Brain Tumour - Glioblastoma Multiforme IV
Discussion
I rely on PH for so many things, and another unknown scenario arrived with bad news in our family on the 23rd December.
My wifes dad collapsed and was taken to hospital with a suspected stroke. They told us that evening that he had a serious brain tumour, and was being transferred to the neurosurgery unit at Glasgow Southern General (one of the best of it's type in the world).
After scans and a biopsy on Christmas eve, we found out it is a rare type of cancer, the tumour is developing quickly, it has only been there for circa 6 weeks, and is inoperable due to it's location. The surgeon told us at this point that he would have only weeks to live if he had no treatment, but with treatment he would have 'weeks to months'.
Stats from past years give a median lifespan of 7 months, although we have been advised there have been treatment advances in recent times which could change the values reported. For obvious reasons, they keep saying every individual is different, so look at life day/ week/ month at a time rather than look at stats.
He is receiving 6 sessions of radiotherapy currently, which they have told us is the maximum radiotherapy treatment he can get without causing incremental brain damage. He is also on 3 tablets a day of Dexamethazone. He may then get chemo depending on his condition and the next scan result in 6 weeks. Apart from extra tiredness, it is hard to notice much difference in his manner or appearance.
He just turned 65, and retired 3 months earlier from a professional job. He is very fit as he is cycling mad, and rides twice a week for 40-50 miles each time with a group. One of the few 'Bucket List' things he has always wanted to do is ride over the Applecross Pass in the north of Scotland, so we are hoping he will have the ability to do this around April. He is keen to travel to Fuerteventura with his 4 kids/ 4 grandkids in June, but we have no idea of his likely health state, or about things like travel insurance.
The various members of the family are all in different stages of dealing with it (from outward denial, to proactively trying to make the most of his remaining time). My wife and I have been in contact this week with Maggies, and they have been really helpful.
I am trying to support my wife and the family as best as possible, and am wondering if anyone can offer from their own experience what the next few months are likely to bring with the tumour and his likely reaction to treatment.
Thanks all in advance.
kiwi
My wifes dad collapsed and was taken to hospital with a suspected stroke. They told us that evening that he had a serious brain tumour, and was being transferred to the neurosurgery unit at Glasgow Southern General (one of the best of it's type in the world).
After scans and a biopsy on Christmas eve, we found out it is a rare type of cancer, the tumour is developing quickly, it has only been there for circa 6 weeks, and is inoperable due to it's location. The surgeon told us at this point that he would have only weeks to live if he had no treatment, but with treatment he would have 'weeks to months'.
Stats from past years give a median lifespan of 7 months, although we have been advised there have been treatment advances in recent times which could change the values reported. For obvious reasons, they keep saying every individual is different, so look at life day/ week/ month at a time rather than look at stats.
He is receiving 6 sessions of radiotherapy currently, which they have told us is the maximum radiotherapy treatment he can get without causing incremental brain damage. He is also on 3 tablets a day of Dexamethazone. He may then get chemo depending on his condition and the next scan result in 6 weeks. Apart from extra tiredness, it is hard to notice much difference in his manner or appearance.
He just turned 65, and retired 3 months earlier from a professional job. He is very fit as he is cycling mad, and rides twice a week for 40-50 miles each time with a group. One of the few 'Bucket List' things he has always wanted to do is ride over the Applecross Pass in the north of Scotland, so we are hoping he will have the ability to do this around April. He is keen to travel to Fuerteventura with his 4 kids/ 4 grandkids in June, but we have no idea of his likely health state, or about things like travel insurance.
The various members of the family are all in different stages of dealing with it (from outward denial, to proactively trying to make the most of his remaining time). My wife and I have been in contact this week with Maggies, and they have been really helpful.
I am trying to support my wife and the family as best as possible, and am wondering if anyone can offer from their own experience what the next few months are likely to bring with the tumour and his likely reaction to treatment.
Thanks all in advance.
kiwi
I wish you all the best; my first - late - wife had astroblastoma (from memory) which was slow-growing, benign and not aggressive but led to hydrocephalus which then led to her brain tumour finally being discovered. The brain tumour was due to a genetic fault, which of course has its own implications for the kids (do they have DNA tests or not? I believe non of my first wife's kids - my stepkids - went down this route).
It will be a rough rough ride, regardless of any short term outcome, but you have sussed that
? You will also be surprised that you can/will survive it, heartless as this sounds - come back in a few years, look back and you'll see what I mean 
.
You have my sympathy - let us know how you get on .
It will be a rough rough ride, regardless of any short term outcome, but you have sussed that
? You will also be surprised that you can/will survive it, heartless as this sounds - come back in a few years, look back and you'll see what I mean .You have my sympathy - let us know how you get on
.Hi,
We sadly lost my Mother-In-Law to this exact type of tumour Xmas last year. It really is a horrible thing to have happen. Like your Father-In-Law my MIL was healthy, fit, didn't drink to excess, didn't smoke. Life can be bloody cruel sometimes.
Everybody has different experiences of cancer so comparing experiences is difficult and needs to be done with caution. In short, tell him to enjoy life - do as much as he can now - don't wait.
I've sent you a PM with my email address - more than happy to discuss it further.
All the best to you and your family with the tough times ahead.
We sadly lost my Mother-In-Law to this exact type of tumour Xmas last year. It really is a horrible thing to have happen. Like your Father-In-Law my MIL was healthy, fit, didn't drink to excess, didn't smoke. Life can be bloody cruel sometimes.
Everybody has different experiences of cancer so comparing experiences is difficult and needs to be done with caution. In short, tell him to enjoy life - do as much as he can now - don't wait.
I've sent you a PM with my email address - more than happy to discuss it further.
All the best to you and your family with the tough times ahead.
Edited by breamster on Sunday 20th January 09:50
Fraser, gutted to hear this - lost my dad to a brain tumour when I was 12 (was 52), please pass on my thoughts to Vicki et al. As you say treatment methods are always improving, so hopefully timescales can be deep into the better end - either way I am sure you guys will help him make the most.
TC.
TC.
Thank you all for your thoughts and advise. We are going to his last radiotherapy appointment today, and apart from tiredness it has not appeared to have had any side effects. A scan in 4 weeks will see if it had any positive impact.
Taking life decisions and commitments week to week at the moment, and determined to create good memories in everything we do. He doesn't have a bucket list as such, but there are a few things he has talked about doing, which we are planning at the moment.
kf
Taking life decisions and commitments week to week at the moment, and determined to create good memories in everything we do. He doesn't have a bucket list as such, but there are a few things he has talked about doing, which we are planning at the moment.
kf
Mrs Muttleysnoop said:
Really sorry to read. Re travel insurance ask the hospital Cancer Information dept which hopefully they have. Bear in mind insurance will be very expensive, I was quoted £1000 for a 7 day trip to Monaco last year!!
Good advice thank you, we called the Macmillan Nurse who has given us a contact. The company suggested said they will cover him, but we need to call them 6 weeks before he plans to leave. They will contact his consultant's office to assess his suitability to travel. As long as he is fit enough to do the flight, then chances are highly likely he will get cover for around £500 a week.
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