#55…
Everything happens for a reason…(in a week) 🙏🙏🙏
Noooo ☹️
#54…
Last night I had a seizure (25th June).
It’s probably the worst one For a 6x months?
I was fine. I didn’t pass out. My mum called a ambulance but it wasn’t required. It Took me about an hour to fully be okay again.
Oh well. I was probably due one to be honest…
Everything is good and I will be down at her hospital on Monday morning 👌
Jx
Ps. I choose to put a picture on my blogs. This one of Ava is pretty sweet. But there isn’t any relevance…! She is very sweet though 🥹
Who knows what this will work..! 🤞🤞🤞
#52/53…
Before the trial, I had to have lots of tests on my heart and liver.
To these safely, start of the trial was delayed. Only for one week but I was really wanted to starting. Safety for the first…
I had to a electrocardiogram (a standard ECG) and an echocardiogram (or ultrasound scan). I will be having one of these every week.
Anyway that was on Monday and the results were positive. Great.
Next was Tuesday and that was seeing the physio at Guys. Done.
Wednesday was a long day back at the Marsden. It was a good time to see the Doctors and Fellows as it these are the people I will work with my trial (fellowship is the period of medical training may undertake after completing a specialty training program).
Obviously my seen I have been with for the 4x years Will be seeing them a lot at Guys and Kings. But for the time being, I was with people at the The Marsden.
I had a swabs (5x). Again I will be familiar in there the come thing months. Also, there will have waiting that I have no problem with this. Years on this trial works fine with me!
There is a drug which I’ve used since from my diagnosis. It’s a one called Omeprazole which is very common. I’ve been taking this for 4x years to stop heartburn caused by stomach acid.
The trial docs have to keep on to know exactly I am having.
I am not to have a grapefruit because it messes with my enzymes. How did someone work that out?!
Okay all set at Marsden. Good job I actually do not like grapefruit…!
Friday I went back to Guys and see the occupation team. The test you can see on the picture, Took me less than 1x minute in my usually. It took me over 5x to do the same exercise…! I couldn’t work it out.
So what now? I have 2x days at Home before. And hopefully some news about the trial. Let’s see.
I have 2x Days in there Marsden. A lot of checks to be I am okay. I believe I will be checked every hourly Night and day.
What have I done…! Joking – I am looking to starting. Bosh!
Jx
Ps. Leila and Rachel my amazing friends were going to the Cancer Research for a and some fun raiser. I was going to see you but it’s probably not for the best After last night. Have a great girls and smash it…! Have a great time xxx
What a glutton for punishment…!
#51
It is mid June and I have put the part of my blog. This is quite a in blog because…oh…which you will see later…
I started I had my first cycle of my Carboplatin And Etoposide. This was going to the first of six this would go in for October.
As I said before, this was going to be quite a slog in all senses. I now have a glioblastoma (diagnosed in April 2022). This is the most grade primary brain tumour.
They are:
• fast growing 🙄
• diffuse (meaning they extend into other parts of the brain) 🙄
• likely to spread within the brain 🙄
• may come back, even if intensively treated 🙄
That said, I have been given some interesting and intriguing since this diagnosis but I am no brain specialist…!
April 2021 – Blog #29
“Clinicals trials are usually seen as a last resort in a person’s treatment. They give a glimmer of hope to those who have exhausted all the other options and although that is often the case, it isn’t exclusively true. Many trials focus on newly diagnosed patients and those in good health who are willing (and perceived able) to take one.
This is a worldwide trial headed by professors in California in conjunction with Guy’s neuro oncology team and other research centres across Europe.
I opted to I decided to go for the chemo option.
A huge part of me wanted to participate in the trial but I needed to do what was right for me (considering all aspects)”
April 2022 – Blog #44
(I sent this message was after my last operation. The say something that made sense was totally impossible)
“I’m not I being do this blog for longer in my current state.
The 1x text I have typed so far has taken me nearly 1x hour. It is crazy. I can’t talk.
Although the is hard to say things that to us say it in texts. I cannot to say it so frustrating although is to get better in the in the future it is all fall at the moment.
I can read in my head what but I cannot say but I what I am trying can’t say.
This is terrible?!
I cannot to in this in be things soon I need to stop an hour and think about this”
May 2022 – Blog #45
From Dr A~
During your surgery, as there was fluorescence under blue light the surgeons made a decision to resect a bit more as this was evident of tumour, and not radio necrosis. This therefore meant, your speech and right side would be affected temporarily as they have irritated that area. I am pleased there are no complications following your surgery, and went well. We know there is a residual tumour (that surgeons were unable to resect) as this would have caused permanent deficit.
With gliomas, they can transform to a higher grade. I’m afraid this has been the case with your tumour sample reviewed. It has now been diagnosed as a grade 4 astrocytoma which fits with the changes, we saw in your recent MRI scans.
June 2022 – Blog #51
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).
Hopefully, this will use give a better idea of what is causing my tumour to grow.
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.
Guess what? I meet the trial criteria that’s pretty amazing to be honest.
Only 200x patients will be enrolled at different study sites in North America, Europe and Asia 😳
So…next stop Royal Marsden and explains time I have been recently there… 👏
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 🙏🏼
I told you I am no brain specialist. I but hope some of it is true!
🤭 🧐
Jx
FYI the trial will be starting on Monday 4th July but doesn’t have a finish day. I hope I like it!
One (nearly) down…
#50…
I was at Guys at the gym again. After started few easy stretches 💪 After 20x minutes and physio, my right arm was going odd.
I had 3x three minor seizures…
I guess the gym caused the seizures but I didn’t eat before. That would Probably was the great idea.
I sat in the hospital gym for about an hour and there were no more problems after. Mum had come with me Ava so she only wait outside and As the rain fell… 🌧 It was fine though. All good 🫣
I’ve had session the another since the gym and they have been useful. They also give me some confidence.
My right side is WEAK (but that was expected). I do not want two pessimistic but it feels about 25% strength. It’s probably a lot better But that’s how it feels…
Since then, it’s been okay here. Nothing major to say from a seizure Point of view. I was nearly 2/3x weeks through half the chemo at time of writing.
I think my hair is thinning (but I think it has been for a long time to be fair).
Losing some weight (or gaining) is irrelevant for the Time. I just want to be as healthy as I can. The steroids make that Difficult…so do the cakes, croissants and sweets! 🫣
At the start of this blog, it was at the start of the start of The Queens Jubilee. I have one weekend before the chemo starts. However where my head is thinning (much like William HRH 🤭). The actual hair on my head is coming to a hurting though – it stings a bit.
The chemo drugs are in my body. I’ve had Other in my previous cycles but feel a bit more harsh – and that because they are! ☠️
I think this will be a tough from day one. Time to crack on…!
😬
Jx
Roll up, roll up…
#49…
This start of chemo started on Tuesday. It would start with a 💉on before some 💊 on Wednesday and Thursday.
Would start start it for send for about five hours at in Guys. Two rounds of chemo proper and with 🤪 .
I have if I’ve to save this but when the chemo starts this time I will lose all my hair this time 👩🦲. Probably after a one month but it’s very difficult to be no assure.
“Chemotherapy drugs are powerful medications that attack rapidly growing cancer cells. Unfortunately, these drugs also attack other rapidly growing cells in your body — including those in your hair roots. Chemotherapy may cause hair loss all over your body — not just on your scalp (For in for Carboplatin Paraplatin”
Here are some snaps before the chemo started on Day one:
I was fine last night but I had some weird dreams. I had a few thoughts thought I was going to be sick but then also thought I was dreaming. I which one was it?
And on now on Weds…
The chemo was actually okay 👍 and I have I was okay during session day l and two. I wouldn’t ever get got cocky never. But three sessions are finished and I thought quite good.
Queue the seizure… 🫣
I was with Ava and as we were going to open the shops. I got a pretty hot and forgot to some water. My arm was shaking.
My face was consorted and my speech and write half of my face drooping. I was trying drink but my face was drooping water all in my face.
I was okay and I could talk with my sister but it was obviously very dreary. I had my medication and after 15 minutes I was okay and to go home.
I know if this accused by the chemo – Who knows! Slow and steady James. But it call call just buy a multiple reasons. Who knows…
Hooray! I had the last of my chemo. Had a terrific night and it was Friday 😎 Have a good weekend everyone x
Chemo here we go again…
#48…
Good evening x
The chemo chair beckons…
At least I have a hair style for now…
Jx
Feeling Good 👍👍👍
#47…
I’ve just home after a very nice in London. I went Jo and one of my good friends Tom. It is very easy to and thinking about the will be coming soon.
I am so to be so lucky see people and people who are so lovely.
On Monday I will my first day of the new chemo, but that’s fine and today that is this…!
I like to see some more people before the chemo starts but I am going to really see lots of people in the coming weeks and months.
I am You in the…
(1615 and got a confused – I think I can do a 2h Before I knew too that’s talking).
Better…
The problem is that I’ve finished saying cents and I’ve totally forgot what I was going to say next. It will come back eventually but right now I was to say what was literally think before 50 seconds before.
I know it was at the meal I went and before the thing to cook after I will quickly send the meal and I am where we want. Here we go:
I have a two or three small on the side small Seizure but in the last three or four days. I got my phone and you can see these which are very very smaller in in the big spell of thinking.
I have always remember You are potentially know for a seizure but I think I am getting too decide when they’re fine. Queue the big Seizure ha ha!
There what are some I saw in yesterday or the day before. This is a very very small more Version:
Obviously this seizures are so small. I think they are interesting all the small people. What a the brain is Unreal.
Jx
Let’s the speech better (before week – not as today)…
#46…
28th Apr…
29th Apr…
1st May…
2nd May…
The more stuff about what’s my Come soon I have a what’s going on with the about my current chemo soon…x
Okay. Not good…
#45…
I have been saying to my oncologist since my operation, and how the she thinks it’s going. When had the op there was a thought that before the first surgeons And there was very issue.
“Thank you for taking my call just now. Hope you are both ok as can be. As promised here is a summary below.
Surgery: During your surgery, as there was fluorescence under blue light the surgeons made a decision to resect a bit more as this was evident of tumour, and not radio necrosis. This therefore meant, your speech and right side would be affected temporarily as they have irritated that area. I am pleased there are no complications following your surgery, and went well. We know there is a residual tumour (that surgeons were unable to resect) as this would have caused permanent deficit.
Diagnosis: With gliomas, they can transform to a higher grade. I’m afraid this has been the case with your tumour sample reviewed. It has now been diagnosed as a grade 4 astrocytoma which fits with the changes, we saw in your recent MRI scans.
Treatment options: We discussed potential treatment options, and Dr A~ will be able to go through this with you both in much more detail.
- Re-irradiation
- Carbo-etoposide
- BASILEA trial
- Sativa
- Avastin
I have been in touch with trials team, speech and language and physiotherapist. I have contacted the team at Guys to arrange an appointment for you to see Dr A~ face to face”
My Tumour has now been diagnosed as a grade 4 astrocytoma and as like all brain tumours, are the result of uncontrolled growth of brain cells.
“Carboplatin is a chemotherapy treatment for many different types of cancer. You can have carboplatin by itself or in combination with other chemotherapy drugs depending on the type of cancer you have.
Carboplatin interferes with the development of the genetic material in a cell, the DNA. This stops it from dividing into 2 new cells and kills it.
You have this drug into your bloodstream. You have the treatment through a drip into your arm or hand. A small a cannula into one of your veins and connects the drip to it. It stays in while you’re having treatment, which may be for a few months.
You usually have chemotherapy as a course of several cycles of treatment. You might have between 4 to 6 cycles. How often you have it depends on your type of cancer”
It is really difficult to use my words to say Watts going on. So I can’t wait to be honest which is really frustrating.
I know what’s going and what means a grade four. But I can get the right words where they need to be. AAAAAAAAA!!!
At the moment, Weirdly the words are harder to get at the to the Tumour which is crazy…xx
~ astrocytomajames ~ 