Kath Lewis

Where has the time gone, I cannot believe that it is just over 5 weeks since I had my first PRRT.  So in this blog I will describe how it has been for me over the last few weeks, starting with what happened on treatment day. Please be aware that this is based on my personal experience, and does not necessarily reflect what other patients have or will experience as a result of this treatment.  Furthermore, the protocols used for my treatment may differ to other hospital/treatment centre. My PRRT treatment is being managed under the care of the The Christie Cancer Hospital in Manchester, U.K., and I will start with a brief description of what PRRT is (courtesy of Ronny Allan), followed by a daily break down of what happened in the first week, and then summarise the rest.  So if you are not interested in the detail just skip it and go on to the next bit;-)

I would also like to take the opportunity here to say a big thank you to Steve, Lucy and Debra and the rest of the Christie team for looking after me so well during my stay and treatment as well as my subsequent follow-ups:-)

So What is PRRT?

This is a non-surgical treatment which is normally administered intravenously.  It’s based on the use of somatostatin receptors to attract a ‘radiopeptide’.  The radiopeptide is a combination of a somatostatin analogue and a radioactive material. Somatostatin analogues (i.e. Lanreotide/Octreotide) are a NET cell targeting drug, so when combined with radioactivity, it binds with the NET cells and delivers a high dose of targeted radiation to the cancer while preserving healthy tissue.  In general, patients tend to receive up to 4 sessions spaced apart by at least 2 months.  If you would like to know more detail on this please follow this link to Ronny Allan’s full article on the subject.  Thank you Ronny for allowing me to use this.

Tuesday 17^thJuly: I hadn’t slept well the night before, I didn’t feel anxious or nervous in any way, but subconsciously something was going on, and a nurse very kindly brought me a cup of tea at 2am which seemed to help. I was still awake by 6am, up showered and dressed in my courtesy green scrubs ready to go.  The ward nurse fitted my first cannula in the back of my left hand before breakfast, then Dr Amarjor Chander who was in charge of my PRRT treatment came to see me, she walked me through the procedure including what to expect afterwards, before I signed the treatment consent form.  Side affects included depressed full blood count, impaired renal function, nausea, vomiting and fatigue,  and following my consent I received an anti-nausea injection to help stop me feeling sick during the treatment.

Then Steve, came to collect me and we walked down to the Nuclear Medicine dept, where I was also met by Lucy and Debra.  Steve and Lucy were in charge of the treatment itself and Debra was my nurse for the day, keeping me company and taking regular bloods.  I wish I had taken a picture of us all at the time as we were all in various shades of green, I’ll get one next time;-)

When we arrived I was weighed and then Steve went to get the PRRT solution ready.  Debra took my blood pressure and fitted a second cannula in my right hand, and a third in my right arm near the elbow. Then it was time to go to the loo, as I would be stuck in a chair for the next 2 hours.  The cannulas in my hands were for the administration of the PRRT and amino acid infusions to project my kidneys and blood from the effects of the radiation treatment, and the cannula in my arm was to take regular blood tests throughout the treatment to check how the radiation was affecting my blood count.

The amino acids I was given (one in each hand) were Lysine Arginine, a protein to protect my kidneys, and Gelofusine which is a plasma substitute, both of these infusions were started approximately 20 minutes before the PRRT started, preceded by my first blood test of the day.  The PRRT treatment itself took 40 mins and was contained within a lead box,  and about 25 minutes after PRRT started a second blood test was taken, followed by a third after the last drop of PRRT solution had been flushed through.

The amino acid infusions would continue for the next couple of hours, but once the PRRT was finished I had my radiation measured from ½ a metre and a metre, then I was taken to the scanner.  The scans took about an hour and I was scanned first with my arms down and then with my arms up.  Luckily they had plenty of blankets as the room was a bit chilly.  Once that was done my bladder was fit to burst, so there was a quick visit to the toilet before going back to the treatment room for lunch and to wait for the last of the amino acid infusions to finish, my cannuals to be removed and a final radiation measure for the day. Altogether it took about 4 hours for the full session, and then I was back in my room, which now had a lead screen by the door to project any visitors against my radiation.

Just after I got back, my consultant Dr Hubner came to see me and to see how  it went, we had a good chat and he also told me that there was a monitor on the wall outside of my room measuring my radation.  The only problem was that we couldn’t figure out what was recording the radiation, although we did have a bit of a giggle trying to figure it out.  I later found out from a member of staff that the monitor was in the light above my bed! I then had a Skype with Ade as he couldn’t visit me, and an early night as I was absolutely shattered.

Wednesday 18^thJuly: I slept a lot better, although I needed the toilet a lot as I had drank a lot to help get the excess radiation out of my system.  I was very weary though, and just moving was an effort, even the shower didn’t perk me up and I needed to take pain relief as my stomach was very sore.  After breakfast I had my monthly jab, and at 11:30 Steve came to collect me for my next set of blood and radiation tests and scans, and to hopefully get the all clear to go home, which thankfully I did.   I was also told that even though I had to keep everybody at a distance, and sleep in the other bedroom that a quick hug was ok.  Ade came to collect me mid afternoon, and after I told him about the monitor in the light above the bed had me walking around the room to see how the measurements changed; and I was daft enough to do it!!  When we got to the car park he got the gieger counter out of the boot and put it against my stomach, it went mad, we got a few funny looks I can tell you. The recommendation on the accompanying card was to evacuate the surrounding area and alert the appropriate authorities  or words to that effect!!

On the way home I had to sit in the back of the car behind the passenger seat, which felt weird more like being in a taxi, when we got home I had to go straight to bed, and crash out for a couple of hours.  When I got up and came downstairs for something to eat I couldn’t face it, my appetite had gone completely, I managed a packet of lentil crisps and went back to bed.

Thursday 19^thJuly: I slept quite well, but woke up with a sore stomach, headache and no energy at all.  So I stayed in bed with my pain-killers and hot water bottle drifting in and out of sleep, and my in-laws Kay & David very kindly did the food shopping, although my interest in food at this stage as minimal as my appetite is not good.  It reminds me of when I was pregnant and all my hormones going haywire putting me off various foods, I had a tinny taste in my mouth and the thought of fish or anything spicy turned my stomach.  Food that day consisted of a cheese sandwich and a packet of crisps, we also had a confused dog on our hands as he doesn’t understand why he cant lie next to me on the bed or the settee.

Friday 20^thJuly:  I woke up pain free and feeling quite good, although once I was up my stomach started to get sore and I needed to be near the loo, which was a concern as I would be travelling in the car up to the Christie for my next set of blood and radiation tests and scans.  I took some pain relief before we left and thankfully everything behaved for the journey, although we were a bit late due to traffic.  Ade dropped me off at the door before parking the car and I did my fast walk down to the nuclear department, well it seemed like a good idea at the time, but by the time I got there I was ready to drop.   It also had a detrimental affect on my veins as it took three tries to get anything out of me, and I nearly passed out on the second attempt, they had to lie me down and I felt very silly for being such a wuss, but that’s me🙄  I was beyond tired when we got home, although I suspect some of this may also be down to post jab lag too.

Saturday 21^st& Sunday 22^ndJuly: We had a quiet weekend, and I got plenty of sleep, then again I retrospect it’s hardly surprising as I was fit for nothing.  I did manage with the help of painkillers and my trusty heat-pack to do some laundry though.   I  noticed to that I was getting quite light headed if I moved around to quickly or stood up to quick.  Ade is taking my radiation readings twice a day, from a metre away as well as directly on my stomach, and they are coming down slowly on a daily basis.  I am also very proud to say that on the Saturday he completed his “Couch to 5K “ challenge, not an easy thing to do as he is not a runner.  On Sunday we dog sat for Willow too, who was no trouble at all as she and Buddy just chased each other around the garden all afternoon, with the occasional 5 minute nap thrown in, I just sat and watched!!

Monday 23^rdJuly:  Back at the Christie today for my final set of radiation measures and scans for this first course of treatment, however my blood tests will continue every two weeks to check that my bone marrow function is recovering as expected.  I was tired again today as I hadn’t slept well the night before, but I did remember to take a long sleeved jumper with me for the scan room, as the air conditioning is very cool in there to make sure the machines do not overheat.  It only took two tries this time to get my bloods, and I was given my release card with the timescales that would release me from full house arrest.

As my levels were coming down as expected this meant that as from today I could mix with anyone over 5 years old so long as I kept them at arms length, by Thursday I would be able to mix with 3-5 year olds, but would still have to wait until the weekend to see my grandson.  Also, even though we could now sit on the same settee again, we decided that it was probably best if I stayed in the other bed for the rest of the week.

Tuesday 24^thJuly:  It is now a week since my treatment, and this morning when I woke up I felt very down and emotional, my stomach was sore and I needed to be near the toilet again.  I did manage to get a bit of housework done but then my batteries went flat very quickly. It had been a long week.

Over the last few weeks I have continued to battle the tiredness, it is quite different to my normal fatigue in that I seem to have bursts of energy, and then my batteries just go completely flat, but as time goes on the energy bursts are lasting longer. My stomach continues to have good days and bad days, but that was happening before the treatment, and as this was my first session it is difficult to say if it has aggravated it or not.  I have also had an irritable bladder, at first I thought I had an infection but the tests came back clear, so I checked with my specialist nurse and she confirmed that this can be a side effect of the treatment, the impaired renal function mentioned earlier.  Overall it lasted about 2 weeks, and it definitely got worse before it got better. I  also had a couple of really bad bloating and cramping episodes, which left me completely drained, and it was a good couple of weeks before I got my taste buds back in proper working order.

Life has slowly got back to normal, and I am feeling like me again.  Once I was out of isolation our son Ryan came for a weekend visit before going on holiday, and then my friend Bridgette came down to see me for a couple of days.  It really should have been my turn to go up to Barrow to see her, but as you can see things got in the way.  We did our usual, talked each other to death, did some shopping for her holidays and Bridgette also got her hair done at my hairdressers.  A long way to travel for a hair cut and colour I know, but worth it. I also did some shopping of my own, although this was not your normal everyday shopping, I ordered a new car, and dare I say the best part of the experience was that my purchase was managed by a woman.

I am having a mini country man, which is the largest of the mini models, and more importantly is big enough to fit Buddy in the boot.  The lovely Joanne Sturton guided me through every part of the design, including any extras, by listening to what I wanted.  There was no hard sell, and we did the process over a couple of days, so no rush either.  Therefore, in October I will be the proud owner of my new car, although I must admit I will be sad to see my little red mini go.

The weekend after Bridgette went home we went to our sons in Nottingham to celebrate our grandson Arthur’s 3^rd birthday with a BBQ.  It is hard to believe now that he was born only 6 weeks after I got my diagnosis. We had a lovely day, he was on top form and loved helping his Moopa to build his marble run; and his dad made him a fab superman cake.  Arthur is very much into his super heroes at the moment.

Then on the Tuesday I was back at the Christie for an echocardiogram, which is one of the follow-up checks done as part of the PRRT treatment, and as I was there anyway, my two weekly blood test was done there.  Glad to say they got it first time this time to;-)

I was also able to book my spa treat that the children had bought me for my birthday earlier in the year, the voucher was for Hoar Cross Hall as they also offer treatments for cancer patients.  Our oldest son Derek volunteered to accompany me and as we had opted for the overnight break, and Ade treated me too paying for me to have a fully body massage.  We did the Fizz Friday break, which meant that there was a nice cold bottle of Prosecco in our room when we arrived to go with our dressing gown and slippers.  We then indulged in a couple of cocktails before dinner, it was good to get my appetite back.

The next day after breakfast we indulged ourselves in all the spa had to offer, checking out the pools, relaxation  and Nordic rooms before having our treatments.  Boy did I enjoy my massage, the hour by went far too quickly, and I felt totally relaxed.  The young lady who did my massage said they probably do about 4 or 5 massages a week for cancer patient, and agreed it was a shame that more spa’s did not offer the option.  We will definitely be going back.

We have also finally managed to get the garage back into a tidy state, mainly so as Ade can put his new car in.  So last Thursday a skip was delivered and over the course of the next four days we managed to get rid of all the rubbish that has built up over the last 12 years. To be fair Ade has done most of the work as I had to keep going for a sit down, but it now looks so much better, it is clean, tidy and we can walk in without falling over stuff, we no longer show the street up either when the garage door is open!!  We also found a box of crystal glasses that have been in there since we moved in and had forgotten all about, and I found the kids signed first editions of my sister’s children’s books, “The Rainbow Scarecrow” series written in the early 1990s.

Ade continued to take my readings for the next few weeks, and the graph is below showing the downward progress of my radiation.  I have also heard this week that I will be getting my second treatment mid- September😀

“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014