Week One + on Ibrutinib

Well it's just over, actually. The side effects have been, more or less, listed on the leaflet. I've had joint pain in my left foot (A good title for this blog) and I might get a movie out of it! I've had a little diarrhoea. My heart has had some sessions of palpitation (atrial fibrillation) - this would be unusual for me as mine generally plods along at around 50BPM. The fatigue has been very variable - sometimes associated with breathless ness and activity, other times it's just there like a cold wet duvet! I feel the effects of anaemia. As I have  thrombocytopenia I have to be careful with cutting  or bruising myself or straining on the loo. Additionally neutropenia renders me vulnerable to infections particularly colds and gastric ones. So I've to take care of myself well. Kym does a fantastic job. It's a bit tough as she's pretty much sacrificed her career to care for her beloved H.

After all that negative stuff I'm pleased to record that the drugs seem to be working pretty well. At the start of this episode my CLL had relapsed. My bone marrow was 70% infiltrated with tumour cells. This helps to explain why all the other blood numbers were jumping up or tumbling down in just the opposite manner expected in a healthy body. There were enlarged lymph nodes all over my torso and neck and I was struggling to keep awake and get around.

So Alleluia, the lumps and bumps are shrinking down, the fatigue seems to be easing, fluctuational (new word) and my excretory business indicates that a lot of stuff is exiting the old carcass. The brain is only slowly responding to the additional oxygen been carried in the blood. My spelling hasn't yet reached back to it's heights of schooldays - this draft is littered by red underlinings.

The cold weather has slowed me down somewhat and since the snow fell on Sunday I've only walked to the Post Office to send the first batch of Christmas cards. I've pretty much stopped getting out and mixing during this initial time. I don't want the risks. Kym is being very protective and is the voice of reason in my slightly chaotic brain.

I've linked a few little movies about Ibrutinib just in case anyone wants to get a bit medical and know what the NHS is spending a LOT of money on. God bless the NHS and we are so fortunate.

Ibrutinib promotion movie

How Ibrutinib works

Ibrutinib: adverse effects

I've recorded a little Christmas song - not a traditional one. I may have had a stab at it a few years back. This is a slightly more "sophisticated" version

Also I've linked in my digitising of some old home movies from 1959. Expect more folks - when the brain gets back to normal in the new year - the projector will be out for some playback sessions. Perhaps I should party - bring a bottle of single malt and a tube of Pringles!

Any way it's about time to log off - I'm tired and hungry and my brain hurts!!

God bless everyone,

Roger

CLL - the next Chapter - Ibrutinib - sounds like a Germanic Gladiator from the age of Spartacus

Friday 1st December 2017 the fight against the relapse commenced. All warriors from the NHS and us two little souls put on the breastplate of treatment. Not chemo-immuno therapy as in 2015 but a targeted therapy dealing with the mechanism that allows damaged B-lymphocytes* to proliferate and congest the blood and bone marrow. The aforementioned damage is caused by the disease and manifests itself by allowing damaged cells to continue to develop and then overwhelm the fit ones. In healthy bodies there is a mechanism to kill off the damaged B-cells - which are then flushed out of the blood, bone marrow and organs.

*A lymphocyte is a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria, viruses, and toxins.

I've been feeling unwell for 5 or 6 months and gradually having less energy, greater breathlessness, more aches and pains - like having the flu without all the snotty stuff. The blood results have shown that the amount of white cells and particularly lymphocytes in my blood have been fairly rapidly increasing, whilst the red cells and platelets have been plunging.

The drug is known as Ibrutinib : Macmillan explain it pretty thoroughly.

Beware - images of drug taking!

By the end of that first day - which was in reality about 3:30 in the afternoon - I'd helped at Bushmead Christchurch Thirst cafe's Advent Singalongadingdong, Id set up, sung and played and led the community singing - with help!

Singalongadingdong-Thirst Cafe Bushmead

I'd  driven there and back eaten sausage roll and cake and achieved most daily things along with yet more blood tests - and not really experienced any adverse side-effects apart from some light-headedness and a little dizzy spell plus a headache. But as mentioned I was done in by half three. I was asleep by the start of Gogglebox (actually watched Saturday morning)

Day two - I awoke at four thirty - feeling normal for me with aches and a thick head - like a hangover - yet no booze consumed. Pills taken and no further side effects emerged! I felt fine - for me. So we decided to take on the day as planned.

We had been invited to a memorial event for the late Chair of Headway Luton trustees who passed away in August; earlier this year. She was indeed the first of three bereavements within a few days; including my old mate Tony Little and of course my dear old Mom. It was a pretty emotional affair - firstly for the family and then secondly for me - as it brought forward memories of Mom's passing and funeral. By coincidence both Mom and Bobby were laid to rest in Countryside settings; Bobby having a humanist ceremony. We also met some of the Headway Luton trustees paying their respects.

My Statue from the Jansenn Blood Cancer Awareness Art Installation

It's a bit ironic as the statues were funded by Jansenn Pharmaceuticals who manufacture Ibrutinib. I've just noticed that there's a bit of damage to it - I think it must be magpies.

Day three- we had a duvet morning. I think the stresses , physical and emotional, have taken a lot out of us. The last few weeks have been pretty highly-strung. We toddled off on a walk to get a bit of oxygen and other benefits and returned unscathed; with just a couple of stops for breath.

Dec 3rd at Wardown Park

We now have weekly clinics; which unfortunately fall on a Wednesday morning, so I will have to miss the Foodbank for a time. I will try to keep up the rest of my routine and not fall into invalid status as happened during the chemo.

I've recently become a Trustee of the CLLSA (click for more information. It is fascinating for me to be in a better position to support others with this disease. The initial meeting for me was in Birmingham; fortunately close the New Street Station. I was very pleased to meet the other Trustees and join in meaningful discussions on the way forward to develop support for both patient and carer.

I'm trying to keep this an almost daily blog. My website is out of date and I've forgotten most of my coding skills!

Best wishes one and all,

R