My father is a Chronic lymphocytic leukaemia (CLL) patient in the observation period. His spleen is 19.5 cm long and 5.5 cm wide. He has 44 white blood cells, 93 lymphocytes, 87 platelets, is 59 years old, and has no P53 mutation. Does he need immediate treatment in this case? Which regimen is better for initial treatment?
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Hi @Jocelynliu,
I am so glad you have reached out to us & I hope you are doing okay today? I’m very sorry to hear of your dads diagnosis. I hope he is keeping okay and not struggling too much with symptoms?
You’ve asked a really good question but unfortunately one we cannot answer. As you will perhaps know by now the decision to start treatment will be made by your dads haematology team as they consider many different factors on an individual basis, including his disease status, symptoms and blood results. Therefor this is very much on a patient by patient decision which will be guided by his medical team.
Can i ask if your dad has been seen by his haematology team since he was given his diagnosis & has been given any information about wither he requires active monitoring ( watch & wait) or a plan of starting treatment?
In case it is helpful in any way Jocelyn i have linked to our webpage which talks more about treatment types for Chronic lymphocytic leukaemia (CLL) and what to expect if he does require to start treatment- Chronic lymphocytic leukaemia (CLL) treatment and side effects | Blood Cancer UK.
I know how overwhelming this can all feel so please do know that if you would like to talk things through with us at any point we are only a phone call away for you & your family- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care, Lauran ( support service nurse)
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Hi @Jocelynliu a great big welcome to our forum and it really comes through how caring you are of your father.
I cannot better @LauranBloodCancerUK response to you.
I also have Chronic lymphocytic leukaemia (CLL), and I was diagnosed 20 yrs ago, at the age of 53yr old, and I have been a very lucky girl and always been on watch and wait (active monitoring).or observation period.
As @LauranBloodCancerUK says your fathers medical team take lots of aspects into account when looking at the way forward. We are all such unique complex beings.
Perhaps sit down with your father and write down all his fears, questions, and practicalities for his next appointment.
Please do let us know how you get on.
Really look after yourselves.
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Hello Erica, @Erica
I feel very good when I read your advices, I am 49 years old and two weeks ago I found out that I had Chronic lymphocytic leukaemia (CLL), I have a 9-year-old daughter and I don’t want to die so soon😔, The doctors told me that you are in the watching and waiting phase, but what a scary wait😔, If possible, tell me some food recommendations to stay longer at this stage…
Wishing you the best
Omid
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Hi @omid a great big welcome to our forum.
If you have read some of my posts you will know that I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago and I have always been on ‘watch and wait’ or ‘active monitoring’ as I like to call it now.
I attach the Blood Cancer UK website details on eating well for you.
When I was diagnosed the GP said to me that nothing I could change eating wise would help my Chronic lymphocytic leukaemia (CLL), but today things have changed a bit and I eat more fruit and vegetables and a bit less meat, but that is more for my general health and wellbeing.
But I do have a treat now and again.
Blood cancer and eating well | Blood Cancer UK
If we were to need treatment at some stage research, trials and treatments have come on leaps and bounds recently.
I was in shock for ages after I was diagnosed so be ever so kind to yourself. I think my thoughts and emotions have been on high alert and all over the place ever since I was diagnosed
Do you have any support?
Please do keep posting and be ever so kind to yourself and really look after yourself
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Hi @Erica
Thank you very much for your encouraging answer, I am glad that you fought this disease for twenty years and became a hero for others.
Yes, we Iranians have supportive and kind families, especially my wife who is very worried about me.
Just a few questions…
Is it normal that I have night sweats?
Some of the lymph nodes under the chin are palpable with the fingers, which was like this years ago
I often feel dizzy when I stand up.
Thank you for everything:hibiscus:
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Oh @omid I am so glad that that you have a supportive, kind family.
I always believe in getting all symptoms checked out.
The problem with the symptoms you describe are they could be normal, something or nothing.
Take lots of special care of yourself.
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Hi @omid,
Welcome to our forum, we are so sorry to hear about your diagnosis of Chronic lymphocytic leukaemia (CLL) and hope you are doing okay. We understand that watch and wait can be a daunting time. In case it is useful to read over, we have a page on active monitoring Active monitoring in CLL | Blood Cancer UK
I would echo what Erica has said in terms of eating well and looking after yourself. It is important to be kind to yourself and to aim to include a range of nutrients in your diet.
We would advise that you speak with your healthcare team/provider such as the clinical nurse specialist (CNS) to report any concerns or new symptoms as soon as you can. Your team should also be able to advise you with any recommendations/ answer queries you have, but if it is useful, we can also help navigate this and you can call us on 0808 208 0888.
Best Wishes,
Emma (Support Services Nurse)
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hi @Erica
I hope you are better than ever, I had a question, is night sweat a common symptom in Chronic lymphocytic leukaemia (CLL) patients? Especially for me, who is stage zero. Thank you for your attention and support
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Hi @omid I attach the page from the Blood Cancer UK website on Chronic lymphocytic leukaemia (CLL) symptoms
Symptoms of CLL | Blood Cancer UK
Take lots of care of yourself
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