Having A Double Expresso

Actually that’s an intentional typo, it should really read. Having A Double Expressor. What you may ask is a double expressor? And that’s why I have used the coffee analogy. Imagine that you have been going to the same café for the last five years and suddenly they change the coffee beans they have been using. Suddenly there is a whole new taste to the coffee, maybe not even one you really like, and because they are now serving a double expresso instead of a single there are twice the amount of coffee grounds left in the bottom of the cup.

This is a little bit like what’s happened to me with my lymphoma. After five years of having follicular lymphoma the disease has transformed as I have said before I now have DLBCL, a more aggressive type of lymphoma. Why this transformation happens is still a mystery to the medical community but it effects around 2% of patients a year. I cannot be sure but I think that the signals of the coming transformation have been there for the last 12 or so months. Those who know a bit about cancer will know there a number of different scans you can have to measure how things are going. The standard CT scan performed will show the site of most lesions and allow them to measure the size of these. The next scan up is a PET scan that allows through the introduction of a radioactive sugar to measure how fast the growth is metabolising sugar. This produces a result called a standardised uptake value (SUV) with a score around 2.5-3 being considered the high end of normal. I have had five PET scans over the last year with the maximum SUV value rising with each scan. The first showing a maximum of 14 and the latest maximum of 24.3 significantly above the standard value of 3.

When they have done a biopsy on my nodes they have also performed a KI67 test. This measures the number of active cancer cells within the biopsy. This test is not considered as relevant in lymphoma as it is say in breast cancer but the scores still speak for themselves. When I relapsed in 2018 the biopsy taken in early 2019 had a KI67 score of 13%. At the next biopsy before my stem cell transplant this had risen to between 30 to 40%. The last biopsy taken as part of the acceptance for the trial showed this score had risen to 80%. So 80% of the cells taken in the biopsy were cancerous. This combined with the faster growth rate are as you would imagine not a good combination.

I talked briefly in the last blog about this transformation not being good news and this is where the coffee grounds come into play. DLBCL aside from being a different disease to the follicular lymphoma can also have other characteristics one of these is the dreaded double hit or even triple hit lymphoma. A genetic transformation with the cells that make the cells much more resistant to treatment. So in this scenario doctors recognise that chemotherapy may provide limited results. Between that and the standard DLBCL is what’s called a double expressor. These are also cells that have genetically transformed but not quite to the extent of the double hit lymphoma. So the resistance they have to chemotherapy is what leaves the residual or coffee grounds in the cup. in other words lymphoma cells that haven’t been dealt to by the chemotherapy. This is called being refractory.

Meeting with my new haematologist on Monday before the second dose of the trial drug, Glofitamab. I asked her to explain more to me about the double expressor gene and the implications of having this. The answer to this was to draw a little graph showing probable survival rates with three lines drawn. It was a simple graph with the double expressor in the middle of the other two. Then she screwed up the piece of paper and said to me that all this goes out the window with the trial. That we are now heading into the partial unknown what has gone before may not apply going forward so I needed to think about this as a new start.

That new start continues this week with the second infusion of Glofitamab. This week was to be 10mg infused as a liquid over four hours. A step up from the 2.5mg last week and a step down from the 30mg that will be the normal dose from next week. It was to be a long day at the hospital but without the overnight stay I had last week, unless something went wrong. Before the dose can be given steroids’ and antihistamines are given with fluid to prepare my body for the drug. By the time they have taken even more blood tests, done another round of ECG tests and fluffed about as they do at the hospital an hour and a half had elapsed.

The infusion got underway just after 10am with all going fairly smoothly until an hour or so later when I decided to get up to make a cup of tea. Nothing too major but I was suffering from feeling rather lightheaded. Thinking this might be something like low blood sugar I also grabbed a couple of chocolate chip cookies and made my way back to the infusion chair. I must have looked a bit “off” as the nurse almost immediately asked if I was OK. Knowing that I have to be honest and tell them everything I explained the lightheaded feeling which was already beginning to subside. She then ran the usual battery of tests, blood pressure, temp, O2 level etc all of these were normal but just in case she also spoke with the onsite Registrar. He arrived and ran a few brain function tests pronounced me as Ok and the infusion continued.

Another three hours later, with no other real side effects other than a bit of a headache, also reported. I was finished with Glofitamab for the week. I now had to sit around for another four hours to ensure no late effects reared their ugly heads. Oh and I forgot to mention more blood tests and another set of ECG tests. Obviously there is a strict criteria that this trial is being performed under so that results can be accurately compared with other test subjects around the world. This means that if a test is to be performed four hours after infusion then that’s when it gets done not three hours and fifty minutes later, but that’s OK I can live with that especially if it leads to a good response. One of the other major benefits of the immunotherapy is that side effects between treatments are much reduced over the administration of chemotherapy. In fact I am lucky to say I have been almost completely side effect free so far. Except for a loss of sleep on the first couple of nights due to the steroids.

It’s back to the hospital again on Wednesday for a quick examination by the Registrar more blood tests and then a few days off till next week. That’s fine for me I live close to the hospital but I do feel sorry for the couple I met yesterday who have a ninety minute drive each way to the hospital and who will need to return again today for what’s only about a 30 minute appointment. He was on a different trial, again using immunotherapy drugs for his bowel cancer. In fact it seems that everyone I meet in the Cancer Trial Centre is having immunotherapy rather than chemotherapy a good indication on the way treatments are changing for all sorts of cancers.

One thing I haven’t mentioned above is that I think Fred/Frieda/Goldilocks is becoming less prominent more on this development to follow. Next week I move onto the full dose of Glofitamab and if all goes well another 33 weeks of the trial. So expect another update to the blog next week.

Published by licencedtoretire

Retired, or at least for now

2 thoughts on “Having A Double Expresso

  1. Hi I like receiving your updates on your long hard road, you make a very interesting read, I am hopeless on putting words together. All those tests wow, it would certainly be draining but hopefully eventually it might end up fine.
    This is just a thought, a friend of mine who’s wife had cancer which was terminal, he found a book called . The One-Minute Cure: this came to him in a dream in an unexpected time. He did some research and followed the book.
    To there amazement all the cancer disappeared just like magic, just a thought as I said. Catch you later
    Cheers Steve

    Liked by 2 people

  2. All them big words and numbers just about made my head hurt, and there isn’t much wrong with me that I’m aware of. All these tests you are becoming a very learned medical man, well cancers and treatments of your type in particular.
    Yes had issues of travelling from home to Greenlane or Auckland hospitals. around 4 hours each way for a 15 – 30 minute visit.

    Liked by 2 people

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