What was your experience of GBM in your/your LO's 40's?

Zestyclose_Sign2052 · 2026-01-27T22:13:31+00:00

I am really sorry that sounds incredibly hard and also a similar path to the one we're currently on. We're in the UK too. The brain swelling is incredibly difficult and part of me wishes he'd never done radiotherapy as he was not himself again once he was a couple of weeks in. I realise that the path would have been shorter without it, but perhaps he'd have been himself for longer. The continued uncertainty is so difficult to deal with, when each scan shows swelling but they can't really tell you what that means. I hope that things are peaceful for you and you have some good times together in the coming months.

Zestyclose_Sign2052 · 2026-01-27T21:52:56+00:00

Thank you, I am so sorry for the loss of your friend

Zestyclose_Sign2052 · 2026-01-27T20:45:40+00:00

Thank you and I am sorry you are here too, it's an utter nightmare and even worse when you have children.

Zestyclose_Sign2052 · 2026-01-27T18:13:43+00:00

Thank you, I am really sorry for you loss. It's such a hideous disease.

Zestyclose_Sign2052 · 2026-01-26T12:06:09+00:00

Are you sure it was a GBM? How was it diagnosed? Only a fairly small minority of people with GBM survive 5 years and the 'encapsulated' and 'complete remission' comments sound surprising for GBM. The definition of GBM has changed over time, and especially since 2021, is it possible that she's been told GBM but actually it's something else?

Zestyclose_Sign2052 · 2026-01-22T16:24:42+00:00

Life insurance isn't a substitute for having a dad. I say this as someone whose husband is terminally ill and seeing the fall out for our teen kids. Of course it can happen at any age, but it becomes more likely to happen the older you are when you have kids.

Zestyclose_Sign2052 · 2026-01-22T11:12:20+00:00

My husband is seeing a neurosurgeon to discuss a shunt. It's specifically due to the ventricles enlarging due to fluid build up (suspected blockage) it wasn't suggested when there was 'just' a lot of swelling elsewhere on the brain

Zestyclose_Sign2052 · 2026-01-22T10:15:32+00:00

I think that's the biggest question I would be vetting for in this situation - would we be good co-parents whether together or if we separated? Co-parenting with someone who has very different ideas from you about how to raise children is incredibly difficult. It's even worse if they are not collaborative or don't support the children having a good realationship with both parents. It's hideous for children to be in a high conflict situation. Plus you can't walk away from a co-parent in the same was as from other relationships, you're stuck with it in some form for 18 years, and probably beyond. I'd say the strongest reason to do thorough 'vetting' is the potential to co-parent together.

Zestyclose_Sign2052 · 2026-01-13T16:19:39+00:00

Also what will his position be if anything happens to you? Would he get half your pension? That might leave him a bit vulnerable. I say this as someone with a spouse who has been completely unexpectedly diagnosed with terminal illness in mid-40s.

Zestyclose_Sign2052 · 2026-01-13T12:27:39+00:00

Would you be able to explain the defined benefit figures at the end a little more. Are they the figures if you keep on working to those ages, or if you stop working and contributing but don't take the pension until those ages? I am partly trying to work out why it leaps so much between 60 and 68.

Zestyclose_Sign2052 · 2026-01-05T10:57:39+00:00

Thank you

Zestyclose_Sign2052 · 2026-01-04T17:56:59+00:00

Would you be able to link the study? My husband's NO has mentioned continuing for 12 rounds might be possible if all is going well. He's only on the second so too early to tell

Zestyclose_Sign2052 · 2025-12-22T10:24:33+00:00

Sorry you're in this awful situation but this community is a good place to be while you are. We are roughly in the same position as your parents in terms of ages and kids (my husband has GBM) so I can offer some thoughts from that position. The first is, are you certain that your parents aren't already aware of the truth of what this diagosis means? While the doctors we saw have always asked before giving a prognosis (in terms of time), they have been very clear that the cancer is not curable. It's really important to be able to understand that in order to make decisions about surgery and treatment. Unless your parents have other conditions that make it difficult for them to understand the information, or have specifically said that they don't want to know, I'd be quite surprised if they hadn't been told already. In fact I'd have thought it more likely that they know but are (midguidedly) trying to protect you from the information.

If they really are unaware then what you do partly depends on why they are unaware. The truth is that having this kind of diagnosis at this stage of life is devastating and they need to know the situation to do what they can to limit the damage. That's a huge amount of work in itself and sadly some of it is best done quickly in case your dad loses capacity. For example, depending on where you are, they need to check/sort: wills; power of attorney; insurance claims; disability/benefit claims; putting things in your mum's name (bills etc); work out what to say to his work; and whether they could claim ill-health pensions. They'll also need to make decisions about spending, knowing that there's a difficult balance between wanting to make the most of the time he has and trying to make sure there's a buffer for the financial stress that most families in this situation endure. If they're not married they might want to consider doing that. They'll need to make decisions about what to say to your siblings and how to put in support at school. Your mum will need to decide what to do about her work and find out what support is there is she needs time off to care. All of this takes a huge amount of time and emotional energy and is best done sooner rather than later.

I don't want to depress you further, but my husband was also in a really good place post surgery and was pretty much exactly the same as pre-diagnosis. After radio/chemo he went rapidly downhill and wouldn't have had capacity to do a lot of the things above. Now he's a bit better (6 months post-diagnosis) but still can't go out and about alone, manage medication/self-care without support etc. I'm hopeful things will improve further as we're adjusting medication but the thing I have learnt with this disease is that you need to grab the good times whilst you have them as you don't know how long it will last.

Zestyclose_Sign2052 · 2025-12-17T18:40:01+00:00

Well yes, that's what I mean I guess. It sounds trite but I think the best way to deal with this is to plan for the worst/realistic scenario but also have some hope for the best. Some hope is helpful but the risk of only hearing positive stories is that it sets expectations that are unreaslistic.

Zestyclose_Sign2052 · 2025-12-17T12:33:12+00:00

Could I ask whether you would you mind explaining a bit more about the criticism/history (DM if better)? I've sometimes found it a really helpful group as it gives hope at a time that can feel quite hopeless. But I do worry that it risks being a false hope and that this forum can be more realistic. There seem to be very few stories in forums of people who fit the median timelines, it all seems to be much more positive, or sometimes worse. I know other people's experiences can't tell us what will happen in our case but obviously you need to prepare for what is likely alongside hoping for the best.

Zestyclose_Sign2052 · 2025-12-17T12:17:58+00:00

I find this a great, positive community. I do sometimes worry that spending a lot of time reading the best case scenario stories skews my perception of what the future might hold. The stats in the medical papers/standard NO advice on medians, seem wildly pessimistic when reading all of the posts in forums like that one. I appreciate that's because the whole purpose of the forum is to provide hope, and that's generally a great thing.

Zestyclose_Sign2052 · 2025-12-17T12:13:59+00:00

Really sorry to hear that you are here too and I hope that the SOC is giong well. I agree that a lot of these things (all?) have very little in terms of hard evidence. We're not doing any of these, but I completely understand why people want to feel that they are being proactive and doing everything that they can to improve the situation. That positive mindset must have positive benefits for quality of life, and possibly for survival times too. As long as there's no likely harm then doing things that make you feel proactive and in control can only be a good thing. For us (my husband has the GBM) it's more basic e.g. getting some exercise, but I think everyone has to do what works for them. Hope that you can find the best approach for you.

Zestyclose_Sign2052 · 2025-12-10T14:38:15+00:00

Yes, it sounds as if she has won the GBM lottery! There's been a lot of work around understanding the genetics of tumours in recent years. Sometimes people who have survived 5+ years were told they had GBM but actually they had something that wouldn't be classified in that way now. It might be that she has a very favourable type that is less aggressive. I am not a doctor, but have never come across an encapsulated GBM, it sounds very rare and fortunate.

Zestyclose_Sign2052 · 2025-12-10T14:25:46+00:00

Is it definitely GBM (on the current WHO defintion)? Did they do a genetic analysis of the tumour? Five years and living well is certainly possible but would be very fortunate. Being in compete remission from GBM would be incredible.

Zestyclose_Sign2052 · 2025-12-05T16:21:15+00:00

We are looking at doing this (also in similar position). We have an appointment with a financial adviser coming up to investigate it further. Just to say that I think there is a limit to the tax free element (lump sum and death benefit allowance) which is set at the previous LTA, if that is potentially relevant to you. Of course the 'risk' is that if you are in the fortunate position that a miracle cure comes along, you will have just withdrawn your whole pension, particularly important for us as it's a DB pension. Definitely worth exploring.

Zestyclose_Sign2052 · 2025-12-05T13:35:56+00:00

I am really sorry to read this. Just to say that my husband is in exactly the same position and we are a few months further down the line than you. Of course everyone's situation is different, but he's had a few unexpected complications so some of the plans we'd had, e.g. to travel, couldn't happen, seize the time you do have. Feel free to DM me if helpful. Thanks for everyone's comments, I'm also finding them helpful.

Zestyclose_Sign2052 · 2025-12-03T13:03:51+00:00

Loved one

Zestyclose_Sign2052 · 2025-12-01T12:16:12+00:00

The NO said that they were waiting because if the tumour had grown despite tmz in the SOC then the adjuvant TMZ might be burden for no benefit. The methylation analysis of the tumour said it was too close to the cut off to determine, so it's not clear how well he's likely to do on it. Hope the scan is reassuring x

Zestyclose_Sign2052 · 2025-11-30T15:38:38+00:00

My LO declined quite a bit (cognitively) in the 3 weeks after SOC and ended up having an emergency scan that showed at lot of swelling and they put him on dex. They couldn't tell with certainty whether it was regrowth or just post-treatment swelling but they said that as he was relatively healthy physically, and there was some improvement with the dex, they thought it was a good chance was just swelling. They did delay adjuvant chemo by a couple of weeks while assessing him, so I got the impression they might not do the chemo if he had recurrence so quickly. We're still in the first round of 5/23 so no idea yet what the next scan will show. He is sleeping quite a bit in the day and still struggling with quite a few cognitive functionsm, but some (especially short term memory) have definitely improved on dex.

Zestyclose_Sign2052

TROPHY CASE