Hi Nicola75
Thank you for your welcome. it’s reassuring to know there are people like yourself out there to offer comforting advise and support. I am feeling ok and not unwell thankfully as I try to get my head around the recent diagnosis.
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Hi Erica
I first spotted your pic when I began reading the Chronic lymphocytic leukaemia (CLL) booklet ‘living with Chronic lymphocytic leukaemia (CLL)’ from my consultant and was encouraged to read you have been living with Chronic lymphocytic leukaemia (CLL) since 2008 after your researched prognosis of 5 to 10yrs. I note to that you are very active in your support for other sufferers so it’s good to know you are there! thank you for your reply!
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Hi Pickle23
Thank you for your reply and advice it is easy to let things get ahead of you so you’re right, small steps, one day at a time. I hope you are doing ok and I hope that those thoughts first thing in the morning will lessen soon!
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Yes! Mine was uncovered in 2014 when I had my Chronic lymphocytic leukaemia (CLL) diagnosis. My numb toes/pins and needles have got slowly worse over the years, but there’s not much they can do other than give me the meds. You’ll just adapt and get used to it in a while and forget what it’s like not to have it at some point too. I have found that not thinking too much about these symptoms helps enormously - if I do focus on them, it seems to feel worse! I am having treatment at the moment and just started cycle 4 of 12 and believe me, the side effects of the treatment make my other symptoms before seem trivial! The pain I am experiencing is so bad that I am on morphine tablets and Oramorph and even then, I get bad breakthrough pain - I just hope it’s all worth it!
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So sorry you’re having to go through such a rough time at the moment but I’m sure it’ll be worth it. Sending lots of love.
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Hi @SpaceAngel yes I have numb toes too, I put mine down to reoccurring shingles, but who knows.
I am so sorry the side effects of your treatment are so bad.
Sending you love and hugs xxxx
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I was just wondering if anyone with Chronic lymphocytic leukaemia (CLL) who is on watch and wait has noticed their platelets drop, mine are still in the normal range but have dropped 60 in 6 weeks, is this normal?
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Hi @Pickle23 personally, and perhaps everyone is different, but my platelets seem to fluctuate more than any of my blood results and yes, they are in the lower range.
Non medically I think we are monitored at regular intervals so that trends can be picked up on. Personally, I don’t think that there is no one model fits all, we are all complex beings.
Take lots of care
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Hi. I’ve recently had a cold (not covid) which is still hanging around after 4 weeks as well as a cough for 2 weeks and feeling lethargic too. I wondered if this is due to my immune system not working on all cylinders due to Chronic lymphocytic leukaemia (CLL). As it’s early days since my diagnosis in October I am just curious if this could be something to expect in the future.
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Hi @woody a good question.
I will copy your post to the Blood Cancer UK nurse advisors just in case they can add something, @BloodCancerUK_Nurses otherwise it might be a question for your CNS (Clinical Nurse Specialist), consultant or GP.
Look after yourself
Hi Woody,
Thank you so much for sharing this with us all. I hope you’re feeling okay today?
You’ve raised a really important point. It is common for people affected by blood cancer to have a weakened immune system. This can simply mean that coughs & colds may take longer to fully recover from or indeed you may find you are more suspectable to infections.
May i ask, have you been able to raise this with your GP yet?
A good general rule of thumb to go by is that if you are experiencing a cough for longer than 2 weeks with no signs of improvement you should alert your GP so they can check you over & rule our any signs of infection.
In case it is also helpful our staying safe page below talks through some other important information for those who have been newly diagnosed with blood cancer- Blood cancer and staying safe | | Blood Cancer UK.
Please also know that our support line is always here for you should you ever have any queries or concerns that you want to talk through- 0808 2080 888.
Take Care, Lauran
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Hi Lauran.
thank you for your reply and advice concerning my query. I did contact my GP and spoke to him via a call back and not in person. When I explained I was recently diagnosed with Chronic lymphocytic leukaemia (CLL) and wondered if my immune system might be affected, hence the cold and cough was hanging around for longer than normal and also feeling below par, he basically dismissed the idea and said he doubted it had anything to do with it! I will take your advice and go back to the GP and check out the blood cancer staying safe information.
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Glad to hear you spoke to your GP but I’m sorry to hear you felt dismissed by him. As Lauran says, it’s important to keep an eye on things like a persistent cough, even if just to give you peace of mind. Let us know how you get on when you speak to your GP again? And if you do want to talk, don’t hesitate to give our Support Line a call. Hope you’re feeling par or above par soon!
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Thank you Ellie I will see how things go when I next speak with my GP good to know there is a support line if I need it!
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Hi @Pickle23 I have been thinking about you, you fellow Chronic lymphocytic leukaemia (CLL)’er.
How are you doing now?
Look after yourself
Hi @Erica . Thank you for thinking of me. I am still struggling to come to terms with my diagnosis to be honest. I have had an appointment with Occupational Health at my work and they have suggested some adjustments to take into account my fatigue and the anxiety that I am experiencing with my diagnosis. I had bloods done again yesterday so just waiting on the results. I have little support from anyone so finding this quite a lonely journey to be honest so it’s really appreciated that you reached out to me.
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Hi @Pickle23, I’m so sorry to hear you’ve been feeling anxious and have little support around you at this time. It’s good to see you’re finding value in being supported on this forum. I just thought I’d reach out to see if you’d like a phone call from a member of our Support Team? We are open Mon 10am to 7pm, Tues to Fri 10am to 4pm, and Sat/Sun/bank holidays 10am to 1pm. You may either call us on 0808 2080 888 or indeed we can call you. We’d be happy to support you and talk through other ways in which you might be able to access support for yourself, too. If you’d prefer not to talk on the phone, you can also email us on support@bloodcancer.org.uk
Take care of yourself.
Best wishes,
Tanya.
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Oh @Pickle23 it is so natural to be struggling coming to terms with your diagnosis and I am glad that your Occupational Heath know and are trying to make reasonable adjustments for you, please keep talking to them.
I am so sorry that you feel you have little support from anyone @TanyaBloodCancerUK has given you the Blood Cancer UK support line details, I have found that they are very helpful and friendly
I remember feeling in a bubble with the world going on as normal around me, and as t5he festive season approached all I saw was happy families celebrating which added to my feelings of isolation
I absolutely hate waiting for test results.
You are now part of our forum supportive family, so when you feel lonely, please do post on here.
Be ever so kind to yourself and we are all here for you.
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That must be really thought @Pickle23. You have your forum family and the support line whenever you need us. Are there any support groups local to you?
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Hi @Nichola75 .I haven’t found any local support groups to me at the moment but my work Occupational Health have suggested I try and get some mental health support following my diagnosis which I will try and access through my work but not sure I feel ready to discuss my diagnosis.
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