Name: Tricia

Hospital: The Royal Free

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When my Professor told me that he would be recommending PRRT (Peptide Receptor Radionuclide Therapy) as the next step in my treatment plan, I went straight to the ‘Natter’ support group for advice. These groups have been absolutely invaluable to both myself and my husband, Steve.

Seeking Support

Other members of my support group had already been through PRRT and were able to reassure me that it was well tolerated by the majority of patients, so I felt at ease. Prof Caplin, from The Royal Free NET Centre of Excellence in London, had been treating me for 14 years, so I trusted him completely.

Starting PRRT

Patients usually have 4 cycles of PRRT about 8-10 weeks apart. When the day came to start my first cycle, I arrived very early at the Nuclear Medicine department, around 8am, and I knew it was going to be a long day. I took snacks, drinks, something to read and watch, and a charger for my phone so I could keep my loved ones updated.

Treatment Process

I had a cannula inserted in both arms and more blood tests. I was then taken to an individual room on the ward where I was to have my treatment, so I could be isolated away from other patients because it is a form of radiation.

I was given amino acids intravenously to protect my kidneys before and after the infusion – and anti-sickness meds just in case I felt nauseous. After a short time, the Lutetium infusion is then given in the other cannula. This took about 30 mins. I was then left to have the remaining amino acids administered. At the end of the day, I was scanned to check the uptake and see how receptive the tumours were. I was booked in for regular blood tests in between each cycle, too, just to make sure my body was tolerating the treatment well.

Side Effects and Precautions

In the following 48 hrs I did suffer from a lot of fatigue (but it had been a busy day, too), but I tolerated the treatment well and didn’t suffer with much nausea. There are various precautions patients are advised to follow – for example, I had to sleep separately from my husband for 2 weeks and use a separate bathroom, where possible.

Hair Loss Concerns

After 2 weeks I lost a small handful of hair – and as any ladies reading will understand, I was naturally very worried about this. However, I was reassured that my hair would recover, and it did – just in time for the next cycle!

Support System

We were fortunate enough that my husband, Steve, has a very good employer and they have been marvellous at allowing him to work flexibly so that he can support me. Being able to drive to and from the hospital at any time, anywhere was also very convenient for us.

Family Understanding

Our children are young adults so that made things easier as they understood fully what was happening to me during this time. I think having close family nearby, an employer that understood and was empathetic has really helped to take a lot of everyday life pressures away.

Completing PRRT

I then went on to have 3 more cycles or infusions, as they are called. I started my PRRT in March and finished in November and the fatigue was present after each cycle.

Coping Strategies

I found that listening to my body was absolutely key for me. I also hydrated as much as possible and did gentle exercises like stretches, which were also beneficial for my mental health.

Support from the Natter Group

My Natter group was also extremely supportive – the sharing of information and tips and a true understanding were incredibly helpful to me. Two other members were having PRRT at the same time as me and we could get in touch to enquire how each of us was doing.

Positive Outcomes

It is now over 2 years since having the treatment and my scans are showing that I’m stable and some of my tumours have even disappeared on my latest scans. They call PRRT a ‘treatment for the long haul’ so it’s important to know that this is not an overnight fix. It can keep on working for a long time after you finish, and some say the best results are seen around the 2 to 2-and-a-half-year mark.

Either way, I’m extremely grateful that I was offered PRRT. For me, it was very manageable.