Hi Kay,
Thank you for that. Glad to hear you are getting the attention, two weeks wow. Unfortunately i live in a third world country (Wales) been waiting six weeks now, but thats good here. I will keep posting my updates. Cheers.
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Dear @Artstudio,
Welcome to the Forum and thank you for posting. I am sorry to hear that your symptoms are stopping you from enjoying your hobbies. Do mention this to the Haematologist tomorrow and any other questions you do have.
Here is our information regarding Chronic lymphocytic leukaemia (CLL) https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-lymphocytic-leukaemia/ and our new diagnosis information too I've just been told I have blood cancer | Blood Cancer UK. Hopefully they will provide you with some information in advance of tomorrow.
If you do want to dicuss anything after your Consultation please do nt hesitate to call us: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
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Hello and a big welcome to the club non of us wanted to join. However, we are all here and we all support each other through good times and the not so good. Our admin and support team are always here to guide us.
Personally I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018 when I was 66. I was incredibly shocked because the diagnosis came as a total surprise, I was being investigated for a possible cyst on a lymph node.
I was able to remain watch and wait for 3 years before starting treatment with Acalabrutinib which I have tolerated very well. My blood numbers are considered back in normal range now. Would suggest that you join the Chronic lymphocytic leukaemia (CLL) Support Association, they have an under 60s group which you may find useful.
Also if you have not been allocated a Community Nurse Specialist do ask for one, mine is my rock and will always seek out answers for me.
Take time to adjust to this situation, ask as many questions as you need to. About all stay calm, I was told at diagnosis that this was something I would probably die with NOT OF.
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Hi @Artstudio sorry to hear that you suffer from bouts of depression and I think you are right that aches and pains, excessive bouts of tiredness (often called fatigue on here) and Covid times must exacerbate feelings of depression.
I don’t know if you might like some help with those feelings, if so it might be worth asking about any services available in your part of Wales with your GP, Macmillan Cancer Support or Maggies Centres (if you have them near you).
Some people don’t want to and that’s fine, someone once said to me ‘that it is a strength to ask for help, not a weakness’, I had been brought up in the stiff upper lip, don’t show emotions and good little girls should be seen and not heard times.
What pastimes do you enjoy/
I am a nosey walker and I love my music (anything from the 60’s onwards) and a Pilates girl.
You now have support on this forum, be kind to yourself.
Thank you Gemma for the info, will certainly look it up.
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Thank you so much for your support Kitchengardener, i will certainly ask for a CNS tomorrow. Cheers
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Hello and a big welcome to the forum. Everybody has already given such good advice. I hope you have all your questions ready for tomorrow. Please let us know how you get on. We are all here to support each other 
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Hi Erica,
Yes fatigue would be a better description, but when it hits you all of a sudden when you were fine a moment ago its a little disconcerting. I seem to be managing most of my depressions at the moment by meditation techniques that i learnt in my late teens/early twenties, if anything changes i will certainty seek help. As for my pastimes, i have always been very active and have a very large garden and grow tons of fruit and veg. My chickens keep me company as they did during lockdown and they dont answer me back, well not too much. I also cook, but these days mainly sourdough bread. My main one is as a full time artist, mainly sea/landscapes in watercolour and oils but will paint anything if it keeps still long enough.
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Hi Nichola, yes there has been such good advice and support off people. I was a little wary about joining the forum but i am glad that i have. Thank you everyone. I am just about to write down as many questions as i can think of for my appointment tomorrow as i do tend to forget things these days.
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What lovely pastimes/full time occupations @Artstudio you have.
Have you painted your chickens yet or are they in the category of don’t stand still long enough?
I am really glad that you have meditation techniques that help you. There are some on the Blood Cancer UK website, that some people have found helpful.
Take care of yourself
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That all sounds amazing. Especially the painting that’s really impressive . Sudden overwhelming fatigue is certainly a problem. I am always on the go so am having to learn to pace myself. I have resigned from my skinny pigs HIT class and joined a local spa so I can do more gentle exercise and also relax. Step at a time !
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Ha, no i haven’t painted the chickens yet, i should, but they are fun to be around. Bright even with a pea sized brain, cheeky and funny.
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Hi, yes a step at a time will do. Almost finished my list of questions for tomorrow, going on to the second side of an A4. I would never have remembered all of them. Thank you all.
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Hi @KayC
Just thought I’d let you know not to be too concerned or let it bother you while you’re on W&W! I was diagnosed at age 50 (8 years ago) and, until the pandemic, apart from 3-monthly hospital appointments, Chronic lymphocytic leukaemia (CLL) didn’t affect me in the slightest. I am now about to start treatment as my bloods have gone crazy, but in terms of how I feel, apart from excessive bruising and a bit of fatigue, I still don’t feel ill 
On the whole, apart from having to shield, I managed a good time ignoring my diagnosis completely and got on with life. As my original consultant said when I first got the news that I had Chronic lymphocytic leukaemia (CLL) - you are much more likely to die WITH Chronic lymphocytic leukaemia (CLL) than FROM it!
No cancer is good, but with friends and family who have had breast cancer and brain tumours, I feel very blessed that Chronic lymphocytic leukaemia (CLL) isn’t too much to worry about!
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Thank you and good luck with your treatment x
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Hi KayC
Sorry you’ve been diagnosed with Chronic lymphocytic leukaemia (CLL). Yes it is a shock when your first diagnosed as I found out in Aug 2017. I’ll explain my experience in the hope it helps you !
As I said I was diagnosed with Chronic lymphocytic leukaemia (CLL) in Aug 2017 like you I was in a state of shock & upset that weekend (my husband who’s more sensitive than me was worse). I’ve always been a very positive person. So I thought what do I do ? Feel sorry for myself & make myself miserable & make my family (children, grandchildren) & friends miserable ? So nobody wants to be in my company ? That’s not me, so I decided to be as positive as I could & take the attitude that whatever was ahead I needed to be able to deal with it !
I was on watch & wait (monitored every 3 months) from Aug 2017 to April 2021. Dr Camacho asked me if I would be prepared to go on one of the trails for Chronic lymphocytic leukaemia (CLL), that she ran at Blackpool Victoria & I said yes. When the time was right for me to have treatment, when my red blood cells started to go below 100. Meanwhile covid struck so she wasn’t taking on any new patients for trails. My red blood cells stayed around 100/90 for about a year, I notice I had much less energy. In April 2021 Dr Camacho decided to start treatment (she had already gone through the options with me) as I was still young & fit as she put it lol ! The treatment (targeted chemo) was going to last 12 months & used two different drugs (obintuzumab for 6 months by drip & Venetoclax in tablet form for 12 months). I just wanted the treatment with the best outcome, I wasn’t bothered how long the treatment lasted.
I stared (April 2021) the first dose of obintuzumab (1 ltr) which they gave me 200mls one day & the other 800mls the day after (just to see if you have a reaction to it). I did have a reaction to the first dose & my red blood cells dropped to 59 (normal for me before Chronic lymphocytic leukaemia (CLL) was 130) & no white blood cells, so they built me back up again. 2 pints of blood & I had to give myself white blood cell injections so couldn’t have the treatment the following week. But the week after that I had the full 1 ltr of obintuzumab & I was fine. The first month I had 3 doses & I a month for the following 5 months (8 rounds in total). I had to go to the day unit at the hospital at the beginning for 3 or 4 times a week, I drove myself (only live 14 miles away from the hospital). Then 3 weeks after starting the treatment they started me on the Venetoclax tablets (taking the drugs at the same time) working them up from 20mgs per day to 400mgs per day over a five week period. The asked me to stay in hospital for a night for the first dose of Venetoclax as they were concerned I might have a reaction after the reaction I had had to the first dose of obintuzumab. But I didn’t have any reaction & everything was straight forward from there on !
I finished my treatment in April 2022, I had a CT scan (l had a chest X-ray & CT scan before my treatment started). Then in May 2022 Dr Camacho told me that I no longer had Chronic lymphocytic leukaemia (CLL) in my blood, but that didn’t mean it could never come back. There could be some Chronic lymphocytic leukaemia (CLL) hidden way back in my bone marrow ! Dr Camacho will be monitoring every 3 months, then every 6 months then if all goes well every 12 months. She will need these stats for her records to see how the treatment continues to work !
I asked Dr Camacho how long would it be before I needed treatment again ? And she said she didn’t know it could be 5 years it could be 10 years ! I said how long have people gone before they need treatment after having the treatment I’ve had ? She said they haven’t needed any further treatment up to now ! She said I can’t possibly say that this treatment is a cure for Chronic lymphocytic leukaemia (CLL), but it’s looking like it could be !
So I’m clear of Chronic lymphocytic leukaemia (CLL) & enjoying family life, so stay positive !
Sorry I’ve gone on a bit, but I wanted to give you a full picture of what I’d experienced. And if you have any question you want to ask me ? Please feel free to do so !
Good luck & stay positive. Dusty
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Thanks so much @Dusty for taking the time to share your experiences, and you didn’t go on you just gave your complete experiences.
Your positive attitude shines through and enjoy every day. Look after yourself
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Erica
Thanks for that.
Dustya x
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Wow this is very interesting thanks for taking the time to share so much information. Sounds like you have had a bit of a tough time for a little while through treatment. Incredible that you are clear of Chronic lymphocytic leukaemia (CLL) right now as I thought it wasn’t curable so this is very exciting. Will watch with interest
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KayC, there are so many different ways Chronic lymphocytic leukaemia (CLL) seems to progress in different people it’s virtually impossible to predict what the future holds. But for what its worth, my experience is somewhat like others who’ve posted. I was diagnosed about 12 years ago, have been on watch and wait ever since with initially 3 monthly blood tests but now 6 monthly.
In fact my Lymphocyte and WBC counts have been falling for the last few years so I’m very lucky and it has little effect on my life. I only joined the various (very helpful) forums during the pandemic when I realised I could be more vulnerable to Covid.
I’m now 71 and any fatigue or slowing down i just blame on increasing years!
So as others have said; stay positive you may find it has little effect on your life.
Regards, David
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