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  • Lewis

Part Twenty-two: The Post I Hoped Would Come

Updated: Sep 24, 2020

I have been relatively quiet over the past few months. My lack of posts has a positive correlation with the return of my overall quality of life. Taking part in the ANIMATE trial of Nivolumab has been very, very beneficial. With pretty minor side effects, I have tolerated the treatment rather well – only needing the odd paracetamol to quash the occasional aches and pains.

I had my first Nivolumab on 27th July at the Beatson. A relatively uneventful affair, where the drip took thirty minutes to dissipate through my Hickman Line. No sickness, which was an absolute godsend.

The following two weeks were great! Out and about exploring the world in my trusty two-seat, convertible. I even managed to mount my 49” Ultrawide monitor on the wall above my desk. Albeit a minor miracle, the wall is still standing, and the monitor is somehow still mounted.

The real bonus was the effect that the treatment had on the 2.1x1.3cm lymph node in my neck. The reduction in size after just 240mg (one dose) of the stuff was a sign of good things to come…

On 10th August we went ahead with the second cycle – albeit a bit more dramatically. I had spiked a temperature right before the start of the infusion, which delayed it a while. Still, we eventually got underway after another coronavirus test – I have lost count of how many I have had now. The next morning I was fine and the following two weeks continued similarly, although with the occasional flushing episode. Maybe the menopause - lol.

I mentioned the flushing at my appointment with the consultant, so blood cultures were the order of the day (These are blood samples that are added to a chemical that allows bacteria to grow, to prove or disprove infection.) These came back positive for a bacteria called Staphylococcus epidermidis – which is a bacteria found on your skin; however, it can pose issues to those who are immunocompromised.

The consultant at Forth Valley was desperate to admit me for IV antibiotics, I refused. I now feel bad as I was on an absolute warpath that day and she received the brunt of it. With my version of the hairdryer treatment ringing in her ears, she found an outpatient regime that was effective against the bacteria in question. The next ten days saw me attend the hospital’s outpatient antibiotic service every day at 9:15 to get IV Daptomycin - an antibiotic. Thankfully, the subsequent blood cultures came back negative. Hickman lines are great when they work, but by god when they don’t…

An example of a blood culture

The cycle beginning 7th September was the business cycle. Upon completion of this cycle, we would undertake both a PET and CT scan to assess the response. There wasn’t much change in the small mass still in my neck throughout the last treatment, so we were hoping it would be scar tissue.

We got the CT results on Monday past (21st Sept) that showed the node/mass was now 1.3 x 0.7 cm – within normal limits. Two agonising days past until the all-important PET scan was reported, which came back today (23rd Sept) and showed a complete remission has been achieved – no evidence of disease!

The next step will be to get an Autologous Stem Cell transplant – which is using my own stem cells to reboot my immune system. These cells are returned to me after high dose chemotherapy to pick up any remaining Hodgkin’s cells. But as usual, I will explain more as we get there.

A massive risk in joining the trial has resulted in a great outcome and one that is very special, with the added caveat that I have played my part in helping those like me in the future.

Tonight the stars are pretty.

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