April 2020

2 minute read time.

FormerMember

3 May 2020

This is now my 9^th entry and when reading through other people’s stories, I have to reflect and count myself as lucky to have made it this far. Though it also highlights to me on a 12-14 month prognosis that I’m now someway into that timeframe and that brings a whole new level of scary with it.

So, at the start of April and a trip to the hospital for 3^rd round of chemo and 4^th and last round of immunotherapy. It was the quietest I’ve ever seen places, it was like literally a world apocalypse and half expected to start seeing zombies! There with hardly anyone in the Cancer Centre and there were good precautions being taken with masks, hand sanitisers and questionnaires to stop people unnecessarily from entering the building. My bloodwork all came back at a good level, so I was fine to go ahead with treatment.

Coped with the chemotherapy about as well as last time, some nausea but no sickness and was still able to eat a decent amount. Took a little bit longer to get back to feeling “normal” this time though but all things considered it seems that I can tolerate it reasonably well.

However, the rash has kicked up again from the immunotherapy, so steroid dose has been quadrupled to bring it back under control. The massive steroid dose has made me quite irritable and snappy, which is also partly due to it messing with my sleep. I’ve also noticed that oddly on the higher dose my arm and leg symptoms of twitching and general control is worse than compared to being on a much lower dose.

Following on from my last entry I’ve managed to stop putting on weight and started to get it back under control. Doing Joe Wicks with the kids every morning in “lockdown” has also helped, so while my weight hasn’t overly reduced (only a couple of lbs difference over the 6 weeks I’ve been doing it) I can get my jeans on and done up and they fit comfortably! In some ways it has also given me an element of control over something by thinking and planning my days intake of food at a time when the world is completely out of sorts with itself. Even though there are times when I do feel like could just binge eat the whole cupboard!

All things being well with the rash clearing up, the plan will be to reduce the steroid dose right down which should also help with some of the fluid retention and my aim will to be able to get my wedding ring back on!

I also seem to be one of the lucky few that the Coronavirus hasn’t interfered with my treatment and I was back up the hospital for another blood test for a 4^th round of chemotherapy at the start of May. Bloodwork came back ok, other than a slightly reduced potassium level so I need to eat some more banana’s! I also had confirmation that my MRI due in May would also be going ahead and would be scheduled in shortly. (Fingers crossed!)

FormerMember over 4 years ago

Hello Xpio.

I have just joined this forum, and as with you , I have a GBN4 , this was diagnosed on the 29/04/20, it was a BIG shock as my wife and I were lead to believe it was a low grade, benign tumour. It all started on the 18/03/20, where I had a major seizure at home after doing an early turn at work, I was out of it for 1 1/2 hours. taken to hospital, and put in an induced coma for 5 days, when I came round , i thought it was all one big nightmare, discharged on the 24/03/20 with Keppra prescribed, I then continued to have mini seizures every day , where by, I could not speak, I wanted to but not words were forming. on the 09/04/20, it got so bad, my wife called 999, they took me to another local Hospital, where another MRI scan was carried out, and phenatonie was prescribed. Kept in for a week, had no more seizures, and discharged on the 15/04/20, with a letter to say that I was to be readmitted to the first Hospital for a Biopsy on my brain.

This was carried out on the 21/04/20, and was successful, biopsy taken and sent to UCLH for Analysis, I was discharged on the 29/04/20, only to be told that I had a GBN stage 4. well my wife and I were in bits.

I am a 63 year old man, who does not smoke, keeps pretty fit, has no previous history of cancer.

I find it hard to cry, I get very emotional , but just can not cry.

I am sorry if this is to much to share, but i feel i have to talk to someone.

I went yesterday to have my mask fitted, but they could not find a vein to put the contrast in.

I start my treatment on the 18/05/20. so hopefully they will have more of a clue as to my life expectancy then, i was told that i have 15 months.

Poonie
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FormerMember over 4 years ago

I'm sorry to hear your story and diagnosis. All I can say is that this bit "I have a GBN4 , this was diagnosed on the 29/04/20, it was a BIG shock as my wife and I were lead to believe it was a low grade, benign tumour." was by far the hardest thing personally that I had to deal with so far myself.

I had it in my head to begin with that with a bit of luck with a low grade benign tumour I might be able to get 10-20yrs out of it, to then walk into another appointment after a follow up scan and be told that the new scan showed it was highly aggressive and that the prognosis was the typical 12 months just blew me off my feet. Walking out of that meeting was the only time where it's really got to me as I just wasn't prepared to hear it and it's been the only time so far where I did sob for a bit. It was such a drastic change from the original diagnosis and prognosis.

In some ways you might find once the treatment starts it starts to feel a little "better", I say better loosely but it gave me a sense of right time to fight back. Get the Rocky music out and get yourself geared up for battle.

Oddly since the initial life expectancy I've never been told anymore or given a revised time frame, each time it comes up it comes down to how well the next treatment goes, or what the next scan shows. But then I've almost got to a point of well it's best to just concentrate on the now, I feel well and just make the most of it! And I guess talking about it helps and if you have any questions just give me a shout!
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