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Ryan’s Relapse - Biopsy #2

Oral Mass, Lymphoma relapse and biposy #2, bellybuttonpanda.co.uk

Oral Mass

Ryan woke up on Monday 11 September 2017 and told me he had a mouth ulcer. As soon as he showed me I knew it was not an ulcer, I knew his lymphoma is back. We had an appointment with his oncologist at the clinic the following day. The consultant, Dr A, agreed it needed a biopsy. He photographed the mass and emailed our oncology team in Cardiff from the treatment room at Carmarthen hospital. Dr A also advised me that my dentist see the oral mass as it was my dentist that first noticed the original changes the previous year.

My dentist was thankful we had been to see him and to keep him in the loop of developments. He agreed the new mass was looking pretty awful. We were admitted to Cardiff hospital the following day for another biopsy.

Our oncology team were open and honest that it was their belief Ryan had relapsed but obviously we had to wait for the biopsy results to confirm the diagnosis. We were initially advised that we would be discharged on watch and wait and that it would be 7 to 10 days to get results. I knew it was a relapse, the doctors knew too. Even though I knew deep down, the juggling of emotions when Ryan had only been in remission for three and a half months took its toll.

Biopsy #2

Ryan’s biopsy was to be done at the Dental Hospital by the maxillofacial surgeons due to the mass being on his lip and inner cheek. When we arrived at the ward the nurse informed us the doctor had been called away to an emergency, she was very sorry but would we mind waiting.

Ryan being his usual dark-humoured self replied: “Not at all, if we wait long enough I'll be dead and you don't need to bother with a biopsy.” Bless the nurse, she had never met Ryan and didn't know what to do with herself, but we all had a giggle once I had explained.

The biopsy was straightforward enough. Ryan was in an ordinary dentist’s chair, had a local anaesthetic to the area just as you would for a dental appointment. They took a small section of the mass for biopsy. When we got back to the Teenage Cancer Trust (TCT) ward the doctor was already calling pathology to ensure the sample had been delivered but it had not.

The doctor was a little panicked and stressed; how could the sample get lost between the dental hospital and the pathology lab. Ryan again quick off the mark pipes up “Don't worry if the sample has been lost, leave it a couple of days and I'll grow you another one.”

Of course, the sample was received at pathology and it was now a waiting game for the results. Another long arduous road ahead.

Agonising Wait

It was a stressful weekend waiting for the results and on the following Monday afternoon, a week after Ryan had originally noticed the oral mass, the haematology team from Cardiff Hospital rang us with the confirmation of relapse.

We were admitted that day to the TCT ward to begin the process of PET scans and treatment protocols. The PET scan had to be delayed a day as Ryan's blood levels were not satisfactory for him to safely go through the PET scan. He had instead, an IV drip for 24 hours to balance the high urate in his blood.

The following day he was well enough to be scanned and unfortunately the results showed the Ryan has several new lymphoma tumour pockets throughout his body. This came as quite a shock as you can imagine.

We thought we had caught it early and in fact, he was in a worse state than the original diagnosis a year ago. He was now stage 3. The medical team then gave us the gut-wrenching news that Ryan could not go through SMILE chemotherapy again and there was little more they could do. They said Ryan had maybe three months at best.

However, they then came back to us and offered the possibility of another type of treatment but there were no guarantees that we would be approved or if it would work for Ryan's NK/T-cell Lymphoma. There was then a further agonising 24-hour wait to achieve confirmation of funding approval for a new revolutionary immunotherapy treatment called Pembrolizumab.

Our haematology consultant Dr C who is always open and honest with us in front of Ryan confirmed that if we did not receive funding he was talking weeks, not months, which as you can imagine broke me that day. Funding was approved and treatment began Friday 22 September 2017 which will consist of a 30-minute IV drip given as a day patient every 3 weeks in Cardiff hospital over the next two years with weekly monitoring in between at Carmarthen Hospital.

Pembrolizumab

Is an artificially made antibody which attaches itself to the cancer cells and stops them from growing. It is not the same as chemotherapy. Side effects are different, but not as toxic as chemo. Ryan will be monitored closely with regular liver, kidney and thyroid tests to ensure no damage from the treatment.

School

Fortunately, day-patient treatment only and less risk of neutropenia means that Ryan is still able (much to his annoyance) to attend school part-time for English and Maths lessons only. Ryan has been entered for his Maths GCSE exam in November 2017 as we feel he is capable of achieving a C grade if he is well enough on the day.

A four-month grace period of being in remission was lovely, but none of us is rested or recovered enough to be prepared for Lymphoma battle round 2. Yet here we are and fight on we will.

Pembrolizumab, Immunotherapy Alert Card. bellybuttonpanda.co.uk


Comments

  1. How do you remember all these medical/chemical terms? Do you carry a notebook? As ever, your writing style is lucid and interesting but the content gives me a cold feeling in my stomach. You write it dispassionately but its your son! My heart goes out to you.
    " talking weeks not months, which as you can imagine broke me ". I'm with you, it broke me - just reading it made me gasp - you lived it! You are made of granite, you are fantastic.

    ReplyDelete
    Replies
    1. I do make some notes, but as a mum want and need to know what is happening and why, so I learn all I need to know on his treatment. If I am too medical please do ask me to explain. I don't know about granite. My counselor is holding me together, just. Writing is part of the therapy so I am not holding it all in. x

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