Anyone aware of new treatments for diffuse pontine glioma?

Question

My 6-year-old niece was diagnosed with this rare brain stem tumor earlier this week. If you are aware of any new treatment options that may offer hope, please advise...and if you aren't, please keep her in your prayers. Thank you.

She was diagnosed at A.I. dupont Children's Hospital in Wilmington, DE and her treatment plan proposed treatment plan (includes temozolomide) is being reviewed by St. Jude's. Thank you for the information.

Answer 1

Sorry to hear about your niece. I have little experience with this type of cancer - my practice is limited to adults. I have some links below with some info about the disease and potential new treatments and clinical trials. Not sure where she is being treated, but hopefully at a large university medical center that does a lot of research. Ask about clinical trials that your niece may be eligible for - they might be her best hope. You may need to travel to get her the treatment she needs. Will keep you and your family in my prayers.

http://www.cancer.gov/templates/doc.aspx?viewid=e25f1930-600e-4016-a261-4ed3ec8bb01d§ionid=45&version=1

http://www.nomorewasteddays.com/pontine_glioma.htm

http://www.cancer.gov/clinicaltrials/COG-ACNS0126

Answer 2

I'm so sorry to hear about that little girl. I was just diagnosed with lymphoma too. It is extremely sad to read about this but here is what I found out. Approximately 150-200 children are diagnosed yearly with brainstem glioma, with most being diagnosed during the first decade of life. Up to 75% of these children will have diffuse Pontine Glioma, which are highly infiltrative tumors involving a particular area of the brainstem called the pons. Tragically, these tumors carry the worst prognosis among the various subtypes of brainstem tumors; most children with diffuse Pontine Glioma will die between six months to two years from the time of diagnosis. Why is this? Because of their location in such a vital area of the brain and their infiltrative nature, diffuse Pontine Glioma are inoperable tumors. Therefore, surgery, which is essential for the cure of most brain tumors, is not an option for these children. Radiation therapy helps delay the progression of diffuse Pontine Glioma, but, unfortunately, is not curative. Lastly, despite intensive efforts over the years to identify effective drugs, all efforts have failed, as these tumors have proven highly resistant to conventional chemotherapy.
I will be praying for her because I know that miracles can happen. Once again, I'm so sorry.

Answer 3

i am so sorry , my son is dying from difuse pontine glioma . get prepared , she will need some things sooner than later . such as a proper wheelchair ,one that reclines , shower chairs , toilet handles . be aware of any chocking issues or swalling problems , her eyesight might start getting blurry, or have double vision. she may begin to lose control of her bladder and bowels. her speech will start slurring. my son was diagnosed in jan of this year , at that time he was still doing good , now they say he has about a month left.my heart goes out to your family , this is a devastating and heartbreaking cancer............email me anytime