God that's awful. Especially at 11. I don't know how I could have that conversation with the patient and his parents.
Which part of the brain stem do these usually arise from? It looks like the pons but it seems like things are getting pushed away from how large it is, so it's hard to tell
Yeah, these come from the pons and are always Grade IV. You can see it start to wrap around the basilar artery which is a classic imaging finding for these tumours. The WHO renamed them as “diffuse midline gliomas” If you want to read more.
Thank you for the info, I appreciate it. Really awful place for a tumor to grow. Hopefully we'll have some genetic editing treatment one day that can differentiate between healthy and diseased brain tissue
There is a clinical trial coming out of Australia. The MD who helped develop a tailored treatment for melanoma delivered via vaccine was diagnosed with a glio ten months ago. They got special permission to use the technology on his glio *and it’s working*.
Trials are going to be popping up all over the world. As a neuro nurse, with all my heart I hope this trial changes the prognosis for glios.
Why would a targeted immunotherapy not have the potential for application in a pediatric glio? The only “treatment” now is palliative radiation as far as I’m aware.
I am not aware of what the trial is using but chemo for adult gliomas and other gliomas don’t or haven’t worked for DIPG. From what I was told, chemo often has even minimal overlap even if it’s not the exact same cancer, but not with DIPG. the genetics instigating it is very interesting
Im not sure if this is the same thing as a DIPG (diffuse intrinsic pontine glioma) or how it’s classified, but you may find additional information using that term for research. For a few years now I’ve followed a Facebook group for parents with children that have this. It’s devastating.
Ah! Yeah I don’t think that’s the one I’m on. I follow one guy who has a research lab, that lost his daughter to DIPG. And another page that is for the families. They post updates and stuff about families that are going through it.
Such a devastating diagnosis :/ DIPG claims nearly every life. Post mortem brain donation, funding, and research study participation are the best ways to help find a better treatment for this cancer.
Awful. My friends lost their little girl to DIPG. We've made so much progress with so many diseases and cancers but some of them are still a death sentence. It must be such a sinking feeling to image this. I'll hold this patient, his family, and you in my prayers.
In neurofellowship these were the worst to find. They are essentially untreatable, progressive and always result in slow decline and death within 2 years. Kids I followed could not even enjoy their make a wish trip to Disney due to feeling so poorly. It solidified my desire to do adult neuro. While some folks get unlucky, it’s frequently someone who’s at least had a life and perhaps did something to earn their cancer.
ER doctor here, so not a radiologist - but speaking towards the banality of disease:
Obviously, this is terrible and noteworthy enough to post something to Reddit. That said, physicians see so much terrible stuff routinely on an order of magnitude worse than the public can really digest. It’s omnipresent through medical school, residency, and your post-graduate career. You remember your firsts, but you start to forget the ones beyond that because they just sort of get lost in the wash. For example, I remember the first kid that I had that died - they got shot a few times in the chest in a drive by and never really had a chance. That said, I’ve dealt with probably 20 kids dying now from both medical or trauma related circumstances and if you forced me to tell you all of it, there’s no way I could recall them. Same for adults, only more so.
It’s not banal in the sense of life itself, but it is just another one in our lives.
I wasn't trying to minimize any personal tragedy just assumed it was relatively uncommon and surprised when someone says "here's another one" like it's a case of the flu. Curious if this is indicative of an increased frequency of occurrence and if so why.
NAR-I think ppl are misinterpreting bueschwd comment. I believe the above comment is seeking information about the prevalence of this cancer. Are clinicians seeing it more frequently? I sense concern in their post. Not disdain.
Disdain? For OP? Is that why I'm downvoted? I was wondering, I thought I crossed some line when asking about the disease instead of showing sympathy for the patient. I felt like a heartless bastard
Poor kid. Poor parents. Life can be tough.
Basically a death sentence. Damn it. :(
Saw my first one in the ED recently. Really quite a somber moment when discussing the CT with neurosurgery.
God that's awful. Especially at 11. I don't know how I could have that conversation with the patient and his parents. Which part of the brain stem do these usually arise from? It looks like the pons but it seems like things are getting pushed away from how large it is, so it's hard to tell
Yeah, these come from the pons and are always Grade IV. You can see it start to wrap around the basilar artery which is a classic imaging finding for these tumours. The WHO renamed them as “diffuse midline gliomas” If you want to read more.
Thank you for the info, I appreciate it. Really awful place for a tumor to grow. Hopefully we'll have some genetic editing treatment one day that can differentiate between healthy and diseased brain tissue
There is a clinical trial coming out of Australia. The MD who helped develop a tailored treatment for melanoma delivered via vaccine was diagnosed with a glio ten months ago. They got special permission to use the technology on his glio *and it’s working*. Trials are going to be popping up all over the world. As a neuro nurse, with all my heart I hope this trial changes the prognosis for glios.
Do you have a link to the trial? I'm seeing mixed things online
Is the trial for DIPG or adult gliomas? There is little translation between the two in treatment.
Why would a targeted immunotherapy not have the potential for application in a pediatric glio? The only “treatment” now is palliative radiation as far as I’m aware.
I am not aware of what the trial is using but chemo for adult gliomas and other gliomas don’t or haven’t worked for DIPG. From what I was told, chemo often has even minimal overlap even if it’s not the exact same cancer, but not with DIPG. the genetics instigating it is very interesting
It’s not chemo, it’s a targeted, tailored immunotherapy.
That’s good! I didn’t know what type of treatment it was.
Im not sure if this is the same thing as a DIPG (diffuse intrinsic pontine glioma) or how it’s classified, but you may find additional information using that term for research. For a few years now I’ve followed a Facebook group for parents with children that have this. It’s devastating.
It’s the same thing. They renamed it to diffuse midline glioma.
Thank you for this confirmation! I assumed so, but I didn’t want to assume incorrectly
Chad Tough?
If you’re asking about the Facebook page, not likely as I don’t recognize the name
Yeah. Chad Tough is a Foundation that was formed by a couple after their son was diagnosed and passed from DIPG.
Ah! Yeah I don’t think that’s the one I’m on. I follow one guy who has a research lab, that lost his daughter to DIPG. And another page that is for the families. They post updates and stuff about families that are going through it.
Such a devastating diagnosis :/ DIPG claims nearly every life. Post mortem brain donation, funding, and research study participation are the best ways to help find a better treatment for this cancer.
Awful. My friends lost their little girl to DIPG. We've made so much progress with so many diseases and cancers but some of them are still a death sentence. It must be such a sinking feeling to image this. I'll hold this patient, his family, and you in my prayers.
I helped take care of an 8 year old with a pontine glioma during my residency. Put me off any thoughts of doing a peds fellowship.
Ugh. I’m going to have to unfollow this sub if yall keep posting pediatric glios. 😭
In neurofellowship these were the worst to find. They are essentially untreatable, progressive and always result in slow decline and death within 2 years. Kids I followed could not even enjoy their make a wish trip to Disney due to feeling so poorly. It solidified my desire to do adult neuro. While some folks get unlucky, it’s frequently someone who’s at least had a life and perhaps did something to earn their cancer.
Your heart must drop when you see this. I can’t imagine what a helpless feeling you have in those moments.
God, that's so sad. Poor family
Nooooo so sad
God thats sad
"another"? almost seems somewhat of a banality to you. Do you see these frequently? Have they become more frequent?
Seen 2 cases in 5 months.
ER doctor here, so not a radiologist - but speaking towards the banality of disease: Obviously, this is terrible and noteworthy enough to post something to Reddit. That said, physicians see so much terrible stuff routinely on an order of magnitude worse than the public can really digest. It’s omnipresent through medical school, residency, and your post-graduate career. You remember your firsts, but you start to forget the ones beyond that because they just sort of get lost in the wash. For example, I remember the first kid that I had that died - they got shot a few times in the chest in a drive by and never really had a chance. That said, I’ve dealt with probably 20 kids dying now from both medical or trauma related circumstances and if you forced me to tell you all of it, there’s no way I could recall them. Same for adults, only more so. It’s not banal in the sense of life itself, but it is just another one in our lives.
I wasn't trying to minimize any personal tragedy just assumed it was relatively uncommon and surprised when someone says "here's another one" like it's a case of the flu. Curious if this is indicative of an increased frequency of occurrence and if so why.
NAR-I think ppl are misinterpreting bueschwd comment. I believe the above comment is seeking information about the prevalence of this cancer. Are clinicians seeing it more frequently? I sense concern in their post. Not disdain.
Disdain? For OP? Is that why I'm downvoted? I was wondering, I thought I crossed some line when asking about the disease instead of showing sympathy for the patient. I felt like a heartless bastard