Anyone familiar with Pontine Gliomas??

My daughter has earned her wings on Dec 7/ 2005.
Spend time with your children, who knows how long they will be with you. The ugly beast of DPG does not have any mercy.

Sunnyblueskies,

My heart and my prayers go out to you and your family. Know that your daughter walks with God now and has no pain.

Mike C.
Foundation For Cancer Research
www.nomorewasteddays.com

Hi,
My name is Amanda . My three year old daughter was diagnosed with Pontine Glioma on 10/31/05. She underwent third ventriacalostomy on 11/3/05 because she was suffering from hydrocephalis because of the tumor. On 11/7/05 she was transfered to NJ Cancer Instuite in New Brunswick NJ and is now undergoing radiation mon-thru friday. She receives chemotherapty (temador) every day.
and is on dexamethasone (5mg) three times a day. Her orginal weight was 28 lbs, today she weighed in at 43.50lbs and now needs to be fitted for a new radiation mask because her current mask is now too small. This is week 7 of 10 of her radtion treatment.
She takes Zofran for nausea prior to her chemo . THis medication is not covered by our
insurance. She is also taking Vistaril as needed for nausea, as well as Zantac twice a day.

We are stuggling finacially and are trying to move closer to the hospital where she is being treated. We also have two older children a son 11 and another daughter 8 who are also devastated and are going through the pain with us. If anyone knows of any support groups or funding that may help us PLEASE contact us. We are desperate to save our little girl.
Please send me any e-mail address of DR.'s or websites where I may learn more of Ruta and any other treatment used to treat pontine glioma.

my e-mail address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---any typw of information anybody can provide is deeply appreciated and needed!!! Thank you.

My nephew has been diagnosed with dpg, he is 6 years old. He just got back from Boston and finished 6 weeks of radiation along with temazolomide, he is know taking decadron, zofran and prevacid. I was so impresed when i saw him yestarday that he got back, he has crossed eyes, he has very bad motor skills on the left side of his body, cannot grab something with the left arm, he walks with assistance. I saw your message and it is encouraging to hear that your baby is doing so good. Do you mind me asking what was the therapy what do the drs. say know?
is the tumor alot smaller? is it gone?
I will love to have infromation, thank you very much. aso i will love to know more about ruta
My prayers go to all of the parents and children with situations like this.
Bachi H.

Dear Amanda,
I have some information that may help you. I have a daughter who is now 7 years old who was diagnosed with a Diffuse Intrinsic Pontine Glioma on Aug. 3, 2005. Please check out her website www.aliciahopefund.com Please sign her guestbook and leave your email address so I can forward what info. I have. I could not get your email address from this site. I hope your daughter is doing okay at this time. I can not even begin to imagine how difficult all of this would be for a 3 year old! Here are a couple links for info. on Ruta.

http://147.52.72.117/IJO/2003/volume23/number4/975.pdf

http://www.iaccgh.com/news/2003/070303.htm
I have quite a bit of info. and would not mind forwarding it to you.
Have a Merry Christmas! I hope to talk to you soon.

Christine M.
mother of Alicia

Hello Amanda,

My name is Pamela. My 6-year old son Daniel has DIPG also (diagnosed Feb 9 of this year). I am so sorry that another innocent child and their family have to suffer with this awful disease. My heart goes out to you all.

Daniel has been through a surgery to place a shunt in his brain (he developed severe hydrocephaly), 6 weeks of radiation, 7 rounds of Temodar, and is now off of all steroids (thank heaven). He has been taking Ruta & Calc Phos for about 5 weeks now. We think the results are amazing - he had been struggling with low platelets and had been unable to take his chemo for two months - within two weeks of starting on the Ruta, his platelets had skyrocketed!! He had an MRI 3 weeks after starting the Ruta, and even though he had not had chemo for 2 months, his tumor had shrunk a bit. His Dr said it was remarkable.

Here is the link for the study that was done on Ruta 6/Calcarea Phosphorica.

http://virtualtrials.com/pdf/ruta6.pdf

The doctor in India who provided me with dosage instructions for Daniel is listed below (I sent him an email, he responded overnight - you will need to do the same if you want to try this stuff):

Dr. Prasanta Banerji (father) or
Dr. Pratip Banerji (son)
PBH Research Foundation
--- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html ---

Here is the contact info for one of the women I talked to before I started Daniel on the stuff - she has GBM, a type of glioma, and has been on the medications for 4 years, she knows a lot:

Chrisie E. - --- Message edited by CancerCompass staff: for personal protection, phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html ---

I am getting the Ruta & Cal phos from Washington Homeopathic Products - website is www.homeopathyworks.com - they are very inexpensive.

Here is my contact information - if you have questions or just need to talk, please don't hesitate to reach out to me:

Pamela D.
--- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html ---

Again, I am so sorry you are going through this. You'll be in my prayers.

Pamela, Daniel's mom

Dear Amanda,

My heart goes out to you, my 11 yr old son, Max was diagnosed with DPG in March and I know where you are at the moment, I hope you get the strength soon that we all end up acquiring on this journey.

More practical matters, I noticed that Cancer Compass blocked Dr Banerji's email address, if you go on to www.thesweetestmemories.net, you will be able to contact him throught that site if you haven't already.

Max so far is doing very well, the only symptom has been double vision and he had surgery a month ago to correct that. He has only been on Cal Phos and Ruta Grav for a month, it will be interesting to see if it has an effect.

Almost since the beginning I have tried to keep Max on a good diet and have been working with a nutritionist in Utah and we have him on a number of supplements to help his system.


His conventional treatment, which may be what is helping the most was 6 1/2 weeks of radiation and throughout that taking and continuing to take Zarnestra. We have had a slight reduction in the tumor due to the radiation and the last 2 MRIs have shown it stable.


I have been busy researching my next move and I don't know if anybody else out there has come across Theraloc (aka TheraCIM h-R3 or Nimotuzumab) but the data presented so far seem to show a particularly good response rate in children with DPG (66%). This drug is currently not available in this country but will be hopefully in the next few months. Although it is a monoclonal antibody drug which a lot of doctors will tell you cannot pass through the blood/brain barrier, according to the people at YMBiosciences (the company in Canada that will be producing it) it has shown that it does get through. I would be interested to know if anyone else has info on it.

If this is hurting you financially, maybe you could change docs and go to St Jude? Thats where we go, they pay for your flight, accomadation, everything and you do not receive any medical bills from them, also there are a lot of hospitals that work with St Jude so you may not even have to go to Memphis. Currently we are only going there once a month so its not a big burden on the rest of my family. St Jude's policy is that they will not turn anyone away. When we're facing this kind of illness, money is the last thing we should be wiorried about.

Amanda, I wish you strength, and the one thing I learnt along the way is don't believe everything your doctor tells you, research everything yourself, the Internet is a wonderful tool. The other thing I have found is go to the top, email the experts and 90% of the time they do respond, they have a lot of sympathy for our plight.

Be your daughter's warrior and you'll be in my prayers.

Hang in there

Ann

Dear Ann,

My daughter also has a dipg. I was wondering what information you have concerning Theraloc? Do you have any specific websites? I tried looking through YMBiosciences but only saw press releases and did not see the same statistics you stated. I would be very grateful for any information. Also if you do not mind me asking, how is your son doing? My daughter was diagnosed in August. So far she is doing very well. Thank you for your help and information. Somewhere out there, there has to be something that can concur this horrible tumor. We just have to keep looking.

Thank you again,
Christine
mother of Alicia
www.aliciahopefund.com

Dear Christine,

If you go to the YMBiosciences press release (http://www.ymbiosciences.com/presspop.cfm?newsID=3607 ) you will see that they give a 35% response rate to pediatric gliomas but I think that 9 of the patients had dpg and 6 of them responded which is where they came up with a response rate of 66% in dpgs. To anyone else reading this, I can't stress strongly enough that this is response only, not cure, and the study was with a handful of patients, I would hate to mislead anyone. As I'm sure you know, the drug is not yet available in this country but should be shortly (6 months at most is what I've been told) and I have been told that it will be available through a hospital in Florida (I can't remember which one) as well as MD Anderson, Vanderbilt and Denver Children's Hosp.

You asked how Max is doing, he is fine, attending school and being a very normal child. For the first 8 months he wore an eye patch because of his double vision but he had surgery a month ago to correct that. The radiation made him throw up on occasions for quite a few months afterwards but now its rare if he's sick and he seems to tolerate the Zarnestra very well, a lot of children have problems with hives.

I would be interested to know what chemo Alicia is on and what made you choose that one, Zarnestra is a phase 1 study drug which we may be crazy doing but we liked the thinking behind it and so far, so good. I am a big believer in good nutrition too, a healthy body has a better chance.

I look forward to hearing from you and we enjoyed your website, Alicia is lovely, I left her a message.

Take care,

Ann

How is your daughter doing? My daughter, Ashley, age 13 was diagnosed June 3, 2005. She too did radiation and temador in a pill form. In August the tumor had shrunk. However in October the tumor came back again double in size. Ashley, too is now on VP16. It is given with apple juice through her feeding tube. She had a CT scan done Friday, January 6, 2006 and the tumor has shrunk. Dr. Godder was stunned at the results. Pontine gliomas interfere with bodily functions. Therefore, anything in a pill form will not work as well because one of the things effected by this tumor is the digestive process. Pills have to go through so many functions of the body before it finally gets into the blood stream. Since Ashley has been on the VP16 she is showing signs of improvement. She did have to get two pints of blood on Monday January 9, 2006. The key factor here is if she is able to continue to tolerate the chemo without getting pneumoia. We are waiting to hear from Dr. Godder concerning the Ruta 6 treatments. She is doing her own research. We have ordered the products to begin treatments for Ashley if Dr. Godder thinks it is okay.