I have just had an initial Chronic lymphocytic leukaemia (CLL) diagnosis I and am awaiting further tests to determine what stage of Chronic lymphocytic leukaemia (CLL) I am at.
I’ve not had any symptoms but find that since my diagnosis I am imagining all sorts of lumps, bumps, odd pains and anxiety. odd pains and anxiety. Did anyone else experience the same thing? I’m sure part of this is because I don’t have a full picture of what’s happening but any reassurance you could give me would be very much appreciated.
Hi @mar and I am so glad you have found us.
If you did not have any symptoms then like me your diagnosis must have been quite a shock, I was in the same situation and it was for me.
I have a smile on my face because I really remember imagining all sorts of lumps, bumps, odd aches and pains and an awful lot of fear and anxiety.
I felt in a bubble with the world going on around me, the only person in the world, very isolated and a weird sensation of wanting to pull the Chronic lymphocytic leukaemia (CLL) out of me.
That was 19 yrs ago and I came home and wrote my will and funeral music.
You are not alone you are now part of our forum family.
I think it was the shock and the unknown that was scary for me, the not being in control, the waiting on others and this new medical speak.
Personally it could have been me writing your post.
I would say really look after yourself, have you any support?
Please keep posting how you are and take care.
I am 74 years old and it is two years this month that I was given 6 months to two years to live as I had Chronic lymphocytic leukaemia (CLL) with p17 deletion with many of the symptoms you mention. I have been on a Global Trials Program of the next generation of trial drugs and I am now in deep remission. My haemotologist who is arguably one of the best haemotologist in Australia tells me that my life expectancy is now in the order of 8 to 10 years.
If I were you, I would get a second and if necessary third opinion of the best way forward.
Today I have none of the initial symptoms and I am tolerating the medication very well.
I still have regular blood test and quarterly CT scans with iodine and yearly bone marrow biopsies. The bone marrow biopsy shows that the P17 deletion is completely gone and there is only minuscule Chronic lymphocytic leukaemia (CLL) in my blood.
My energy levels are back to normal and I am doing all the things that I use to do.
Hi @mar, a very warm welcome to our community. Thank you for sharing about your diagnosis and it’s very understandable to be feeling anxious at this stage. I can hear that you’ve been given some information, but are still awaiting further tests and more details- it’s so normal to be feeling worried when coping with uncertainty. If you’d like to talk this through at all, please don’t hesitate to call our Support Team on 0808 2080 888. We’d be happy to support you and can help you prepare for your next appointments, talk you through support that’s available to you, etc- if that’d be useful at all.
Thank you so much everyone for your replies and support.
My Chronic lymphocytic leukaemia (CLL) was picked up as part of a regular Mammogram monitoring programme. The mammogram was fine but showed I have enlarged lymph nodes. I’ve also had a blood test and been told my white cell count is 60 which apparently is quite high but no other info at the moment.
I’ve got an appointment now for the 1st Feb with a consultant and will be going in much better prepared. Hopefully, I will know more in a couple of weeks and my stress levels will reduce even more.
Welcome @mar
I know exactly what you mean . It’s five years since I was diagnosed with NHL . I still get a pain in my big toe and worry myself silly. It is only natural. I have learnt to trust my team who know me well and most importantly know what is and isn’t a problem that needs to be investigated. You will get there too. We are all here for you on this journey so feel free to ask about those niggles I’m sure someone will have had a similar experience at some point along the way and will be able to offer their support. Take care
hi mar
recent Chronic lymphocytic leukaemia (CLL) diagnosis here too. i’m in the watch and wait category. i only found out about the diagnosis because i’m hyper vigilant (hypochondriac since birth) and was given bone marrow biopsy after reporting drenching night sweats over a period of years (since 2006). the night sweats were episodic and mild to begin with but now full on every night. until i had the biopsy i was being fobbed off with ‘anxiety sweats’. at the same time, it’s worth remembering how powerful our subconscious is so if you’re imagining the worst then it’s possible that aches and bumps may appear. i had a complete meltdown in 2009 (over some lymph node enlargement) and got into a really bad place. i needed constant reassurance that i wasn’t dying. it was horrible. so i totally get what you’re going through. i started taking sertraline for anxiety and it’s really helped. i’m not frightened any more…still vigilant…but not freaking out. as long as you’re being monitored then that’s the best place to be. and what helps most for me is the knowledge that science will very probably have all cancers licked in the not too distant future.
what actually reassured me the most was joining this forum and hearing the stories from people like erica. it made me realise that a diagnosis doesn’t mean that it’s the beginning of the end. it might just be something you die with…but not because of.
how kind of you to remember my appointment last week.
I met the Dr on Wednesday and he was very patient explaining Chronic lymphocytic leukaemia (CLL) and the tests and vaccinations I should have. I had blood tests organised on the day I was there and am having a CT scan next week. I’m not sure if it’s normal to have a CT scan straight away or whether it indicates they are more concerned about the stage I am at. I didn’t think to ask at the time. He was generally very encouraging and caring as he could see I was struggling a bit with my diagnosis.
I was lucky to be supported by my husband and cousin who have been amazing over the past few weeks.
I’ve got another appointment mid March and then I will have a better idea of the next phase of this journey. In the meantime, I’m just trying to carry on as normally as possible.
Thanks again for your message. I hope you are doing well too.
Hi @mar please let us know how you get on at your appointment mid March.
Your husband and cousin sound amazing and a great support.
Carrying on as normal sounds good to me, that is what I do.
Look after yourself
Don’t be too concerned about having a CT Scan. I have a CT Scan every 3 months with a dye in it. The dye shows up your glands
Originally my glands were the size of gollf balls.
Now they are the size of a sultana. I had a routine CT Scan yesterday and I will get the results tomorrow morning. I will let you know the results tomorrow.
I’m sorry to hear of your recent diagnosis. From your posts, you seem be taking a very positive and pragmatic approach which is great under difficult circumstances.
It’s very pleasing to hear about the support from your family. From experience, this was so beneficial to me when I was just diagnosed in early 2016.
Your Dr sounds to be very comforting and helpful so I hope you feel better after the appointment with him last week.
Please let us know how you get on in March.
Look after yourself and hope to hear from you soon.
So I had my follow up appointment with the Consultant today and have had the SLL/Chronic lymphocytic leukaemia (CLL) diagnosis confirmed. It seems I am at Stage B but some of the test results have not been returned yet, so I will get further information at the next appointment in six weeks time. He was very encouraging about the options available should I need treatment in the future.
I’m currently on Watch & Wait. I’m also hoping to get some support in dealing with anxiety over the diagnosis which has crept up on me recently.
@mar thanks so much for updating us and it seems good news that you are on watch and wait.
I had some counselling and found it very useful, I hope you get some help with your anxiety over your diagnosis.
Please keep posting with how you are doing and be kind to yourself
I completely understand what you are going through but if it’s any consolation it does get easier.
I’m now 10 months into my diagnosis and am living life as nearly normal. I did have to start treatment in August but I m doing really well. I feel great and my blood results are improving.
I still have good and bad days as dealing with the anxiety of this condition can be difficult but having a good consultant and explaining your concerns to them really helps. There are also fantastic organisations (like this one) who can offer help and support.
It can feel a very lonely time initially but there are loads of people who are there to support you.
