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Rare brain tumor....DIPG
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Jan 04, 2012 - 3:33 pm
I am looking for other adults who have been diagnosed with a DIPG (diffuse intrinsic pontine glioma ) |
Joined: Feb 2012
Eric,
Oh no. I was so hoping to hear better news. How much radiation are you scheduled to do?
I've had quite a few people ask me if we've considered seeing Dr. Burzynski? Just curious what your thoughts are on him/that clinic.
We've also started using essential oils - a brain cancer protocol. It can't hurt, right? We also ordered some Ruta 6, but haven't started it yet. I think my husband is getting ready to start throwing everything at this damned cancer. He had a headache yesterday- the bad kind at base of skull, and I know it bothered him. He's not scheduled for another check up/mri until August.
I will be keeping you in my thoughts and sending all the healing thoughts and light out into the universe for you. Please keep in touch, and know that I'm here.
Take gentle care,
Leslie
Joined: Oct 2012
My brother was diagnosed 11/11. He was given radiation combined with temador. He had some what clean scans and in 8/12 it showed some reduction in the tumor. The following month he started to get symptoms and his scan this month showed new growth. They are starting him on avastin with ceenu. I was wondering how your husband was doing? We are hopeful that this will work but worried about the side effects. I was looking into Ruta 6. Have you been able to try it? I appreciate any info or support. Your husband is in my prayers!
Joined: Jul 2012
I'm so sorry to hear it's back. Just wanted to let you know your post re: hitting the nearly 10 year mark without progression brought me a lot of hope. Thanks so much for sharing. You are definitely not alone. I was diagnosed at 25, that was back in 2008. Am curious, are you considering any further treatment/trials at this stage?
Thinking of you during this difficult time.
Best.
Joined: Jul 2012
i have never heard of the type of condition you have or had but i am sorry that u have had to go through such a difficult time.i was told i had a brain tumor on my right side about three years ago everyday life seems to be a struggle now but i hope that you are well god speed brother
Joined: Apr 2013
Hi I was diagnosed February 21, 2007 at 20 years old and given a year to live. I have undergone 2 months of radiation and several stints of chemotherapy (Temodar). It has started growing twice before and I gained a "little buddy" in Sept. 2011 that has since stablized.
I initially started out with excrutiating pain in my legs when I would lie down which had all my doctors believing it was a pinched nerve, a million tests later, the MRI that was supposed to last 20 minutes, instead took 2 hours, revealed my DIPG.
I currently am having double vision (for more than a year), terrible balance, , head pressure, scratchy voice/trouble breathing/speaking, choking issues, numbess in my face and tongue, hearing loss in my right ear, dry mouth and terrible dizziness.
I receive scans every 3 months and my last one (March of this year) showed no new growth so we're unsure why I am having such severe symptoms (more severe than symptoms at date of dignosis even).
I am going to MD Anderson next week to seek help there.
Does anyone have any suggestions? Particularly for the double vision?
Any help would be greatly appreciated and if I can help anyone with their fight please don't hesitate to ask =)
-LONDON-