N3il’s Blog

Update 2nd round of treatment 

I am now glowing after treatment, just like the ReadyBrek kid! and you can see with your own eyes my natural glow!

Wednesday 20th, I was in the Nuclear Medicine department in Guys Hospital for a pre-infusion test, just to check I was ok to go ahead with the next round of treatment. Fortunately, everything was ok. I also met up with Mike again my treatment twin! he is the guy who has the same type of tumour as me and so we are going through this together, which is very helpful for both of us. We chatted and went out for lunch after the tests to compare our individual experiences so far, which are pretty similar. He’s also a very friendly guy.

Thursday 21st, I was back early to start my treatment, which started with an infusion of a cocktail of drugs to protect my kidneys and stomach from the negative effects the radiation can have on my body. Followed by the second dose of Lutathera nuclear medicine. Which was also followed by another couple of hours on a drip giving a further cocktail of steroid drugs. Fortunately, again my body didn’t have any negative effects from the drugs, and by 4 pm I was able to come back home for the night. I had a good night’s sleep and have continued to feel well.

Friday 22nd, I was back up at 10 am for a 2D scan, which the doctor said was positive, stable and hadn’t changed in size. These results meant I didn’t need a further full 3D MRI scan. So it was a quick trip on quiet Friday morning trains. 

So now 24 hours later, I’ve still had no notable side effects and I’m still feeling well. Overall good news! I will be on Steroids and a few other drugs for the next 4 days. Last time I did notice my energy levels dropped after finishing these extra drugs, so I might still feel these effects again. I will need to semi-isolate for the next 2 weeks, but actually, the restrictions aren’t as bad as we first thought, it’s more about me keeping a safe 2-metre distance from others, the radiation can’t transmit through the air particles in the room. So all being well I am up for video chats, distance visitors or walks and talks over the woods! 

I was due to work next week, but that’s now not happening, so this will give me time to get over the treatment. I also popped out this afternoon to pick up my car which at the VW garage again, but that’s a full story for another day. 

Thanks again for all your messages, prayers, and support through this journey.

Check out the latest news on my blog site at n3il.co.uk.

Second Round of Treatment

It’s been 10 weeks since my 1st round of treatment in July and this week I heard that my 2nd round of treatment starts this Thursday 21 September 2023. So this is a brief update on my progress since July. 

After isolating for the 2 weeks, I did relax in the second week, but this wasn’t as bad as we imagined, as I wasn’t infectious, and it was mainly to protect others from the radiation from my body. 

Fortunately, I didn’t really feel unwell, but I did notice my energy levels were lower, this did improve over the following weeks. I also didn’t really experience any notable sick effects of the treatment and I have been feeling pretty well and pretty normal since.

We weren’t sure initially how my body would cope with the treatment so we had planned 2 weeks camping in late July, we did have a good time with friends but did cut short the second week due to the constant rain. Because of the bad summer weather, we decided we needed to go somewhere dry and hot, so we booked a last-minute trip to Malta at the end of August and we had a love warm, sunny time away exploring Malta. We’ve also been out canoeing on the nice days and overall the summer has been fun and relaxed.

Work-wise, I started back to work a week after the treatment and have worked all of my non-holiday weeks.

I will update you all again after I’ve had the next round of treatment and thanks again for all your messages, prayers, and support through this journey.

Check out the latest news on my blog site at n3il.co.uk.

A week on after treatment
It’s been just over a week since my nuclear medicine treatment started at Guy’s hospital and here is a brief update on how my week has gone.

Just to clarify one fact for all my friends, my skin didn’t actually go green, but I couldn’t resist the blue with pink-dots look! Also, I’m sorry to say that no superpowers have developed with the radiation infusion. and I thought all Hollywood films were all true!

Now back to the real life!
This blog will now go quiet for a while until I start my next round of treatment or unless there is any further news to share with you all.

After being monitored overnight in the hospital, I had a further 2 scans and I was then released from the hospital. Overnight I really hadn’t felt much different from the previous 24 hrs, but I can feel something is going on within my body but without any pain or discomfort. It’s now been a week since I came home and I’ve fortunately been sleeping and eating well, which I’ve put down to not constantly worrying and mulling over in my head the outcome of the treatment.

I was put on a whole selection of drugs for a couple of days and by Wednesday I was off these and half expecting the side effects to start to kick in. But apart from my stomach feeling a bit unsettled, the rest of my body has been feeling good, well, and pretty normal.

Going forward, I will now need blood tests every 2 weeks to monitor my red blood cell count. If in 6 weeks my red blood cells are back to normal, then I could possibly start the next round of treatment after only 8 weeks which could be as early as Thursday 31 August, otherwise, my treatment will be a 12-week break so around 28 September.

I’ve now had a quiet week at home, keeping myself busy and trying to get out most days with a covid walk sometimes with friends. The isolation restrictions haven’t been as bad as we thought, it’s mainly following some simple rules, like keeping a 2m distance from others, keeping bathrooms and bedrooms separate, and limiting my time with others. 

This blog will now go quiet for a while until I start my next round of treatment or unless there is any further news to share with you all. Thanks again for all your prayers and support.

Keep up to date with the latest on my blog page at n3il.co.uk.

Treatment Day

So what’s gone on in the last 24 hours? I’ve started my treatment today, and so far with no side effects, feeling a bit green and have gained my own superpower! but I now need to work out what they are! 

But back in the real world of events today, I’m NOT green and at the moment feel pretty normal and had no side effects, and a plus point is I’m not feeling sick. 

Now the details, which you might find interesting to you, but feel free to sign off if it gets too boring!

We arrived this morning and was put on a drip straight away for an hour with an infusion of drugs to protect my kidneys, some anti-sickness drugs, and some steroids to help protect my body from the side effects of the radiation. One of the effects of the ‘Lutathera’ drug, is that it can affect different functions in my body and so they were keen to monitor and keep these things under control. 

The radioactive infusion lasted for 30 minutes. Normally they would see any reactions to the drug almost straightaway. I did feel that something was going on but it wasn’t uncomfortable and I couldn’t really describe how I felt. Fortunately, I didn’t have any ill effects from the infusion. I then spend the next 3 hours receiving further drugs to protect my body. I also needed to drink lots of water to help flush away any excess of drugs that my body didn’t need.

At the beginning of the day, I also learned that there would be 2 of us going through the same treatment today. But heard nothing more. 

After coming off the drip I was then due to be taken up to an isolation ward. At this point, I met the other guy and was introduced to my nuclear-radiating twin! called Michael. We were both taken up to a small isolation ward with large lead-lined isolation rooms where we would stay overnight. We would then be monitored via CCTV and only see nurses when then needed to check our vital signs. which needed to be done every couple of hours. Other than this we were left home alone on the ward. 

As radioactive twins we were allowed to be around each other, so we spend the next few hours chatting over our similar stories and getting to know each other. Michael has also had a Paraganglioma tumor removed, like mine, but from a different site on his body, both tumors being rated as Extremely Rare, like 1-2 in a million people. This was the first time that either of us had ever met anyone else with this type of tumor. So we both really appreciated this time, sharing our stories and hearing about some of our shared experiences.

We now have a night of rest before we have further blood tests and a further PET to monitor how things are going. Sue will be coming up to Guy’s to bring me home around 11 am.

Thanks again for all your prayers and support.

Keep up to date with the latest on my blog page at n3il.co.uk.

Pre-treatment tests

Today I’ve been at Guys Hospital for all the normal pre-treatment tests, including taking measurements for my height, weight, blood pressure, and blood sugar levels. The medical team has gone over with me today what I can expect over the coming days and they have told me its likely I’ll feel a bit nauseous and fatigued and will need to rest and take it easy over the coming week.

After over 6 months since my annual review and the latest diagnoses. Tomorrow I will be starting my nuclear treatment under the team at Guy’s. The main nuclear drug called ‘Lutathera’ will be given via an infusion. Which will also include anti-sickness drugs and other drugs to help protect my body from the effects of the radiation. The main effects of the treatment should slowly dissipate over the coming 4-5 days.

The infusion should take about 4 hours, then I will be taken to a lead-lined isolation room where I will be kept overnight. On Friday morning I will have further blood tests and a further PET to monitor how things are going. Sue will be coming up to Guy’s to bring me home around midday.

I will do another update on my progress over the next couple of days. Thanks again for all your prayers and support.

If you would like the latest updates please subscribe to my blog page at n3il.co.uk.