Fred Transforms To Frieda.

Those that know about follicular lymphoma will know that the disease has the ability to transform. Turning itself from an indolent slow growing disease into a faster growing harder to kill version known as DLBCL. So it wasn’t a major surprise, given how things have been progressing with my disease to discover that mine has transformed. We had visited the haematologist to get the results of all my recent tests to ascertain if I qualified to join a trial. I had hoped that these results would allow me to start the BGB-11417 trial I have previously written about. This would at least allow me to get on with my life.

The news that my lymphoma had transformed was delivered in a rather sobering way by the haematologist. He took the time to point out that this wasn’t a good thing and progressed my disease to another level. With which he also confirmed that I have moved from stage 2 to stage 4 with the lymphoma now in my ribs. One of the things I have always struggled to understand is that when you read about stage 2 almost every publication talks about easy treatment. A quick recovery and remission. I felt almost embarrassed discussing my multiple treatments with others. Why had my diseases not responded to treatment, what was wrong with me?

Other than the transformation of my lymphoma all my other tests came back as normal. So the discussion turned to the trial, which I had sort of pinned my hopes on participating in. It was at this point that the haematologist went back to discussions around the other trial he was considering. This trial for Glofitamab would be in New Zealand another phase one trial even though the drug has already undergone some trials in the USA. He told me that at the weekly meeting of haematology doctors they had discussed my case and all agreed that this would be the better trial for me. The feeling was that even though my body is no longer responding to chemotherapy it would respond to immunotherapy.

New Zealand is a very small country and within the team of doctors there is one who had been designated to look after patients in the trial. This means for me that after seeing Doctor Tim for the last five years I now needed to change haematology doctors. A meeting was arranged for me to meet the new haematologist to discuss the trial and sign the paperwork. Also taking part in this meeting and in the previous ones for the other trial was a registrar tasked with doing the donkey work to get things going.

The registrar and I had a bit of a laugh at the meeting as he yet again turned up exactly on time, well before the doctor. As we sat in the room waiting for the doctor to show up I told him that obviously he hadn’t learnt to be a proper doctor yet. He asked me why this was, to which I relied that he was always on time. We both burst out laughing.

The meeting itself for the Glofitamab trial went well with the new haematologist telling me that I was probably the perfect candidate for the trial. I asked what she meant by this. The response was even though my lymphoma is resistant to chemo the tumour burden is relatively low. This means that the risk of suffering from tumour lysis syndrome a potentially life threating side effect is reduced. Also as the lump in my neck is so prominent it would be easy to see results as they happen, once Frieda who was once Fred starts to shrink.

On the down side almost all of the tests I have just completed would in theory have to be repeated. Even the PET scan at a cost of around $3000 as the results of the previous scan belong to the previous trial. They would try and get this approved by the new trial but I should prepare myself for another PET scan. Before I left the hospital all of the blood tests were repeated along with another three ECG tests. I would say what a huge waste of money since I have already done these but the drug company is paying for the results, and they have plenty of money.

If I do have to have another PET scan it will be fascinating to see any changes in my enlarged nodes over such a short period. Since my disease has now transformed to the faster growing DLBCL I can almost feel the lump growing and it’s certainly becoming more prominent.

From a mental point of view I haven’t quite worked out how I feel about the transformation of my disease. Obviously the overall prognosis is worse and the transformed disease is faster growing so things would happen quicker if it all turned south. Before the advent of immunotherapy treatments life expectancy was in the range of one to two years. However I am still positive that the upcoming trial will be the thing that beats the lymphoma into remission. Both myself and my wife are of the opinion that we will deal with issues when they rear their ugly head. There is no point in dwelling on what might go wrong when you can think about what could also go right.

Planning for the trial to start is looking like the middle of May at this point. I guess I just need to get another round of tests out of the way. Before I start the road to remission.

Published by licencedtoretire

Retired, or at least for now

2 thoughts on “Fred Transforms To Frieda.

  1. Glad to see you are able to keep writing and keeping us up todate with what is happening in your life. Writing these updates/journals is a good way to talk about what is happening without having to talk to anyone about what is happening if you get my drift

    Liked by 1 person

Leave a Reply to Ros Rundle Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: