r/braincancer • u/Comfortable-One-4880 • Feb 14 '25
New here.
05th April. Update
Half way through the chemoradiotherapy! (Alhough expecting adjuvant chemo aftwerwards)The dexamethasone, Chemotherapy, radiotherapy combination is beginning to get fatiguing but it is endurable as is the disability. Still feeling stoked. Keep strong everyone.. we've got this one day at a time... 18th March 20025
I (47M) have an inoperable/ undebulkable thalamic/right cerebral peduncle midbrain grade 4 glioma now classified as IDH wildtype and MGMT unmethylated. Yes I Certainly know how to choose my cancer badly!!!
Waiting for a couple of markers whilst therapy continues, but it is either wildtypr glioblastoma or, for better or worse an astrocytoma 4. I am waiting to hear back about my full genomic and further markers. I am wondering if there might be a very rare immunotherapy target but I am not holding my breath though.
I started temlozolamide and radiotherapy 2 days ago. I am looking at a whole dose of 54 Grays over 30 days. There is a reduction because of the midbrain targets which include my Pons. It feels good to being something active now.
My right thalamic cerebral oedema causes me significantly left side probs since I (was!) left hand dominant. It regressesto an extent but not completely and I have found adaptations in even the weke I have had symptoms.. The enhancing tumour was less than 2cm and still is even after firming up slightly after the initial diagnosis and biopsy.
Can document my journey further. Tumour genetics may be a mixed blessing when you've already started in therapy but I'll let you know what they say. As ever. Advice and hope welcome!
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u/Luvmgms 19d ago
I (47F with a different type of brain tumor), am new to all of this since November but can say that “hopewise,” you’re in the right place, doing the right thing. The more support communities I join, and more stories I hear from real people, the more calm and in control I feel. It’s hard in the beginning when it’s just you and Google but gets so much better as you start to hear from real people. Keep connecting, reading, and asking. 🧠 👊🏻
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u/Comfortable-One-4880 19d ago
Thanks. They ruled out oligodendroglioma very early on, and this was so aggressive radiologically they were even appeared to treat without a biopsy, that I did consent to. I don't know if it is my professional background but ai personally got the realistic idea earlier. My family are lagging a bit. I am happy to inhabit the present. But itis now I move into the realms of wondering what can be realistically achieved in terms of control and useful times available so that I can better prepare my loved ones for what will be and give what I can back to those around me.
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u/Murky-Neighborhood81 2d ago
Welcome (to the club u don't wanna be part of)!
Stay positive and carpe diem!
First thing I learned here: Accept ur diagnose and fuck ur prognose:-)
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u/Mundane_Sky_1994 Feb 14 '25
My tumor was higher up on my basal ganglia. It was malignant but slow growing. I had laser removal plus radiation and chemo.
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u/GizmoPatterson 2d ago
Highly suggest the brain tumor network! Free nurse navigation services to help with everything, as it can quickly become overwhelming.
I have a high grade brainstorm glioma. Did a year of tmz and radiation. I have now been on ONC201 for 6 years.
Stay positive, get support for you and caretaker and just enjoy life!
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u/Comfortable-One-4880 2d ago
Hadn't come across Onc201. Wondered if it might be appropriate for me or UK trials, will check it out!!
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u/GizmoPatterson 2d ago
It specifically targets the H3k27M mutation so if you have that then definitely look into it!
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u/Comfortable-One-4880 2d ago edited 1d ago
Still waiting for the last of the tumour genetics and my own genome so I won't know for some time if there are any immunotherapy targets. Still I'm ok this moment waiting to see like a scratchcard, (don't want all the answers at once!!)and finding value in my existence, so all is fine.
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u/Pure_Pen_2610 1d ago
You have such a positive attitude about everything. Thinking about you. Thank you for the update.
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u/chirp16 Feb 14 '25
I have a tumor on my medulla, inoperable, no treatment at this time. What are your neurological symptoms?
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u/Comfortable-One-4880 Feb 14 '25
Sensory left side, mild motor upper and lower limb and headache. Settled with dexamethasone to a degree. I'm sorry to hear about your position. Are they going to offer anything?
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Feb 14 '25
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u/chirp16 Feb 14 '25
I have a lot of numbness and weakness on the left side of my body. I figure there's probably no medication that can help with it which is why I was curious about your symptoms. I am seeking second opinions as I'm conflicted with watch and wait since I have symptoms. Any idea the size of your tumor?
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u/Key-Music576 Feb 18 '25
My tumor was middle of the left thalamus along with affecting Pons and basal ganglia. I was 44 when it was discovered and had 2 surgeries to remove most of it (GBM). Using optune and clear MRIs and thriving 5 years later.