Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 13) - unlucky for some?

Chillax
©Harveywetdog

I probably should rename this blog; from my last clinic with GRH I have been told that my CLL symptoms are greatly reduced but my haemoglobin level remains low and I am now diagnosed with Pure Red Cell Aplasia (PRCA). Read on to find out what this means and how my treatment will change as a consequence.

Treatment

Of course the PRCA diagnosis didn't come as a great surprise. The doctors had been suggesting it for months but wanted me to run my course with Venetoclax before changing direction. Unfortunately this meant a third bone marrow biopsy to confirm the diagnosis but luckily this wasn't quite as painful as the second so I came through relatively unscathed.

The good news is that CLL disease levels are very low <1%,  but as I indicated the not such good news is that there are still no signs of red cell production so treatment has to move from treating CLL to treating pure red cell aplasia (PRCA), while continuing with blood transfusions.

Give us this day our daily drugs?
©Harveywetdog

My consultant moved quickly on the day and initially I will be on steroids for a month (starting 2nd June) then hopefully switch to Cyclosporine if it is okayed by the specialists at Kings. All drugs come with a risk and this is no different. We will see how I'm reacting when I have my blood test on the 8th June ready for another transfusion on the 9th June.

So it is good that the CLL appears under control,  it's just a pain that I’m on another course of treatment now and the consultants appear less informed about PRCA, what causes it and how to treat it. While the steroids will give my bone marrow a serious shake up, there is no certainty that when I stop taking them my HB level will collapse again.

This means my treatment has currently broken down into five phases:

1 Obinutuzumab and Venetoclax (CLL)

2 Venetoclax only (CLL)

3 Review results of 3rd bone marrow biopsy 

4 Steroids (PRCA)

5 Cyclosporine (PRCA)

I have been having blood transfusions since before phase 1. From half way through phase 2 I have been taking iron chelation tablets as a result of being transfusion dependent. 

As we know there are no cures with cancer and I don't know if we will need to come back to the <1% CLL figure, but the doctor did sound pretty positive about that compared to the ~30% figure at the 2nd bone marrow biopsy.

The steroids do feel to be having an effect; even the pharmacist said the 80mg/day was a big dose and luckily I've not had an adverse reaction to them. Swallowing 16 5mg tiddlers is a bit of a trial, you just have to make sure you take the stomach liner pill first.

Videoing

I had arranged to video at Wellington Festival of Dressage this weekend but as you will have seen via other posts they have now decided not to allow this. I fully recognise a venue's right to say who can video at their event, what I object to is being messed about and then people changing their minds at the last minute; so unprofessional and incompetent. And I really think organising bodies need to decide if "Exclusively Live" really means "Live and Exclusive" or not.

Once they close ranks they close ranks!
Unprofessional and incompetent?
©Harveywetdog

What I do have is the chance to video some sections of the Women's Cycling Tour of Britian as it passes through the Forest of Dean and hopefully a day or two out at the Cotswold Cup will keep me out of trouble for the rest of June.

Social License to Operate

It has been interesting to see that since I started thinking about the worrying level of attrition amongst young sports horses based on my simple analysis it's become obvious that the equestrian community is having to be seen to be taking the subject seriously. While the BEF have still failed to respond to my e-mail on the subject it has been good to see the FEI taking up the baton and establishing their own commission on the subject.

FEI SLTO Commission 

Of course it is a shame that the Commission does not appear to include horse racing and gives the impression of being somewhat introspective and not looking to learn from other bodies that have to manage societal risk and make a case for them being "broadly acceptable".

I also noticed that YouGov also ran a survey on the topic. No doubt when the results are announced we will find out who commissioned the survey. Will it be the League against cruel sports or will it be an equestrian body?

Looking forward to seeing the results?

 

Camera

I'm still no nearer being able to purchase my new camera due to Sony's global supply chain issues. 

Looking Ahead

 

Once I've completed the steroid phase and hopefully transitioned onto Cyclosporine I'll provide an update on progress with my treatment. I'm fingers crossed that I will be able to run down my dependence on blood transfusions; that reminds me, I really should say a massive thank you to all you blood donors out there - you really are life savers. THANK YOU

Author - David Robinson  

David spent approaching 50 years in Her Majesty's Electricity Supply Industry before retiring

He was part of the highly successful design team on the Sizewell B Nuclear Power Station Project before spending 25 years producing safety cases to keep our aging AGR fleet generating for the good of the nation

He is responsible for the Harveywetdog YouTube Channel which he maintains as an outlet for his creative talents

David is currently recovering from blood cancer but refuses to be a victim

All views are his own but might be influenced by the drugs he's currently having to take

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Reflection

Where are they now - an example of a promising young horse who competed 40 times up to seven years old and then disappeared from the British Dressage competition records?