CLL - When the rules changed

I am 74 and three quarters, and was first diagnosed with CLL about eight years ago. I was actually driving down a Belgian motorway and picked up a call from my GP on the car telephone when he advised me of the condition together with the reassuring message “but don’t worry, we can keep you going to the point that you may die of something else”. So it was “watch and wait” for about three years until I had a close call in intensive care with pneumonia, not the ideal complement to CLL (with one you can’t get the oxygen into you, with the other you can’t use what you’ve got).
After that somewhat traumatic diversion, my wife and I sat down with the consultant haematologist and talked about the treatment options. The terminology and the names of the drugs meant nothing at the time, simply hadn’t heard them before, but the discussion took an unexpected turn when my wife asked “would it make any difference if we had private medical insurance?”. The answer – “it would make ALL the difference” proved to be life changing. We did have medical insurance, and bypassed the NHS chemotherapy in favour of what at the time was the latest “wonder drug” – Ibrutinib – which Aviva funded to the tune of something approaching £100,000 per annum.
Within literally a few days my blood counts started to improve, and were back to normal within a month, and stayed that way for three years. I really had no symptoms, side effects or awareness of anything untoward, life continued as normal. At one point my haematologist even said “your blood numbers are better than mine”.
…Until about a year ago when I started feeling tingling in my fingers and toes. Within a week that it turned into pain and within another week I had virtually lost the use of my hands and feet. In a short space of time I degenerated from “normal” to pretty severely disabled. All the signs pointed to neurological damage, but it was only after an intensive series of tests that a nerve biopsy revealed that the CLL had mutated, and become resistant to the wonderdrug and had invaded my peripheral nervous system. This was – and apparently still is – very rare, and despite my case being shared amongst a national forum of haematologist and neurologists, nobody really had an explanation or prognosis.
But as readers of this forum already know, the march of progress into new treatments for blood cancer continues apace. The good news was that there was already another “Superdrug” – Venetoclax – which targets this particular mutated form of CLL. Even better (as my monthly medical insurance costs had trebled by this point) it was on the NHS approved list. Again within a very short space of time the CLL had gone away, not that I really noticed it was back in the first place. Unfortunately, the nerve damage was not so accommodating, and for several weeks my wife helped me with everything from washing and dressing to feeding. Overnight I was unable to carry out my normal domestic duties of cooking, driving, gardening - a situation which is I’m sure is as difficult for the family of the patient as the patient themselves. Bit by bit I learnt to live with the disability, got rid of the walking frame, then the sticks, but still used wheelchair assistance as I continue to travel on business – I managed trips to the Middle East, China, USA and several European countries with help from family at first, but I’m now totally independent. I can do most things that hands and feet are supposed to do, whether by relearning or whether by regrowth of the peripheral nerves (which the neurologist doubts has happened) really matters not at all. I can do them, and that’s the main thing.
I realised I couldn’t drive my six speed manual gearbox sports car, so I changed it for one with a DSG (automatic) gearbox and felt much more comfortable with that after a number of very careful practice runs. A couple of family members asked whether I was really fit to drive, so I paid for the head of the local driving school to take me up a couple of days and effectively put me through a long advanced driving test. I passed that “with distinction” (according to the instructor) and have since covered thousands of miles here and on the continent. But I am very proud of my Blue Badge and it really has made a difference in reducing my exposure to the rough cobbled pavements that we have locally.
The reason I’ve written this is to highlight what I imagine is a topic that is rarely discussed – mutation of CLL – and also to sing the praises of the extraordinary targeted drugs that are now available, really life changing. A month ago I arranged to meet an old colleague in Chicago, same age, same disease, and compare notes. He had been through the conventional chemotherapy and infusion route, but had to give up work four years ago and cannot venture far from home without risk of infection, which could be fatal.
I’m now back in “watch and wait” mode but to all intents and purposes in good shape. Fitness and energy levels are not what they used to be, of course, but I’m not kidding myself that at the age of 75 I need to prove anything in that respect. I’m an engineering consultant, love what I do, and health willing would love to continue in the same vein until it really is time to take my leave of the planet! That time could have been six years ago, thanks to the extraordinary developments in blood cancer treatments I’m still here. I very much hope that I will have the opportunity of contributing in some small way to the excellent cause that Bloodwise represents.


Thank you for sharing your story, it gives a different perspective regarding treatment options. It would be a fantastic thing if we could all get access to some of the treatments you have received but as most people in the uk receive their treatment via the nhs we are at the mercy of NICE approval and this tends to slow things down quite a lot. Also medical insurance is not a option for people who are living on very low incomes, so we have to go with what is offered. However hearing your positive experiences with these novel drugs is a motivator for all of us to challenge our hemotlogiist on what we are being offered as exceptions can sometimes be made even under the current system. So once again thank you for sharing your story and I wish you continuing good health given the circumstances and I’m sure your contribution will make interesting reading for other forum members.
Best wishes
Alfie female 56 ppcl myeloma.

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Thank you so much for taking the time to share your story, from what you’ve shared you and your CLL have been on quite a journey together! How have you found returning to watch & wait after periods of treatments, was it worrying for you? Pleased to hear you’re well, long may it continue!


@innoventor. Hi Mike, and welcome to the forum. I am bowled over by your post. The details of your illness and treatment are amazing enough, but how you have dealt with the problems your treatment caused shows great strength of character.
Many people who have had a diagnosis of blood cancer find difficulty getting travel insurance, and I wonder if you have any tips for our forum users?
Best wishes, Louise


Hi, welcome to our community forum and thanks so much for taking the time to write what has happened to you since your CLL diagnosis 8 yrs ago. I am a 69yr old female who was diagnosed with CLL 16 yrs ago. I have been a very lucky girl and have been on watch and wait ever since. Co-incidentally I was diagnosed in a December and sent a Christmas card to a friend, of a similar age, in Los Angeles and the card must have crossed in the post with one from her telling me she had also been diagnosed with CLL, so we have kept in closer email contact ever since. She received treatment quite early on and has been in remission ever since. It’s a small world. At that time I felt we were the only 2 people in the world with CLL. I was in complete shock when I was diagnosed and I believe my emotions have been on alert ever since. I still get anxious before and during medical appointments and tests. I have found this community forum really supportive and informative. I find forum members really understand my fears, thoughts and feelings as no others do. That feeling of not being the only one I find is priceless. I have re-assessed my life and what I want out of it, I am far less materialistic and have realised the best things in life are free like nature, music, family and friends.


Dear Alfie

Thanks for your interesting reply, and you make a very good point about the availability of drugs on the NHS. Although it is true that my original “Superdrug” Ibrutinib was funded from insurance, I believe that this has now been approved by NICE - and certainly my current supdrug, Venetoclax, has been on the approved list for some time. They are both horribly expensive, but there are options that are open even in respect of the non approved drugs. In my case, the fact that I had been “very ill” in intensive care qualified me for first-line use of a drug that is normally only prescribed after two or three relapses from conventional treatment. But also there are clinical trials which you can take part in, although I don’t know what happens when the trials are completed, whether you are allowed to continue. When the first trials were done in the United States with Ibrutinib (where half of the participants take the drug and the other half take conventional therapy) the positive results of the targeted drug was so dramatic that the trial was halted on ethical grounds – in other words it was so abundantly clear that one approach worked and one didn’t and it was therefore considered wrong to continue. Although I’m lucky in having as my consultant the head of molecular biology for one of our major teaching hospitals, to some extent I think you do make your own luck. When I discovered that this eminent person just happened to be on duty at the weekly clinic where new patients like me are told the rules, I made direct contact by email and simply asked if she would consider adding me to her patient list. Not only has her knowledge and advice been world-class, she has a network of contacts in the medical field who enjoy similar status in their own subjects, and it’s enabled me to get attention of the highest order whenever something else has gone wrong! The last two years I’ve been 100% NHS and have nothing but praise for the people and system. I really hope it does for you what it has done for me.

Kind regards - Mike