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37 year old with glioblastoma multiform stage 4 - life expectancy

Anonymous
Posted by Anonymous

My son-in-law was dignosed with glioblastoma multiforme stage 4 towards the end of September. The tumour has caused loss of his left peripheral vision but no other disabilities.

He is treated at the Royal Marsden. The doctors took a scan 1 week after the initial one (just after his ressection operation) and told him that they could see tumour growth in 1 week and that his tumour is exceptionally fast growing. Because of this they have condensed his treatment timeline - 2 weeks recovery after the operation; 2.5 weeks radiotherapy; 2 weeks recovery ; 2 weeks chemotherapy (PCV) and his is just now into 4 weeks before round 2.

He was told at end September that he has 2 month maybe a bit more to live.

We are now into the "bit more". The chemotherapy has made him more tired than the radiotherapy; but he still does everything as before, he just has to take naps.

How long may he have to live and how long will the end-of-life phase be and will he be disabled during this?

BrianR1948
Posted by

Hello

I know you have asked a nurse this question but as a Community  Champion, with a close watch on the glioblastoma multiforme forum, and as someone with GBM, and additionally as someone with clinical training, I have learnt and read much about this terrible disease. Perhaps though  you should regard this as supplemental to any other reply. You might also want to take a look at other posts on the glioblastoma forum which has much experience from those caring for loved ones.

Firstly, I am really sorry to hear about your son-in-law. He has such a terrible and rare cancer at such a young age. Both I and others on the Glioblastoma on-line Community forum, know about this from being carers, loved ones, or from suffering with it. We can be with you throughout whenever you need support or have concerns or questions beyond those that should be asked of those treating him.

He is being treated at a well-regarded hospital. It is good that he is still currently so functional. It affects everyone so differently, at each stage too, depending on factors such as age, other conditions alongside, the position of the tumour, its size etc,or  the treatments possible. From experience, I can say that chemotherapy can be very tiring, and cause fatigue. From my own experience and that of others, you should regard that as normal. Even now I sleep more than before diagnosis but slowly getting through that, long after any treatments ended,  other than regular MRI scans.

I am sorry it is not possible to answer your question on how long he might have. There are many studies on this but so often individual patients can prove it wrong as these research findings are across a whole group of patients. I learnt about a year would be good for me and as much as I could hope for, and here I am 20 months after diagnosis and feeling that I am still recovering. I am much older too and that often suggests a worse outcome.

For your son-in-law the ongoing chemo should slow the tumour growth and hopefully carry on the good work of the radiotherapy. Taking a worst case scenario, but only because you ask about further disability, it would depend what affect further growth might have. There could come a stage when sleeping is even more extensive and talking a problem, with short-term memory loss. Everyone is so different though is the mantra I repeat so often.

There are those who have considerable longevity, possibly years, although my experience has been that clinical staff, do not choose to give forward predictions. I am still hoping for much more than my nearly two years. Despite early serious setbacks, throughout 2016, 2017 has been a year of regaining ability and strength. I have much support from my wife, physically and emotionally. It has been vital. Key had been living for today, getting most out of it and keeping positive, despite everything. Hard I know. I took inspiration from accounts of survivors. The book by Ben Williams, a 22year survivor, has inspired and motivated me.

I wish both you, and your whole family, and especially your son-in-law, great strength through the journey no-one would ever choose, and send my best wishes. If you have any questions, this supportive community is here for you, at any time.

Brian

Take a look at my profile too. I hope you think it has useful information beyond my GBM, my Brain Cancer Journey.

Bill - Macmillan
Posted by

Hello.

I can appreciate that this is a really difficult time for your son-in-law and the whole family. I can add very little to what  has written other than to wonder if your son-in-law has been referred to a specialist palliative care team. When illness reaches the advanced stage then in the last few weeks an experienced palliative care nurse can be a terrific resource for symptom control and emotional support. Predicting how things may change becomes more of an art than a science when someone has an advanced and aggressive cancer, so having someone who is experienced in end-of-life care is important. They can play a valuable role in explaining what is happening and what can be done to relieve any of the many general symptoms that can occur, as well as end of life care related to brain tumours. Any medical professional involved in your son-in-law’s care can make a referral to get palliative care support. Resources to support people at home can be found through a search facility on the Hospice UK website. I hope that this is of some help to you. Please don’t hesitate to get back in touch through the community or by using our free support line. – Best wishes, Bill (Cancer Information Nurse)