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Thema: DIPG: Glioblastom der Pons

DIPG: Glioblastom der Pons
Melati
09.11.2017 09:29:48Neu
Hello
I was diagnosed Pons glioblastoma grade IV (DIPG) in May 2017.
I went through 6w radiotherapy and 3 rounds chemo.
Unfortunately last week MRT shows tumor size progression.
I am looking for brain tumor fighter to share support . Please leave contact if interested to talk.
I am sorry that you are also in this website.
I hope you or loved one get well.
Thanks and take care.
Melati
paolo
11.11.2017 15:14:06Neu
I am very sorry to hear, that you already have a progression after such a short time.
I guess you already had Temozolomide as chemo.
Did you doctors suggest a change of the chemo agent like procarbazine, CCNU or maybe an angiogenesis inhibitor like Bevacizumab?
Were they able to do a biopsy of the tumor to determine the MGMT-status or is it too risky due to the location?
Where are you from?
Maybe there are viable clinical trials that are still recruiting in your country.
Your doctors might be able to get you the contact informations for such trials.
I suppose most of the users here on the forum aren´t well versed in english.
For english speaking support groups it might be worth checking out reddit(dot)com, specifically the subreddit r/braincancer.
There are also a few english speaking forums like the "cancer survivors network"
or the "macmillan cancer support" group and a few more.
You can find them via google by searching for "brain cancer forum" or the names of the groups.
The brain cancer subreddit on reddit(dot)com seems to have the most participants.
There is a facebook group as well, called "DIPG Support & Awareness", which might be the most suitable for your specific diagnosis.
Of course you are always welcome to ask questions here, if you feel like it. The few english speaking users here will certainly try their best to answer you as good as they can.

I wish you and your relatives all the best, and hope that you`ll stay strong despite that grim diagnosis.
paolo
Melati
14.11.2017 10:01:47Neu
Thanks Paolo.
I am Indonesian and live in Germany.
I did stereotactic biopsy in end of May 2017, and the result confirmed the diagnosis.
Doctor will change the chemo treatment next week.
I know DIPG support and awareness, mostly the warriors are children.
I will check Reddit, thanks.
Looking for adults that fighting DIPG to share and support.
Have a nice week!
Melati
paolo
15.11.2017 16:10:33Neu
Hey Melati,

I hope the new chemo agent will work for you - fingers crossed!
Do you have any close friends or immediate family that you can talk to about your current situation? A good mental and social support group is as important as a good doctor.

After checking the aforementioned sites again, i must revisit my earlier statements.
The brain cancer subreddit on reddit(dot)com, while having many users, seems more tailored towards general discussions about living with brain tumors and coping with the mental aspects but doesn`t provide much medical and scientific background informations.

The macmillan brain cancer group and its forums seem to be very active and the users and volunteers are responding on the forums regularly, providing lots of valuable informations about treatments and support.
Right now, there is an active thread about brain stem gliomas at the top of their discussions board with the latest reply from yesterday.
So there are others out there with the same diagnosis actively writing in the macmillan forums.
you can find it at:
community(dot)macmillan(dot)org(dot)uk/cancer_types/brain-cancer/discussions

Another good place seems to be the brain cancer message board at cancercompass(dot)com with a good amount of friendly and active users.
After a quick glance I found a recent thread about pontine gliomas in young adults.
The user base seems to be more international from lots of different countries.
Other than that it seems really difficult to find adequate resources about that specific diagnosis, as it is so rare.
I wish I could be more helpful

All the best wishes and kind regards
paolo
NACH OBEN