I'm sure we have all had a 'Spinning Head' at some time or other, especially since being diagnosed with CLL.
Many of us soon realise that CLL is soon joined by a host of other Diagnosis and Prognosis, which can overwhelm us at times,, thus the perpetual 'Headspin'.
After five years of W&W, I was told in July that it would soon be time for treatment. A few days after I was told this, I woke up with 'Bell's Palsy', and put on Steroids for ten days, which didn't work. The left side of my face has collapsed, and I have a permanent open eye, and lips almost vertical. I am dribbling for Britain, and have gone from 'Brad Pitt' (I jest) to 'Quasi Modo'😀
After being told originally that it was Bells, then, told it was as a result of the tumour, it is now definitely Bells , (They think) and likely permanent. I am going in for an eye operation next week, where they will insert a small 'Gold' weight into my eyelid, which supposedly will help me to blink, thereby allowing me to ditch the 'Eye Parch' and the eye ointments and gels, thankfully.
An MRI was also obtained, and they found a tumour in my neck, which had materialised from a scan in 2019, to a small growing mass now.
The prognosis was bad, but they could not say how bad, until it was identified by Biopsy. Two Biopsys at my local hospital failed. Due to my age, medical history, and previous 'Radium' treatment, for a previous fifty years benign tumour, I was told that an operation was out of the question
I asked for, and got a second opinion, and was given a third biopsy at a city hospital, where they specialised in challenging biopsies. A partial result indicated some cancerous cells, but they could not identify what exactly what type of cancer it was.
The thinking of the Multi Discipline Team (MDT) was that the tumour may be a residue from the earlier operation on my Parotid gland, and which was a 'Pleomorphic Adenoma' which is usually a Benign. However, if they come back after a long time, a small percentage of them can be Cancerous, thus the concern.
From July till now I had been told that the CLL treatment would be on hold until I had resolved the tumour problem. Two weeks ago, I was told by my MDT that I would be monitored for three months, with another MRI scan then to see the state of growth of this tumour. I was also told that my Haematologist could start treatment, in the interim.
This morning I saw may Haematologist, who had my very recent scan and bloods result, in front of her. In an earlier scan she found that my Kidneys were malfunctioning, and took me of a recent new Blood Pressure Pill called 'Candesartan'.
She said today, that my kidneys were now functioning normally and that Candesartan was probably the cause. I am seeing my GP next week regarding reverting back to my original BP pill Ramipril.
She has told me I will need a Bone Marrow biopsy, and depending on the results of that, she will determine my CLL treatments. She seems to be leaning towards, 'Venetoclax Pill's and an 'Obinutuzumab' drip.
She is keen to have this done in January, in case the tumour issue flares up, as it will be better if the CLL treatment is completed by them.
If anyone has any views or advice regarding this rather lengthy, and complex little 'Post' I would be most grateful.
All the very best to you all, and an early very 'Merry Xmas' and 'Hogmany'. Ron
A hellish 2 months. Very confused about MRD measurements.
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
Newly Diagnosed with SLL and unsure of what lies ahead.
