Thoughts on what is and what isn’t CLL related.

After 12 years of watch and wait I started treatment in 2017.
I had Ibrutinib first and transferred to Acalabrutinib because of side effects of joint pain and cramps. This continued on acalabrutinib and was accompanied by diarrhoea, so that was suspended. Eventually I realised the diarrhoea continued even after the drug was discontinued. Further investigation identified pancreatic insufficiency and I started on Creon. My haematologist referred me to the Pancreatic Unit to find out the cause. Finally today I kind of have an answer – idiopathic! In other words no cause determined at the moment. Just told to increase the Creon dosage as I wasn’t taking enough.

No problem. Follow up is a further blood test for genetic screening for cystic fibrosis gene. The consultant says he would be surprised if I have it. In the course of all the blood tests I have been identified as pre-diabetic and referred to a diabetes nurse. Still no reason as my diet hasn’t significantly changed except to cut out carbohydrates and sugars. The interesting fact is that back in 2019 I had a CT scan to look at my gut because of an incisional hernia – now fixed but a result of many surgeries. No one picked up I had virtually no pancreatic tissue- my pancreas has virtually disappeared ! Ok – nothing can be done as it won’t regenerate. All they can do is monitor and replace lacking enzymes and hopefully stop the need for insulin. Lovely consultant, very thorough and reassuring- it isn’t pancreatic cancer! A group guru had already indicated that- as if it had been, I would be dead by now- very reassuring!

My worry is what is and what is not CLL related. I had a gangrenous gall bladder that was removed a few years ago. That was probably due to my body not being able to fight the infection due to my poor immune system. My gall bladder was connected to my pancreas- is that why my pancreas is disappearing? And if so the acalabrutinib probably didn’t cause the diarrhoea! So I stopped for the wrong reason. All a bit of a mystery and a jigsaw with pieces missing?

Even that has done me a favour. Am treatment free since last August and my bloods are not increasing significantly. The good thing is after 4 Covid vaccinations I developed trace antibodies. Is that because after 6 months the effects of acalabrutinib had worn off? Am hopeful that my 5th vaccination will result in even more antibodies. This, coupled with the advent of antivirals like Paxlovid on early diagnosis of Covid, and the remote possibility of Evusheld in the not too distant future, government funding permitting, I am feeling a tiny bit more optimistic of resuming some sort of social life. Especially as the weather improving will allow more outside meetings and meals al fresco.

After that tour of my medical history I will now get to the point. Whilst the pancreatic issue does not seem related to CLL it may be indirectly. Who knows! Our bodies are a complex mesh of
interconnections and as my doctor keeps saying if one bit doesn’t work then there is a see-saw of reactions. It’s a miracle any of us survive the complicated connection that keeps us ticking. I still have creaky knees and dodgy guts but the creaking gate is still swinging. As a friend succinctly put it, I am still alive! That is indeed something to be grateful for- every day is a bonus.