6x weeks into the trial and when will I have my first MRI. Come on….!
Face 🫤 🤤 🥴 not obvious (yet) my face is different 🧐 . Not massive at all, not at all.
It’s something to think about and there trial. That’s the only I am thinking about.
The face has drops. Times yes. Stroke? It’s really weird…! People have things I stroke. It’s fine but different to before.
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Dexamethasone is a problems a number of skin diseases, severe allergies, asthma, lung disease and brain swelling.
Adults – you’ll usually take between 0.5mg and 10mg a day. I am having 4mg.
Dexamethasone has anti-inflammatory and immunosuppressant effects.
My 🥴 last night. But seems better today. I was 1am and couldn’t sleep about 3am. Then bits and at 5am. 6.30am and thought finish 🤞
Fatigue…extreme tiredness resulting from mental or physical exertion or illness 😩 That’s the hardest, but it’s fine.
I have going to the Wimbledon that’s on Wednesday. Palpitation in number again. I have an other which Wednesday? Who knows 👎 👍 (I had to go to Wimbledon to have my heart monitored) 🤔
Ahhh the trial is great is brilliant! 🐵
Oh I in there Marsden maybe some where in the middle 🙉 🐵 – come on!
Possibility back to Guys and chemo is one a possibility 🙈 🙉 🐵 nooooooo…!
“Have you noticed changes in your cognition after treatment?”
Yes…
Difficulty with memory ✅ Feeling like you can’t think clearly ✅ Fatigue ✅ Trouble multi-tasking ✅ Struggling to maintain attention ✅ Difficulty finding the right word ✅
Literally all them…!
Jx
Everyone with my friends and people. Thank you! Thank you!
So are they trying to work out whether it’s my ‘disease’. Harsh! 😔
Once there trial has started nothing really has changed since the trial.
With (Met-) my type of trial is quite small, that’s good for me 🤟 It’s difficult because it’s a new thing (new drugs). Therefore It is quite good for me. Exciting.
I definitely want to know how many people are on the trial – it’s intriguing.
But my case is rare, and so brilliant for the trial. I have to say to them everything so they can have all the facts.
It still might not work. But I am feeling good. I am more confident 🙌
I’m trying to touch my feet – not great. That’s my right side. I’ll send you some deficit now is different.
Remember this? Vebreltinib-side effects: Like steroids, they can you may gain weight, or your face, ankles and legs may swell. They’re fine I think. I’ll keep posted 🤐
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Epilepsy could become worse but definitely nothing yet. If you have epilepsy this could become worse when taking steroids. Bloody steroids 😬
Liver and if that’s good then great. Leg swellings are not great. Some people struggled in the drug. I think I have some swells but it’s good.
2x before for this drug was for you (different type of drugs) and really problems with leg problems. Again, these are potentially – not today for me.
Older apparently (which is nice) I am younger(!) Can I feel things on my right leg, not great my right side.
Any more palpitations… same as before but need to keep an eye on this. This can be serious, especially for me.
The heart is a fluttery 🫀 and can go up and down up and down. Not just because of the drugs. This is the normal in this trial. I’m fine right now but there’s this in the weeks and months and years…! 😁
My thyroid is low. The thyroid is gland in the neck. It produces hormones that affect things such as your heart rate and body temperature.
My arms and biceps are working good. Said my aren’t very brilliant and not great. It’s difficult but I can not try and make muscles 💪
Every week it gets harder, toxicity will be harder. I will get more symptoms and we will see how it goes.
The ‘sponsor’ is very good 😊 Therefore they will give me an MRI, because my CT was good. Good stuff.
…
How are you before your first scan, hopefully you don’t have to have any more steroids. Bloody steroids…! 🧬
I can’t believe it. I was writing a blog. And I hit the delete. Anyway…here’s a new one. They’re not the same but never mind…!
Nooooo!
Seizure 🙄
It was small, but that’s irrelevant. It was a 3/10 which is small (the last one I gave, I get it on 8/10).
My friends came for a coffee last week. I just didn’t great and I was nervous which is very unlike me. It’s weird.
The trial has very serious potential. That’s why I am very happy I am doing this trial. How many people on it? It’s irrelevant, just intrigued. I am going to ask tomorrow…!
It still might not work. But you are very for us ‘I can learn people on it and there trial’. That’s alright you need to think…tell me m us everything but the doctors. Nothing is irrelevant.
Please was not my words, but there trial but she said ‘you’re really doing well’ 😌 The doctors said ‘that’s doing well. We are confident’. So great!
That said, am I anxious? That’s a new one for me. I am very feel that to me. Unfortunately, it quite difficult for the trial people too have in anxiety. Maybe that’s nervous but that’s different I think.
So are they trying to whether it’s my disease. It seems quite harsh work to true.
Memory essential and word currently is okay. It takes me a long time to write this long. The problem is I quite liked it when I write one. Cathartic. So that’s good!
My memory and word finding is difficulty. I do think is getting worse. But I will keep that wraps and there see how it goes.
My muscles okay, nothing worse like when I couldn’t in the when before when my face dropped during my seizure 😵
I have also had some stairs is annoying. I just go slowly and that’s it. Again that’s something I have to become the normal.
…
All good though 🤟🤟🤟 (except I forgot the message I’d completed yesterday – so annoying)…!
Jx
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I can’t believe it. I was writing a blog. And I hit the delete. Anyway…here’s a new one. They’re not the same but never mind…!
An electrocardiogram (ECG) be used to check your heart’s rhythm and electrical activity ie. pounding, shortness of breath, chest pain and lightheadedness, etc.
A Holter monitor is a small device that records the heart’s rhythm. It’s used to detect the risk of irregular heartbeats.
A Holter monitor test may be done if a traditional electrocardiogram doesn’t provide enough details about the heart’s condition ❤️
…
This is a big day because I potentially could hear “sorry James, you cannot continue on the trial, only chemo”.
To think my heart could potentially scupper it…that would be a shitter… 😬
Pills – 4x every day… 💊 (2x in the morning, 2x in the evening) 💊
Quiet is a lot of pills that’s good. I’m happy with that.
I needed go to hospital there until the afternoon, I was okay to go home.
And there was any issues, I would be at the Marsden for a week and at home. I would be back there on Monday.
FYI I this was my new regime. Monday was a time at the hospital to check was alright. Then the A new week of having the trial drug at home. Every week.
The difference was different was that every at the the hospital what is hopefully was less and the 0300am became more preferred. Hopefully it it would become about midnight.
The doctors were hopeful that I would be able to become a more normal 😬 . But this was going to possibly and this is the bits where it works.
I am a guinea pig essentially. And that is what I was fine with that. Somebody has to!
If you look at the my there possible side effects, you can see what I mean…
A lot of potential side effects…
…
Anyway…
Because I have a lot of time as I am right-handed, I was trying to and learn my left side. This is so difficult.
If you remember as before, I was trying to get my words better. I am still very difficult. Realistically this Will be different for My whole life. My speech is getting better but very very very differently.
This is my ‘communication advice sheet’ which I have sent you before:
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When I first left Guys, this was what my I was talking. This is was there early April:
😖 🤔 😖
I’ve have quite off of videos where I was feeling like this. This is a really horrible thing to read. Although this is getting better, it is very slow.
Although the writing is getting better, it is also very difficult. My videos are very hard to do and take for a long time. The good thing is that I enjoy them. Weirdo!
So as the speech is getting better, I will ability to write is probably worse than ever before. I’ve got to keep doing of lots and lots of try.
When I was at the Marsden at the hospital, I tried to get my to get my writing to better and my speech. I am not sure which is more valuable.
The examples are where made at the Marsden above (1x week ago). If you listened or read what I tried before, it is not jargon. Rubbish. Anyway that’s why things like iPads are brilliant and great.
I have of other examples of if anyone is interested…probably not…! 🤭
I am trying to people to see speech, occupational therapists and physios. Together I have with somebody with a NHS to help me. I am so great please about this. People that I work with absolutely angels.
Thank you.
Jx
Ps. I thought a happy maternity hospital in the was better than a cancer one option! 😆
“All cancers begin in cells. Usually, we have just the right number of each type of cell.
If any of these signals are faulty or missing, cells might start to grow and multiply too much and form a lump called a tumour.
After my surgery in April, my tumour that was removed was sent for testing to look for genetic bio-markers and mutations (DNA sequence that causes disease).
These tests revealed a rare genetic mutation called ‘Met Fusion’. This mutation causes proteins to bond together and this makes the cells mutate and form a tumour.
The Royal Marsden is currently running a Clinical Trial for this exact genetic mutation.
It is apparently more common in lung cancers, but they are also looking into how they can treat the mutation in brain tumours.
The trial involves taking a new drug. It doesn’t it doesn’t have a name yet, just a code APL-101.
The drug is known as an ‘inhibitor’ as it inhibits the bonding of the proteins that cause the tumour growth, so the hope is that whilst on the drug the cancer will stop growing”
Needless to say, I had never heard of APL-101 before 26x days before I could’ve started the trial a little bit earlier.
The drug is not made in the UK.
My first day at first Marsden was 04/07. I would stay there for 2x nights. I will be in good, this is the only night I will be staying here.
The Marsden is a cancer specific hospital, not brain tumours specific. It’s small. But that is brilliant because your personal case feels very personable.
The first thing I needed to go was must go my vitals done but once they were okay, I was okay to start the drugs.
These drugs would come in to pills in form. Therefore, that First dose came on 3pm.
That means that the 2x dose came at about 3am. A bit annoying but as the this will be the norm during the trial. Once the drugs settle it should get better. For the time, this was the new norm.
I have to have the pills at specific times. The idea got me a bit scary and a quite nervous. Not usually but enough to enough to use some emojis…! 😬😱😬
I still need to take my usual pills (in daytime and) the evenings. These are my epilepsy ones essentially.
I counted the number of pills I will be having each day, the number was 21x…geez!
💊💊💊💊💊💊💊💊💊💊
💊💊💊💊💊💊💊💊💊
Although it was 3am to be fair. I wasn’t sick or I had no a headache. A bit of being sleeping 😴
It’s was good. Thanks everyone. See you in the morning…!
2x days before my trial was to start, I feel really weird. I couldn’t talk again.
It in a my nature to it make it okay fine and I’ll be alright. I am usually a ‘I’ll be fine’ guy.
It’s difficult to tell people when they know you. I just thought how it goes in a minute…but maybe not.
But they’re more and more this yes is happening I need this to be with a serious.
…
I went to my room. I was with one of my friends and my dad. You can see this on video but it was a lot worse once I hit stop. I think I will keep recording a video next time. Is that weird?! 🤔
I want usually to have a Clobozam. I did have one. However I thought take it.
Clobazam is one of my drugs that I use in these use in tonic clonic/partial seizures. That was pretty rubbish for me to forget and not have it in my locker 😳
My arm was totally numb. I could not feel it at all. I was trying to lift it up but it was But it was pointless. It was not a piece of my body.
An ambulance came to my house after about 20x minutes. The seizure (typically) started stopped paramedic got there. That said, he was very happy if I wanted to to come to the hospital. If there are neuro issues, I think with the paramedics go for the safe side.
Hopefully there trial causes no issues. The trial it’s probably a good experience for doctors. My experience is the only way they can give I can see it working or not.
Come on Monday and I am very happy to do what I need to do.
~ astrocytomajames ~ 