Tumour regrowth

Hi Slh,

Well, it's great to hear he's still remaining so stable with regards his symptoms. 

What did the consultant say about the regrowth? Are they going to plough on with TMZ or was there any discussion of using lomustine or another chemo agent?

As you know there's just no standard timescale for these things. Our consultant originally said 2 years when my wife was first diagnosed and it was around the 18 month mark when her tumour started to return. That sort of timescale seems a fairly common pattern in younger (<65) patients who tolerate the surgery, radio and TMZ treatment. BUT...there are several people we've had here that have gone on considerably longer 

What I would say is that if there's now regrowth to stay really vigilant for symptom changes and to let the CNS know if you're worried about anything. In my wife's case this led to withdrawing the TMZ as it was clearly not doing a lot anymore. As difficult as that was it was actually a relief to then be able to concentrate on living rather than fighting. 

Sending you a hug,

Chris

Thank you for your message Branoc, I'm so sorry for your loss of your wife.

We have another month for an appointment for the consultant.I'm imagining they may offer different treatments or none at all.

Yes he's coming up 57, still young.

Hello Slh 

My late husband had 3 months of TMZ after the chemo, radio round before regrowth. He was 51 then. He underwent another surgery, followed by Lomustine which again lasted for 3 months. Hr was pretty much active throughout and as you said except for weight gain and personality changes no one could say what he was going through. Only towards the last 3-4 months he started getting more tired, sleepy etc. 
Our consultant gave 6-12 months originally but he lived for 22 months. But as Branoc says this varies from person to person. 
take care. If possible try to get your consultant appointment forward. 

Hi Slh

if only we had accurate time frames here life for everyone would be so much easier.

My experience lies in supporting my late husband through the 3 years of his journey (you can read the gist of the tale in my bio) He was 50 when he was diagnosed in Sept 2020. His tumour was debulked and he underwent the initial 6 weeks of treatment then declined all further offers of treatment. He was a fitness freak/marathon runner and he remained physically fit right up until the last couple of months of his journey. In Sept 2020 we were told he had 12-15 months. There was no regrowth until October 2022. When we spoke to the oncologist in Nov 2022 he offered G further TMZ and he declined. He remained reasonably physically stable until Aug 2023. Things did slip cognitively but he was still running every day until Aug/Sept 2023. He passed away on 27 Oct 2023, three years two months and one day after his initial diagnosis.

Read into that what you will. 

Everyone is unique here and these tumours don't appear to behave the same in each person, just adding to the complexities. As Chris says now is the time to watch for changes that concern you, no matter how small they may seem and I would encourage you to alert the medical team to these. Some of them can be levelled out a bit with steroids and drugs like Keppra. Others they can do little for sadly.

Towards the last few months of G's journey the hospice dr told me that her rule of thumb was that if you're seeing monthly changes then the person has months, if the changes are weekly then she thought in weeks not months. Right up until the week before he passed G was convinced he had another 6 months... denial was one of his key coping strategies.

This is an emotional rollercoaster of a ride so please make sure you're taking care of your wee self here too. Don't underestimate the toll this is taking. Be kind to yourself.

Sending love and light and hugs and lots of strength

Wee Me xxx