My husband who is 55 went to the dentist in October and in the checks on his neck she found a lump under his chin. He was referred to Oral and Maxifacial just to get this checked. He had an appointment made for the 9th of Feb but this was brought forward to 17th Jan. Nothing on the letter to say something was wrong, nothing so he went alone.
The consultant who has saw told him they had found a type of leukemia but haematology would be in touch as its not their speciality!
Luckily on of my friends is a Dr at the same hospital and went to find out what he could. Haematology said its low grade Chronic lymphocytic leukaemia (CLL) and have generated the letter for his appointment.
To say we are floored is an understatement. We lost my father-in-law to lung cancer last March and my only uncle to pancreatic cancer in November.
Anyone experienced this and have a idea of what we can expect?
Hi @TJ3001 a great big welcome to our forum.
I had a gynae op and the gynaecologist said ’ I have never had to tell someone this before but you have Chronic lymphocytic leukaemia (CLL). I cannot do any more for you, go back to your GP’ and I was out of the door. I came home and wrote my will and funeral music.
I was 53yrs old and that was 20 yrs ago and I have never had any treatment, I am on what is called ‘active monitoring’ or ‘watch and wait’
I have been a very lucky girl, some people have treatment straight away.
I have an older friend in Los Angeles and our Xmas cards crossed in the post that year and she had been just diagnosed with Chronic lymphocytic leukaemia (CLL) and was just going to have treatment, she is now over 90yrs old.
My 70th birthday was my best ever.
Yes, you will both feel floored that is natural, you might both deal with the shock differently, there is no right or wrong.
I was in shock and felt in a bubble with the world going on around me for a while, I think my mind needed to process it in it’s own way.
I also think that the experience of our other relatives compounds our fears.
I went to my GP and she referred me to a haematologist.
I have blood tests and the haematologists perhaps orders other tests at regular intervals, my blood tests do fluctuate and of course my eyes go to the abnormal results.
I always get nervous before and during all tests, results and appointments.
I have found it an emotional rollercoaster and there is a lot of waiting for things.
If you have any questions I will share my experiences and there is a lot of information on the Blood Cancer UK website Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
What I would say is to really look afterand be very kind to yourselves and please do keep posting
Hello @TJ3001 and welcome to the forum. @Erica has given a great reply.
It sounds like you have had such a hard few months and must be still be grieving your losses. It must have been really difficult to hear another diagnosis to somebody so close to you.
Im sorry he had to go on his own to. He will have you by his side next time.
When is the next appointment? Make sure you write all your questions down.
Take good care of yourself and use the support line of you need to talk things through.
Sending lots of love x
That is good news that his appointment is tomorrow. Be pleasantly assertive and ensure all your fears and questions are answered.
An early start tomorrow and look after yourselves and please let us know how you get on.
Been for our 1st hospital appointment. Ghings were explained really well. The Dr had a good feel for any further lumps and cant feel any except for the one in his neck. CT scan to be done.
His lymphocyte ? Count was 24. No idea what that means!
Hi @TJ3001 I am so glad that things were explained really well, it does make a difference.
I am also glad that you know when you are going back.
Perhaps now look after yourselves.
Hi welcome to the forum. My Chronic lymphocytic leukaemia (CLL) was diagnosed in 2022. I had bloods taken as I was having headaches and got called back to GP. I thought I was going in for medication for migraine and came out with an urgent referral to haematology. My GP explained that blood tests are usually turned out by machines but someone in the lab realised that the last few times my bloods had been done the lymphocytes were high so they looked at it under the microscope and the cells were abnormal. So I understand your shock and how upset you feel right now. I don’t think it’s uncommon for Chronic lymphocytic leukaemia (CLL) to be diagnosed incidentally. I have been on a watch and wait since then with 6 monthly reviews and remain stable. I get tired at times but other than that it doesn’t impact on my life. Take your time to get your head round it get your husband to rest when he needs and take care of you as it’s a shock for the family too x
Hi. I was diagnosed with Chronic lymphocytic leukaemia (CLL) last September. After the initial shock wore off, and I stopped reading about it, the symptoms and treatments, I’ve now settled down to feeling ‘safe’ after each blood test. I’m on ‘watch and wait’ and the support I’ve received from Blood Cancer UK as well as the Chronic lymphocytic leukaemia (CLL) Support Group has been incredible. Erica is brilliant and her calm responses have been very helpful.
Good luck. I hope your husband has a good diagnosis and feels comfortable about everything very soon. Best wishes, Dermot xx
Hi the same with me.on watch and wait,finding work very hard at the moment though.had to take a short nap in the middle of my shift and never really got over it.my sleep the next morning was not great either i work nightshifts.woke up with a pounding headache that kind of ztay with me for a while even with pain killers.experincing aches and pains in my back and stomach but ive been to docs who examined me and said stomach was okay and ive recently had my blood check up on the 4th of January.anybody else had this experince.
Hi @HenrikLarsson67 I have Chronic lymphocytic leukaemia (CLL) and I manage my fatigue.
However I don’t work night shifts.
When I was working full time I did find that I worked, slept and ran a house, there is more to life.
No, I did not get the headaches or aches and pains in my back and stomach.
Please do let us know how you get on and really look after yourself