Hi @Kitchengardener2 I have been thinking of you how did your telephone appointment go?
Look after yourself
Hi Pickle23, I too was diagnosed with Chronic lymphocytic leukaemia (CLL) back in 2019 and placed on watch & wait and can completely understand the anxiety you are experiencing. Try to accept the condition and live your life normally. I have found that there are many persons who have had the condition for many years and continue enjoy life well into their 70âs and 80âs. I am 69, have had covid 3 times,and got through it relatively easily each time.
Up until last year my bloods were tested every 6 months but following my last test was placed on 12 month watch. So, try and be positive, hope for the best and listen to the Forum/Nurse advisors on this site
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Hi Pickle, fellow CLLer here!
First and foremost, good idea to come to this Forum as itâs helpful to connect with people who know exactly what itâs like to get a Chronic lymphocytic leukaemia (CLL) diagnosis!
I hope I can reassure you, because Chronic lymphocytic leukaemia (CLL) is a disease you are most likely to die with, not from 
I am now almost 59 and was diagnosed 9 years ago, also when I had kids at home and was running a global consultancy business and I was shocked for a few days too. However, you honestly will be able to virtually forget youâve got Chronic lymphocytic leukaemia (CLL) in a few weekâs time and get on with your life just like before. Watch and Wait ranges from 3 to 6 monthly check ups, so it seems like your consultant is seeing low levels and slow progression if you are on 6 monthly appointments - thatâs good news!
For the first 7 years since I was told I had Chronic lymphocytic leukaemia (CLL), I was able to carry on with my life without a care in the world, I simply had 3-monthly appointments with my consultant and watched as my blood test results very slowly showed progression. The only thing that then impacted me was the pandemic as I was suddenly in the CEV (Clinically Extremely Vulnerable) group and had to shield to avoid catching Covid and my ability to run my business was curtailed as I could no longer travel or meet people.
Fast forward to August this year and I have only just started to have chemo treatment for my Chronic lymphocytic leukaemia (CLL) - so that means I had over 9 years of nothing needing to be done and, indeed, I may never have needed any treatment!
Iâd recommend that you jump onto Chronic lymphocytic leukaemia (CLL) Support Association and join the regular webinars they run for patients with experts presenting all sorts of helpful stuff. One thing you will come to realise is that most people with Chronic lymphocytic leukaemia (CLL) NEVER even need treatment and live healthy, happy and long lives. There are probably thousands of people who live very well, not even knowing they have it, because it has that little impact on you in terms of feeling/being ill.
Please try not to worry too much, or else youâll be giving yourself a negative impact which you donât need to have - honestly, you and your family can carry on just as before and ignore the label of Chronic lymphocytic leukaemia (CLL).
I am writing a blog about my own Chronic lymphocytic leukaemia (CLL) treatment journey, which I hope youâll find helpful. Itâs very honest and hopeful! (Link below). I found the best way to manage Chronic lymphocytic leukaemia (CLL) is to put my big girl pants on and just enjoy living life to the full!
www.mybloodycancerjourney.co.uk
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Hi @Pickle23, donât worry, there are lots of different treatments, sure it would be better not to be suffering with Chronic lymphocytic leukaemia (CLL) but things could be so much worse. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018 and had treatment in 2021, treatment has finished and my blood levels are normal. There are things I suggest you do, try to avoid coughs and sneezes and of course covid but other than that, do your best to stay fit and healthy and youâll be fine.
There is of course another cost that no one tells you, thatâs the cakes and biscuits for your haematology staff 
This is the best forum for advice and an arm around the shoulder.
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Hi Pickle23
I certainly understand how your feeling at the moment and hope my experience will help you !
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in Aug 2017 at the age of 60, like you I was in a state of shock at first. Iâve always been a positive person. So feeling sorry for myself didnât last very long, as I didnât want to make my husband (he took it much worse than me), my children and grandchildren feel upset and sad.
I was on watch and wait from Aug 2017 until May 2021 with no symptoms, then my haematologist decided to start me on treatment. Due to my red blood cells being affected (reducing from 130 to 95) and my energy levelâs depleting. My haematologist put me on targeted chemo treatment which consisted of two different drugs. Obintuzumab which was given to me at the day until at the hospital (6 months treatment) and Venetoclax in tablet form for 12 months. The staff held my hand every step of the way and were excellent throughout the process. I only had one setback at the beginning of the process, when they had to build me back up with a couple of blood transfusions. And I had to give myself white blood cell injections in my tummy for a week, then I carried on with the treatment. I finished my treatment in May 2022 and Iâm now free from Chronic lymphocytic leukaemia (CLL) and just being monitored every 6 months.
Please ask me any questions you like and I will do my best to answer you as honestly as I can (from my own experience). Good luck and stay positive and strong for your children and yourself.
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Sorry to hear of your diagnosis @Pickle23 . Itâs a tremendous shock to find out youâve got a disease that you know very little about. Other people on this forum often say to write down all of the questions you have so that you remember to ask your medical team when you see them and I think thatâs good advice as I was completely alone when I got my diagnosis of Myeloma and didnât have a clue what were the things that I wanted to ask so it all just swept over me and in a few days I was undergoing treatment. I hope things get better for you and you are able to find some comfort. Donât forget to be kind to yourself.
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Hi @Pickle23 I have been thinking of you loads, how are you doing?
You say that cancer has always been your biggest fear, yes, you are living that reality, but you are living it and so are we all on here, I have just been for a stunning walk along the riverbank.
Look after yourself, be kind to yourself.
@Erica thank you for thinking about me. Itâs been a bit of a rough week as have not been feeling physically that great recently. Waiting to get an appointment with my GP just to check me out and do some bloods just to check. I am grateful that things could be a lot worse but I am just finding it hard to accept and carry on with this cloud hanging over me all the time. Every time I feel unwell I fear itâs the Chronic lymphocytic leukaemia (CLL) getting worse and just worry this will be my life forever moving forward xx
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Hi @Pickle23. Have you considered any type of counselling? I know itâs not for everybody but helped me. I wish Iâd looked in to it earlier on in my diagnosis as why you describe is exactly how I felt x
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Pickle, you will naturally associate any small change to how you feel with Chronic lymphocytic leukaemia (CLL) at the beginning, but youâll soon stop! Chronic lymphocytic leukaemia (CLL) doesnât present itself like that, itâs your head, not your body making you concerned. It sounds like you may need therapy if you donât settle down in the next few weeks, as the last thing you want is unnecessary negatives in your life! Honestly, if you stick around on the forum, youâll soon understand that Chronic lymphocytic leukaemia (CLL) is something you really donât have to worry about too much at all - youâll have plenty of notice if your bloods show signs of progressing to treatment stage and even then, as Iâm experiencing now, treatments are more than bearable and very effective. I worry much more about climate change and the economy and future for our children than I do about my Chronic lymphocytic leukaemia (CLL).
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How are you doing @Pickle23?
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Hi @Nichola75 thanks for asking. Still feeling numb with everything. Been feeling a bit off colour recently and am suffering with pins and needles in my hands and feet so GP wants further bloods done on Monday to check my levels to see whatâs going on. Itâs just the unknown I am struggling to deal with as I am someone who always needs a plan to fix everything and this is one thing I canât fix.
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Hi @Pickle23 it is surprising how many of us on here are doers and always want a plan to fix everything and yes, we are out of control, our planned future is no more, and we just cannot fix it.
It takes a long time, but I now realise all we all have is the here and now to make the most of, but that does not mean we cannot make plans.
Look after yourself
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One day at a time. Sometimes just one hour but youâll get there x
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Hi all. Was just wondering if anyone with Chronic lymphocytic leukaemia (CLL) has been diagnosed with folate deficiency anemia as I have just been diagnosed with this and are now on medication for this. Itâs been causing pins and needles in my hands and feet recently and I just wondered if this is normal with Chronic lymphocytic leukaemia (CLL) as I have never suffered with this and eat tons of fruit and vegetables.
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Hi Pickle23
I have just recently been diagnosed with Chronic lymphocytic leukaemia (CLL) myself, it was quite a shock to the system when told! This is my first post after joining the forum a couple of weeks ago so it is all new to me! My present situation is similar to yours as my Iymphocytes are slightly high and I have swollen lymph nodes in my neck but like you no treatment is necessary at the moment and I hope that remains the same!
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Hi @woody and welcome to the forum. I think you have already shown how invaluable it is and how you can share/support others in a similar situation as you.
How are you finding things at the moment?
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Perhaps not at all helpful but i, and my son, both have this at present (folate deficiency) and we donât have blood cancer. Again, may be unhelpful but we too eat right etc but still have this as a recurring issue. Makes me think it may not be wholly related to your cancer. Just glad it has been found for you and being treated - if its folic acid youre on like us, i was told it always works to restore levels. All the best
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Hi @woody so sorry to hear about your diagnosis I know exactly how you feel. It is such a shock even though I kind of knew it may be coming. I have found this group so supportive since I joined a few weeks ago everyone is lovely and it really helps to find other people on the same journey as you. Take it one a day at a time although believe me it us really hard to do that as itâs still the first thing I think about every morning but am hoping in time this will lessen. Look after yourself and keep posting.
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Hi @woody welcome and you must be in shock too.
However you have already found that you are not the only one in your situation.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I have been on watch and wait (active monitoring) for 18 yrs with my Chronic lymphocytic leukaemia (CLL) and as you say long may it remain the same, however it means that we have to manage the symptoms that we were diagnosed with.
Please keep posting and look after and be kind to yourself.
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