grade 3 anaplastic oligodendroglioma

In terms of weapons in the arsenal, there is surgery, radiation, chemotherapy (temodar and lomustine), that's about it. You can think of the journey in terms of where you are on the therapy road, eg have you had your surgeries, can you have some more? Have you had radio, chemo? What have you not tried yet? Anecdotally, when you have exhausted all of the above, and the cancer is again aggressive (ie present and enhancing on the scans and the enhancement increases scan after scan) you are looking at about 2 years. However there are some things to try out, if you want to take an active role, virtualtrials.org/index.cfm

I feel for you. I lost my 40 year old son to a different cancer. It was terminal when diagnosed and he only survived 3 months. What we found was that he wanted to be treated normally and talked to about what was going on at home and the things we had talked about and done before he was diagnosed. And also make the time he had left as pleasant as possible with his friends encouraged to visit (some of course can't cope), and with his favourite music, food etc. He asked to have his bed put near the window so he could see the view outside. I tried not to cry in front of him.

Not morbid at all. (i'm a GBM patient)

I think we just don't know is the harsh answer. We all grow our own, :(

Hi CarlR

a warm welcome to the group. 10yrs.....that's a long time to be travelling this road. It's not morbid to be asking about what to expect in the latter stages of the journey. I asked the same things of the doctors when it was my late husband going through a GBM journey,

The long and the short of it is that there are no hard and fast rules I'm afraid. Everyone is unique and reacts in their own unique way. 

When our oncologist passed us into the palliative phase at the end of Feb 2023 he told us G had a few days maybe a couple of weeks. G spent 8 months in the palliative phase of the journey. He was still out running up until Aug 2023 and then walking miles or cycling in the garage on his static bike for hours up until 6 days before he passed away. In fact on the last day before things took a dramatic downward spiral, he had spent 3 hrs cycling in the garage in the morning. It was a massive seizure/stroke or perhaps the DVT he'd developed blowing that brought things crashing down the following morning.

Have you been introduced to your local hospice community team or the local community nurses? They were a Godsend to me over those last few months. Just knowing that there was someone on the end of the phone 24/7 who could help was a huge weight off my shoulders. The hospice doctor said to me at one point when I asked her how long she thought G had left that if you are seeing changes month to month then you're talking months, if its week to week then its weeks but admitted that they don't really know with any accuracy.

not sure if this reply has helped or hindered.

i can see some of the other members have shared their thoughts already and I'm sure others will be along. This is a safe and supportive space so please reach out anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

For now though I'm sending you a huge virtual hug and lots of strength.

love n hugs

Wee Me xx

Hi Carl

So very sorry to hear about your son.

My son who was 21 last week received his diagnosis of the same thing 4 weeks ago. He had his surgery just over a week ago and is recovering well. They only managed to remove about 60% of the tumour due to a risk to his mobility as the remaining 40% is quite deep rooted. We are waiting for an Oncologist appointment to discuss treatment.

Can I ask what type of treatment your son has received post surgery?

How is he at the moment? Is he well and coping emotionally?

I am sorry that I am not able to provide any answers to your questions as I cannot allow myself to go there at the moment but I do hope someone can help you with that.

Take care and a huge hug for your son xx

Elle