Pembrolizumab

Hello Timbo699, welcome, I had a quick peak at your profile, it looks like your having one year of Pembro as an adjuvant treatment. I’ve had a lot of Pembro, and restart again on Sunday. I could talk until the cows come home so I thought I’d ask first if there’s anything in particular you’d like to know, and I’m happy to help. 

Hi Timbo699, I will start chronologically, I have a blood test before my consultant appointment, the bloods are taken at home at the moment and the test monitor if anything might be changing for me. I used to have oncology followed by 2 days later my treatment but as that was full I have a new slot 4 days later. When you sign up for treatment you are given a list of the possible side effects and a 24 hour card where you can report them. If you don’t card the card pre treatment you get them at that first treatment. 

My treatment tomorrow is at 9:30am and it’s programmed in for an hour. I will get buzzed into to the centre and seated, husband will have to wait in the car or go for a walk as he can’t be with me. I will have to take a face mask with me as they recommend wearing one from car to car. I will have taken a water bottle with me to ensure I’m hydrated as that helps the cannula go in. They will put the cannula in and attach a saline solution to keep the line open and they put a wrist band on. After about 10 mins they attach the Pembrolizumab and this runs for 30 mins. Someone will go through the procedure of contacting them about side effects and ensure you have the 24/7 card at some point, and they will check if any meds have been prescribed for you, possible anti diarrhoea tablets as they recognise that as a common side effect, I’ve only ever had that once very mild. I can get tired for a few days after treatment and once I had an all over body rash two weeks after my first ever treatment, when I rang the number on the card they advised me to take antihistamine tablets, the ones for hay fever, I had some so didn’t need to get a prescription. That side effect delayed the next treatment by a week as I was on 3 weekly treatment then, I’m on 6 weekly like you, nk most will be during coronavirus. When Pembro has gone through they ensure you get every drop by attaching another saline solution to run it through for 10 mins. Occasionally if they are running late they will use a syringe to push the water through to save time. 

I read the other day someone with a different cancer went for his usual 20 mile run the day after his Pembro, I couldn’t do that on a good day!. Life carries on for me as normal but as I feel a little bit at half pace for 4 days I pace myself. This is all remembered from pre virus days and as I’m shielding as advised, I have only in the last week been going out for a quiet walk, but I also have an exercise bike at home to keep some activity. I’m getting online orders for food and I freeze home made stuff for easy meals in case I’m tired. I do limit how much sweet stuff I have as Pembro can alter your blood sugar levels, but that’s just me as I was diagnosed as a double whammy of type two diabetes nearly 5 years ago and I do not want that to return either, so I control my diet for sweet things and carbohydrates. 

I’m already booked in for the next 6 week one for oncologist by phone and treatment, I used to have to get my next treatment slot when I walked out but I have been able to check the dates on line now at my hospital for over a year. 

So, few side effects for me, sometimes I have problem with the person putting the cannula in and after two attempts someone else has to try. It’s just something you get used to. If you have any questions just ask.

Hi KT,

Many thanks for that. Exactly what I was after! My ‘bloods’ are being taken at my GP surgery a few days beforehand and I already have the Keytruda emergency card in my wallet. I’ll let you know how I get on.

BW, Tim

Hi again KT 

Forgot to wish you all my best wishes for next Sunday

T  

Thank you and you, I usually take something with me to do, I like code words and each one takes about 20 mins but depending on where the cannula goes writing is not always easy. I may just take earphones with me and play music on my phone or Pokemon I have some wipes for my phone. Good to hear you’ve got the card and info, I hope things are good for you.

Hi Timbo699, I just thought I’d pop in to say restarting Pembro has been uneventful. I arrived 15 mins early. They took my temperature on buzzing me in. I reported in at reception to be greeted like an old fri Nd by one of the nurses. (I’ve been going to the oncology ward for nearly 5 years now). I was told where there as a waiting area, where There was a water machine there but I’d brought my own drink with me. Shown into the clinic more or less on time, 4 chairs and 2 beds in there, I had a bed but they propped it up for me. 2 cannula tries unfortunately but never mind and a chat with one of the nurses who has a name similar to one of my daughters. I could reach a pokemon stop from my bed so yes for the hour and a half I was there that’s what I did.

The car park had been free the last time I was there but I suppose more people are back at work now so the barrier was down and we had to go through the rigmarole of getting the concession price. I had hand gel and tissues in the car incase the car park wasn’t free, due to buttons to press etc. Today I went to a different hospital as my husband was having an ultrasound, they had big signs up saying normal charges apply so I assume carpark had been free for a while there as well but all returning to normal. 

I felt a little bit wobbly walking back to the car park after my treatment so I was glad hubby had come with me and could drive back. He went for a bit of a walk and I texted him when the last saline was in so he knew I’d be good to go in 10 minutes. Today the day after treatment I’d usually just have a rest but due to hubby’s ultrasound I drove him to the hospital and waited in the car park. Luckily 2 Pokemon gyms reachable. I didn’t go for a walk too many people around. I find I get a bit nervous at the moment at the thought of people coming to close. I do appreciate that I’m coming across a bit crazy but well you’re getting the real me. 

On route to the hospital going from a 50 to a 30 there was a mobile speed camera van, I will find out I suppose if I didn’t slow down in time, I will be gutted if after 43 years I get my first speeding ticket! Driving seems to be a bit weird at the moment having been shielding for so long, this car is an automatic my first ever one and it doesn’t slow down as quickly as a manual when you take your foot of the accelerator. I’m feeling a bit like a novice driver again!

Let me know how your treatment goes. 

Hi KT,

So good of you to write. I really appreciate the newsy style! All fine with me, I did a 10k walk yesterday and feel fine. Bored out of my tiny mind though, I’m single (divorced) with 2 nutty but affectionate cats for company. 
Spk soon

T

Hi T, you mentioned you were bored, I did a mindfulness course recently and they encouraged doing something new everyday to relieve the boredom, anything from changing what you usually have for breakfast to starting a new creative hobby or learning a new language. I challenge you ! 

I started small with the breakfast thing on day one, then researched YouTube for making a face mask, and found some old but craft type paint in the garage and although not very creative sugar soaped then painted two boxes and decluttered to make better use of them. I am a rubbish example as I then bought a face mask and put the half made one away in my sewing box. 

I am a lazy gardener but Sailor2/J inspired me to plant a sunflower, I’d nearly given up on it but a few days ago I excitedly noticed it had sprouted. I forgot to thank you J so I’m righting that now.

So I definitely think that you should set a new challenge/experience for yourself T, to relieve the boredom, and hopefully bring a little joy. 

Take care

I’ve written a novel, and have an agent who Is trying to find me a publisher. No takers so far. It’s a spy thriller,  Trying to write the second one, but my concentration isn’t there at the moment 

T 

Hi KTatHome,

Its so great to see these sunflowers grow almost whilst you watch...  I have eight of the giant ones growing, though one looks to have been eaten by something at its base so it might not last.

I have also bought red sunflowers and dwarf yellow ones.  The  first batch of them were lunch for one of my feathered friends, but I now have thirty or more sprouting. I soaked the seeds overnight to speed it all up a little, and they start to appear at five days.

I have also made netting frame which is protecting them whilst they are small & vunerable. They're sheilding too!

So glad you planted yours, it will be fun to compare notes as the summer progresses.  It doesn't seem that we can post photos anymore?

Later

J