After a routine health check my partner has been confirmed with CLL...
He has no obvious symptoms other than fatigue at the moment with a Lymphocyte count fluctuating between 8 to 11. He is 54 and has been told watch and wait with 3 monthly check ups with the a haematologist at our local hospital.
I just wondered if you could give any important advice at this stage?
I’m thinking we would be better off being referred to specialist centre and we live in Buckinghamshire so London would be good for us. Do you think this is advisable?
I’ve read about CAR T as a treatment option?
Any advice would be much appreciated...
Best wishes
PY
Written by
CILE
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I too was diagnosed at 54, largely asymptomatic with a similar ALC (absolute lymphocyte count). I started treatment last Thursday after nearly 7 years on W&W. The important thing to remember about CLL is it’s so heterogenous and we can all have very different paths and hurdles on the way.
You must all be shell shocked and fearful because CLL is an uncertain condition and very different to other cancers due to its chronic nature.
You can take a deep breath and know that there’s no need for panic or angst because this may be a very long haul journey and you need to be sure about who you want to take along with you in terms of disclosure. The one thing I’m grateful for is not disclosing my CLL early or widely except for those who really needed to know. This will become more significant to you as time passes and your husband stays well and can live his life without being in ‘patient mode’.
In honesty CAR T therapy isn’t something you need to be considering at this stage and by the time he needs treatment, there will be so many alternative treatments on the horizon. I’m on the Ibrutinib/Venetoclax arm of the Flair trial and am immensely thankful for that.
I saw a local haematologist for most of my W&W period and consulted a specialist when treatment time was looming. Much depends on the confidence you have in the local haematologist and haematology unit and frankly, I wouldn’t write it off at this early stage. It’s always reassuring to be under the care of a CLL specialist if it’s geographically possible but there’s some very skilled haematologists in local NHS hospitals, especially the ones involved in Clinical Trials like Flair. The important thing is to make sure you have access to help if you need it so ask if there’s a Specialist Nurse attached to the Unit to consult if necessary. That’s something I didn’t have. There’s loads of excellent care in the capital so you’re fortunate to be based there. However, it’s not routine to be given genetic testing early on the NHS so don’t be concerned if your find he’s not being offered FISH testing and mutational testing you’ll hear about on here from our international members.
The best advice I could give, having been down the path you’re now treading, is enjoy the W&W period, disclose advisedly, eat and exercise well, get non live vaccinations, be careful with your skin because we CLL’ers have an 8/10 greater chance of skin cancers and don’t attribute everything to CLL. Never allow infections or high temperature to go unchecked.
Most importantly, learn ‘your enemy’ and engage positively with the health team to get the best care. The W&W period is used to plot and monitor progression and they’ll be times you’ll feel much more unsettled than your haematologist who will see this as routine at this stage. Don’t panic about slight rises in levels and there’s little concern about a lymphocyte level under 30.
Wishing your husband a CLL journey that’s boring and uneventful but there’s always support and advice on here for you both. This can be very hard emotionally on partners.
Thank you so much for taking the time out to message me!
We have 6 children between us aged 11 to 24 and have decided not to tell them or our wider circle of friends at this time. Our thinking is why worry them until we have to. We have only confided in a handful of family and friends as I agree with your thinking on this one.
It's a scary time and we hope as you say the journey for the time being is an uneventful one! I'm hoping once we've got our head around it and educated ourselves a bit more, we can carry on life as normal. We were given a card for a specialist nurse so will definitely talk to her over the coming weeks. I do appreciate there is no immediate rush for action but am just wanting to start 'the journey' in the right place and have knowledge of any trials and therapies which could help. Hopefully my husband will be well for many years to come. I will make great use of this forum and want to thank everyone who contributes to it for their time and support.
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It is standard procedure to vist a consultant every 3 months. It allows the haematologist to see if there is any 'pattern' development in the blood results.
I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment.
My experience was having 3 month visits for a couple of years, it then became every 6 months, and now I only visit annually.
Other blood tests are usually ordered by my GP if I am poorly, just to be on the safe side.
My consultant is a haematologist ... but I told her that if treatment is imminent, that I would seek a second opinion from a CLL specialist. She is happy with that.
The functional impairment of CLL means that you have a compromised immune system
... so my CLL experience has been about developing a relationship, with my GP,s in dealing with any symptoms that may arise, whilst my consultant Watches and Waits.
' He has no obvious symptoms ' ... is what we like to hear.
Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.
My basic tip ...
Be pro-active, be aware of hygene, be especially aware of what other people have handled, hand rails, door handles etc etc due to the risks of infection ... I carry hand gels and wipes when out and about, it becomes second nature.
We all remember how it felt when we heard the word Leukaemia, on here you are most certainly not alone with CLL.
Thanks very much for your reply! It actually made me feel very emotional to know I can come on here and talk to someone who understands!
At the moment, I think we both feel overwhelmed but once we've had time to let it settle, we will crack on with life and stay positive! It's great to hear that you've stayed well and this gives me hope which is much needed!
Your advice is very much appreciated!
Our plan is to take care, eat and exercise well to stay strong for as long as possible. We may seek a second opinion for information purposes and to keep us informed of any trial etc.
We are 25 mins from London so happy to travel in. Is UCL for example considered to be the best place?
" ... Our plan is to take care, eat and exercise well to stay strong for as long as possible "
That is exactly the right thing to do ...
Meanwhile, there is a wealth of patient experience here for you to use ... any new developements/treatment options will be posted ... it is also a good place to have a rant ... at least we can rant to those who understand what we are ranting about ... !
Partners have special dispensation to rant ...
( you should hear Mrs ygtgo when she gets started ! )
Welcome to the community...this is a great site! You have already heard from some of the best and there isn’t much I can add only I wanted to welcome you and wish you only the very best! 😍☘️💕🙏
Welcome Cile, I’m also a new community member who was also diagnosed CLL a couple of months ago. I’m on W&W and I’ve learnt so much reading inputs in this lovely community, they are the best!
I was dx two years ago and have watched the gradual decline in my blood numbers. It has been a slow decline, but I am not yet in need of treatment. While in the same two years, I have seen chemo go from the primary treatment option, to being replaced by the newer targeted therapies. My point is, that the treatments are changing rapidly and for the better. So, it is best to look upon W&W as an opportunity, as better options keep coming along.
While we all wait, the best use of our time is to educate ourselves about our condition, work on improving our general health, and live our lives.
You need to go thru the entire list of emotions, battle your demons, slay your dragons... but you share with us, for we all are on the same journey.
There is plenty to be upbeat about too. There is opportunity, advice and a lot of excitement and optimism in the world if CLL treatments.
As said... at some point you must see a CLL specialist. Before final treatment choice.
Remember you can search this forum, there is much excellent advice, links and guidance. Just keep an eye on the date as for treatments it's important to remain current as things change
Thanks! It certainly is a rollercoaster at the moment and we are working our way through the full list of every possible emotion. We have decided to get a referral to a CLL specialist as we live within 30 minutes travelling time to UCLH and just feel we want to start our journey in the hands of a specialist centre.
Thank you so much for taking the time out of your day to reply, it makes all the difference!
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