My journey with CLL
Diagnosis and treatment
A routine blood test in spring 2013 showed low haemoglobin. We’d better keep an eye on this said my GP. Two more blood tests showed no improvement, so I went for further tests. Probably an ulcer or some internal bleeding, but the endoscopy and colonoscopy said not.
Next thing I knew I was talking to an oncologist. Chronic lymphocytic leukaemia – but it could be worse he said, we’ll start you on the preferred chemotherapy, FCR, you could get 10 years remission and by then there will surely be new and better treatment.
Then there were the cytogenetics, it showed trisomy 12, fortunately no P53 / 17p deletion. So, in so far as possible in the circumstances, I was feeling upbeat enough.
The chemo wasn’t too bad – a 4-week cycle, with 6 cycles planned. Infusion on Monday, oral chemotherapy the next 3 days. I would start feeling low on Wednesday, pretty rotten by Friday and fairly OK again by the following Monday. Then 3 weeks feeling reasonably good.
In the middle of this treatment, I got a severe allergic reaction to Septrin, which I was on for preventative purposes. No Septrin for me ever again.
But the treatment wasn’t working
Cycle 5, the bloods were doing OK, but unfortunately a bone marrow biopsy showed little or no improvement there. I appreciated the fact that my oncologist decided to go for a second opinion – it’s never a failure to say you don’t know. The outcome was to finish the treatment for the time being, no cycle 6. I asked how long this would be likely to last.
Clearly, this was a difficult or impossible question but with a little probing I was told probably more than a year, but definitely not five. So, I thought maybe two or three years.
Then the CLL became active again
Everything was going ok for a while. But 18 months later, August 2015, my haemoglobin was down again. By November, it was getting serious. I had planned a holiday of a lifetime for February 2016. I spoke to my oncologist, and to the haematologist who had given the second opinion and they agreed that I could have blood transfusions to keep me going pending starting treatment again. I asked about treatment options.
By then I knew there were 2 new drugs on the market, Ibrutinib and Idelalisib, with another Venetoclax showing great promise. However only Ibrutinib was licensed in Ireland and the HSE weren’t paying for it. Idelalisib was available on a compassionate access programme from the manufacturers. My oncologist wanted to start me on Idelalisib straight away.
I asked how long I would be on Idelalisib – as long as you can tolerate the side effects, came the answer. I wasn’t happy about that.
I asked my oncologist about going on FCR again and hope the HSE might soon approve Ibrutinib. He said with my cytogenetics I’d be dead within a year! Sobering thought!
I thought the Trisomy 12 was not particularly problematic, but I learned then I had since developed 17p deletion. I didn’t know the cytogenetics could change, but they did.
There was a possibility of a trial of Venetoclax starting in 2016, so I was hopeful. The blood transfusions started December 2015, I went hillwalking in Patagonia in February, had a magnificent time, and then came back to reality. My oncologist wanted to start me then on Idelalisib. The compassionate access programme wouldn’t be open for ever, and I could be left with nothing. The Venetoclax trial wasn’t happening.
Getting on a trial
Rightly or wrongly, I was really worried about the possible side effects of Idelalisib, but there didn’t seem to be an option. I was in the day ward for a transfusion, and a nurse asked would I travel abroad for a trial. I said I’d go anywhere. Leave it with me, she said. After this, my oncologist arranged for a consultation in Leeds, a centre of excellence for CLL. The outcome was that I started on a trial of a combination of Ibrutinib and Obinutuzumab in June 2016. This turned out to be life changing! In July 2016 I had my last transfusion. I had quite a bit of diarrhoea in the first few months, but that went away. I now live a normal life, good energy levels. CLL remains, but very much in the background. Long may it last, fingers crossed!
It was really great to get on the trial.
So, what did I learn?
Things can come at you from nowhere. Leukaemia was so far from my mind that first day I went for tests. In retrospect I had symptoms – some weight loss (but I was a bit heavy and was making a bit of an effort), night sweats (but the summer nights were warm enough and I blamed the duvet).
Around 1995 I had low haemoglobin, I was sent for various tests, but nothing was found, and levels subsequently recovered. My father had died from CLL in 1993 and as it happened I was referred at that time to the phlebotomist who had treated him. I asked if there could be a link. I didn’t get a direct answer, just that CLL is a rare disease. More recently I asked if that could have been a warning sign. Maybe, I was told, but we wouldn’t have done anything about it then anyway. Probably better that I didn’t know, it avoided 18 years of worry.
Then there was the relapse – up to then the cytogenetics showed no particular difficulty. I didn’t know that 17p could develop during or after treatment. But maybe I was better off not knowing, I didn’t have to worry about it.
I decided from the start not to wrap myself up in cotton wool.
I wanted to live as normally as possible. I told my friends and said that I didn’t mind who knew. In any case people find out and they’d be wondering if they should say anything.
Better when everything is in the open. My wife and family were and are a great support for me.
After the relapse, I delayed quite a while, looking for an alternative to Idelalisib. It worked out for me in the end, but in retrospect I must admit it was a risky strategy. My wife and family were worried about this delay. What if I became unwell and couldn’t get on to a trial? And if in the meantime the compassionate access to Idelalisib was withdrawn? And maybe Idelalisib wouldn’t have been so bad? Side effects are a risk, not a foregone conclusion. Fortunately, it all worked out, but looking back that was not a given.
Insurance cover and Treatment abroad
The VHI. They were very good for my first round of treatment, even paid for the Rituximab. However, when I asked for cover for the trial, I hit a brick wall. They will not provide cover on a trial, and I don’t know if any other insurer would. The trial in Leeds was not drug company sponsored. While the Ibrutinib was free, other NHS costs weren’t. And as a foreigner I wasn’t covered by the NHS.
I eventually went to the Financial Regulator.
They mediated on my behalf. I pointed out that this was not a trial of new medicines, rather a trial of a combination of two medicines, both of which were licensed by the medicines board, but not covered by the HSE. In the end, VHI agreed to cover me to the same extent as my outpatient cover allowed. And it turned out the costs from Leeds were not too high.
Before the resolution with VHI, I also went to the HSE for approval for the EU cross border treatment scheme. Here I was refused on 2 accounts: it was a trial and they don’t cover trials; and I was initially referred by a private consultant – they will only deal with public system patients. I pointed out that I paid the same taxes, that to go back through the public system, to which I was entitled, would only put additional pressure on the system unnecessarily.
And that the ‘trial’ was merely combining 2 medications already approved but not covered in Ireland – it was not a jump into the unknown with some previously unheard of weird and supposedly wonderful new drug. All to no avail. I appealed to the ombudsman. They were sympathetic, but could do nothing.
20 months on I’m still on the trial.
Ibrutinib is available in Ireland now, so I could continue treatment at home (the Obinutuzumab infusions were only for the first 6 months). However, I now only have to go to Leeds twice a year, so the cost is not large. And if I did change back to Ireland for treatment, I would have to pay €134 a month under the drug payment scheme, whereas on the trial the Ibrutinib is covered. More importantly, I benefited from the trial and I believe I should stay with it so that they have the benefit of the results. I still see my consultant in Cork from time to time and I get periodic IG infusions in Cork.
Know as much as possible
I think it is best to query everything, find out as much as possible about the CLL, about your options, about the consequences of treatment, so that you are as informed as you can be and are in a position to engage actively with your consultant. CLL is quite a complex disease and it seems to me that there are many variations. Don’t be afraid to ask for a second opinion. In my case my oncologist suggested this himself and I believe consultants generally will accommodate this if you wish. They will discuss options with you, but I think they tend to gauge how much the patient wants to know, so you have to keep asking. Trials can be great, see what’s available and ask to partake if you think it’s worthwhile for you. But not everyone can get on a trial. It must also be the case that not all trials will lead to a positive outcome.
We live in a time when treatments are improving and there are options available. I think back to 1993 when my father died and what was available then – not a lot – we have come along way. But treatments are also getting more expensive and whether we like it or not, the Government and HSE have to make choices as to what treatments they can afford. There will always be a need for pressure from the people who need the treatments.