Hello everyone. My son (21) was diagnosed with a tumor of the central nervous system in March. He underwent surgery at the end of March and has been immobile ever since. At the time of the operation, the doctors thought it was an ependymoma because it was localized on the thoracic spine. Even the first pathohistological findings showed on the ependyma, but detailed examinations revealed that it was a diffuse glioma of the midline mutation h3 K27M grade IV. That diagnosis kills any hope of my child’s recovery. He was on radiotherapy and an MRI should be done in a month to determine the condition of the recurrence. Subsequently, Temodal chemotherapy was planned. If there is anyone with the same mutation I would love to get in touch. I am interested in how the body tolerates Temodal and what I as a parent can do for my child to go through therapy more easily. Are there any other medications used in the treatment of this type of glioma. From learning the diagnosis, spine surgery, immobility, coma due to hydrocephalus and shant implantation, I just want some positive news. From the tenth of March and from a child who hasn't had a cold for twenty years, we have come to very bad prognoses and I still can't come to terms with that. So, if anyone knows of any experimental treatment program or at least advice write.
Hi Sarajevo and welcome to the online community
I'm very sorry to read that your son has been diagnosed with a tumour of the central nervous system and that after an operation he is now immobile. I cannot begin to imagine what a difficult time this must be for you all.
I had a completely different type of cancer so can't help with any of your questions but I noticed that your post hadn't had any replies yet. Replying to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.
You could ask about what other medication is used for the treatment of your son's type of glioma in the ask a nurse section of the online community and clicking on the link I've created will take you straight there if that is something you'd like to do.
The best way to find out about clinical trials would be to speak to your son's consultant but you could also search for them on Cancer Research UK's website by clicking here.
While you're waiting for replies it would be great if you could pop something about your son's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
