message from: Jennifer
http://www.stjude.org/brain-tumors/0,2577,466_2184_2985,00.html
message from: Briony
A few new sites I came accross that seem useful - I'll sift through them for info on trials and other info and contact any that seem potentially useful:
http://www.abta.org/
http://www.cancer.gov/clinicaltrials
http://www.centerwatch.com/
http://www.virtualtrials.com/
http://www.cancertrialshelp.org/patientsCaregivers/patientsCaregivers.jsp
http://www.emergingmed.com/
http://www.phrma.org/
http://www.veritasmedicine.com/
http://clinicaltrials.gov/
http://www.children-cancer.org/
message from: Steve Karim
You May Know this already.......
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
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
Kind Regards,
Steve Karim BMS Clin.BioChem.
Oxidation Therapy
www.oxidation-therapy.com
message from: Mark C
A medical 'contact' of mine detailed the following. Hope it's useful!
"It seems that the disease has many names and is mainly listed as Diencephalic syndrome on the internet. Anyway, I hope that the parents find the following links useful. The first is a US site but it does give links to support groups who probably would have UK contacts.
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Diencephalic%20Syndrome
http://www.whonamedit.com/synd.cfm/2893.html
http://www.icomm.ca/geneinfo/dienceph.htm"
message from: Briony
Here's a link to an interesting site I found on The British Paediatric Surveillance Unit (BPSU) of the Royal College of Paediatrics and Child Health (RCPCH):
http://bpsu.inopsu.com/index.html
I've contacted them to see if they have done any studies on Russell's or if they have any useful contacts....
message from: Mick Williamson
Same link that Lenore mentioned but more details.....
Contact A Family
Provides links to organisations for children with rare medical disorders.
209-211 City Road, London EC1V 1JN
Tel: 020 7608 8700
Free Helpline: 0808 808 3555
www.cafamily.org.uk
message from: Martine et Régis
http://www.lachainette.com/
Ce site permet de mettre en contact les familles concernées par une maladie rare.
Il est possible de mettre un lien vers le site de Gus.
Le site est en 5 langues, avec un lien particulier vers « …amis anglais »
Comme je l’ai déjà proposé, je peux, si vous le souhaitez, faire une traduction du site en français.
Autres sites en France :
La Fédération des Maladies Orphelines : http://www.maladies-orphelines.fr/
Base de données sur les maladies rares et recherche de centre de traitement: http://www.orpha.net/
Nous pensons beaucoup à vous
Bisous
Martine et Régis
message from: Briony (again)
I'm on a roll now ;¬]
Found this info on clinical trials for brain tumour treatments - very up-to-date and technical:
http://virtualtrials.com/lesstoxic.cfm
It includes trial details and contact info for the doctors....
Info on Iressa: http://www.astrazeneca.com/pressrelease/498.aspx
http://www.pslgroup.com/dg/233eca.htm
message from: Briony
From the NBTF site:
Someone called Skip recommends: dr. chenery at www.newportdiagnosticcenter.com
www.cancer.duke.edu/btc
message from: Briony.
Donovan sent me this site today - I don't think I've come across it before so maybe you haven't either...
http://braintumor.org/index.html
It has some useful info, message boards and support groups. Including a PDF that I'll e-mail you now...
Love and kisses,
Bxx
message from: Lenore
Suggest you try Contact a Family who link families whose children have rare disorders. Tel no. 0808 808 3555.
Best wishes, Lenore.
message from: Briony
Hi Zoe,
I also saw the program on C4 a few weeks ago....it was about a doctor called Henry Marsh. An amazing brain surgeon at St George's Hospital in South London.
It was amazing to see the techniques he was using - an amazing and passionate guy...
I was also keen to contact him to see if his radical surgery could be of use to Gus but from Ed's reports from the doctors in France there is really no chance of surgery. I have contacted the hospital anyway and hope to get more info from them....you never know if Mr Marsh will have a different view point on operating on Gus but unfortunately I think it is unlikely...
Some info on the program is at:
http://www.bbc.co.uk/health/programmes/ylith.shtml#links
Keep up the good work...the Mayo centre sounds interesting....
Bx
message from: Dianna B.
Check this link out:
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Diencephalic%20Syndrome
It gives some organizations that you can contact to see if there is some sort of support group for this problem that you can reach.
message from: Zoe
I forwarded the email to all people I know and someone came back to me today with an interesting site. Its the Mayo centre in USA. They seem to be a research company and treat rare diseases. I have emailed them on your behalf and forwarded the link to this site. Lets hope we get a reply or at least another link to someone who may be able to help.
Another friend contacted me this morning and said she saw a really amazing program on channel 4 a few weeks back about a brain surgeon. His own son contracted a rare form of cancer which was in a really difficult place to operate. He survived and was completely cured. I am going to contact C4 to try and get the name of the doctor and the contact details, should you wish to give this route a try. I will post another message as soon as I get the info. Thinking of you daily x Zoe
message from: Nicola Redfern, UK
Having been sent this message by a colleague am wondering if its worth you getting in touch with Martin House - its a childrens hospice in Yorkshire that offers respite and terminal care across a range of childrens life threatening diseases. I used to work there years ago and would highly recommend the atmosphere and support. They may well know of other families with this condition or be able to help point in the right direction.
see www.martinhouse.org.uk
message from: lara
I see someone has already suggested the NIH in the USA as they have a rare disease branch. Just be aware that as it is the USA, their treatment protocol will undoubtedly be conservative as they require so much testing and government control in order to openly sanction a treatment. But I do believe they should be contacted.
message from: Briony
A couple more from Barbara:
http://www.mskcc.org/mskcc/html/44.cfm
http://www.nih.gov
message from: Briony
One of the many kind people offering support has found some Swedish sites that might be of use....this is one of them - she is asking a Swedish friend to help translate so more to follow:
http://www.sos.se/SMKH/2001-29-128/2001-29-128.HTM
message from: Diane
here's a good site for support, maybe getting some info, a few doctors post there too.
http://brain.hastypastry.net/forums/index.php?
sorry to hear about your little one.
message from: Natasha
<
http://www.cafamily.org.uk/rda-uk.html
I am really sorry to hear about Gus, my fingers are crossed, as is everything else, that you find a cure.
all my love
Natasha (met you at Briony's barbecue)
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