Rare brain tumor....DIPG

cindysuetoyou said:

haven't dealt with this
Hi, tmfaubus.

I haven't known anyone who has had this kind of tumor. I hadn't ever heard of it, but I tried to learn about it by doing an internet search. I hope that you aren't annoyed and you don't feel like I am wasting your time by responding when I know next to nothing about your situation, but I hated that no one responded and I didn't want you to feel like none of us cared. I think that probably most people on this site would love to help you but don't know much about DIPG. And I think this is a very rare tumor for an adult to have.

I wonder if you could ask your oncologist to put you in touch with other adults that have DIPG? One of the first things our oncologist asked us when my son was first diagnosed was did he want to talk to other young men who were also battling brain cancer.

Also, you might try the people at an American Cancer Society office near you. Maybe Lance Armstrong's foundation, LIVESTRONG could connect you to someone with DIPG? I'm just trying to think of some way that you could find some adults who know what you are going through. I'm really sorry that you didn't find any real help on this site.

Please post on this site again and let us know how you are doing. I will be thinking of you and praying for you too.

Love and blessings,
Cindy

LeslieLand said:

hi
My husband was dx'ed with diffuse intrinsic pontine glioma in January 2011. He was 33 when diagnosed. He did radiation treatment at MD Anderson in Houston in Feb/Mar/Apr last year (28 treatments). He appears to be somewhat stable right now, and is getting MRIs done every 3 months at this point.

It IS hard to find other adults with this! I went through Imerman Angels and was connected to a young lady in Canada who was also diagnosed with this. It's 12 years later for her now

LeslieLand said:

May I ask what your original

May I ask what your original symptoms were, and for how long before being diagnosed? did you do any radiation treatments?

I will be keeping you in my thoughts.

LeslieLand said:

Have your symptoms returned?
Have your symptoms returned? Your headaches sound very similar to what my husband was (is) having. They thought they were exertion headaches at first, but the flight surgeon sent him for an MRI to rule out anything bad and there it was. (He was a pilot in the USAF.) He's still getting headaches, but we really don't know how much is from the cancer and how much is from the radiation. Since the radiation, he cannot lie down on his back because it will immediately trigger a headache on the base/back of his head. We are so fortunate that he doesn't have any other symptoms right now, but since what they saw on the MRI appears to be the entire pons, they've pretty much told him that he'll know if it's growing before any new pictures are taken.

I'm sure you can understand the desire to grasp for anything that may possibly help. Have you tried any alternative treatments? I want my husband to try acupuncture- I figure it can't hurt! And we've also modified our diets drastically, to a more primal/paleo diet, especially cutting out sugars and grains. Aside from the **** cancer, he's been really healthy. Even with me and our almost 3 year old daughter getting pretty sick a few times in the past year.

Thanks again for communicating with me. I will continue to keep you in my thoughts.

I_Promise said:

vaccine or oncolytic trial?
Dear tmfaubus,

You seem to say that your disease is progressing on chemo; have you thought of a vaccine trial (like GAA synthetic ) or an oncolytic virus trial (like adenovirus, NVD, herpes, or polio)? Just a thought.

I am so sorry about your disease and your symptoms.

J.

LeslieLand said:

Thanks for the warning. The
Thanks for the warning. The docs we see are very...conservative in what they tell us. I get it that they just can't know how any individual will react to treatments and how fast this cancer will progress, so thanks for the heads up.

Where do you look for clinical trials? I've seen a few on NCI for adults with DIPG. Some of them look completely scary...but I guess when there aren't any other options...

Aimeesmom said:

Rare brain tumor....DIPG
tmfaubus,

I'm sorry I've never responded to you via the DIPG network...DIPG's are most common in children between the age of 5-9. The survival rate once diagnosed is between 12-18 months. There are approximately 200-300 children diagnosed each year with DIPG.
My daughter Aimee was DX at 11, in 2007 which is uncommon and battled for 14 months before she past at the age of 12. At the time of her DX she was in a very small group (about 5) that were above the age of 9 that I am aware of. Since then many more into their teens/adults have been DX. I've also become aware of children being DX while still in the womb...

DIPG in adults is extremely rare. I only know of 4 cases where adults between 30-50 have been diagnosed in the last 2 years. Sadly, there is not much information available about DIPG in children or adults. However, the treatment options for adults far better then that in children. Since there is not much information, or known cases of DIPG in adults, I can not offer you statistic's on survival. I do know that since my daughter's diagnosis in 2007, DIPG has now been effecting all ages from birth through adulthood. I know that some say there are survivor's of DIPG, but in many of those cases, partial removal of the tumor occurred and/or a biopsy was able to be done since some of the tumor was outside the pontine. Therefore, giving the doctor's the ability to determine if in fact it is a DIPG and not something else. DIPG are most commonly diagnosed based on MRI's only...

Since DIPG (diffuse intrinsic pontine glioma) are located inside the pontine or center of the brain stem surgery in most cases is not an option. Not even a biopsy can be done to determine what exactly the tumor is. Also, there is nothing that can break through the blood brain barrier (the brain's way to protect itself) As of today and since many of us parents have donated our children's tumor's to research now are they starting to figure out what this tumor is. However, I do feel that the genetic and/or molecular biology is very different between children and adults. Considering in most cases children that are diagnosed haven't even hit puberty so that in itself will change the biology of the tumor. I've been told over and over again that there is no cause, and this just happens, something triggers it...Not an answer I'm welling to accept.

Through my daughter's foundation I focus more on WHY she got sick, in the hope's of finding the possible cause and a way to stop it sooner then later or preventing it all together. I think genetic's plays a part in the growth, but I feel the environment, and many of our electronic's also are a major contributor. Aimee felt that you can't cure something if you don't know what it is or why it's there... Even studying the tumors after death in most cases will not give a true reading since the tumors are altered by chemo and radiation.

I'm sorry I can't offer you more information. Please, know that I will keep you in my prayers, and try my best to find out more for you. I will also see if those others that I am aware of will contact you. Sadly, one of them recently past at the beginning of the year. He was in his early 40's.