Hi All. Was just wondering whether anyone else on watch and wait had experienced tiny red pin prick spots appear on their skin with Chronic lymphocytic leukaemia (CLL). I was diagnosed last September at 44 and was wondering if I should see my GP about this. I have routine blood tests on Wednesday but concerned at this as did the silly thing and consulted Dr Google who said it could be a sign the Chronic lymphocytic leukaemia (CLL) is worsening x
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Oh @Pickle23 perhaps best to divorce Dr Google.
Great timing that you have your routine blood tests on Wednesday and perhaps when the results come back see your GP then.
I have Chronic lymphocytic leukaemia (CLL) and I am on watch and wait and I do have those on my lower legs in the summer when I walk too much in the really hot weather and they come and go occasionally and they are just a heat rash.
Please do let us know how you get on and really look after yourself.
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Thanks for replying. My spots don’t fade unfortunately, I will make an appointment with my GP I think. Just feeling a bit under the weather and not feeling right. Worried something is going on x
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Hi Pickle 23,
My situation started with red spots on legs. Initially referred to dermatology they diagnosed skin cancer!. I insisted on a biopsy which showed it was spots of blood. (Thrombocytopenia) this was in May 22. Previously blood tests were abnormal but then returned to normal. Anyway referred to HAEMOTOLOGY last October with abnormal blood tests again.Wasn’t diagnosed until May 23 after a bone marrow biopsy. It was decided to take me off blood thinners due to low platelets last April. Within a couple of weeks all thrombocytopenia had disappeared for the time being. My Chronic myelomonocytic leukaemia (CMML) is stable at the moment and quite honestly I feel great. Platelets are low but other cells are quite reasonable. Seems Chronic myelomonocytic leukaemia (CMML) is quite rare and I think it’s good to know how others are coping with the diagnosis. I have received tremendous support from all the others who post and blood cancer uk. Keep positive.
Best wishes
Unclejack.
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Hi @Pickle23
I get them too, but dont have Chronic lymphocytic leukaemia (CLL) Like @Erica tends to be in warm weather, just above the ankle. Saw a nurse last time and she diagnosed urticaria!
Best wishes
Helen
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I have several of these tiny spots mainly on my torso, to be honest I don’t worry about them, they seem insignificant compared to other symptoms.
Hi Pickle23, I know your post was in 2023, but I wondered how you are getting on with the skin rash? I have the same thing and it’s spread all over my body. I had 2 biopsies in November 2024 and the consultant said telangiectasia, looks noting like a spider. I was referred to a different hospital for possible laser on one site of my body. Finally got the appointment Feb 2025 told no it’s not telangiectasia, you need another biopsy. I was also diagnosed in July 2024 with t cell granular lymphocytic leukaemia which has caused a megaloblastic anaemia. They then found a brain tumour in my left posterior leaf (no biopsy as in the balance quarter) told a meningioma and will scan me yearly (it’s not changed in dec24-25). I’m on watch and wait for the tumour and leukaemia (no treatment as not cancerous). Having search Google I would say the rash looks like petiechiae. The new Dermatologist is looking into pigmented ourpuric dermatosis, Google tells me this is larger pin prinks than petiechiae but we will wait on the biopsy. This rash resembles blood pink pricks and never goes or fades. It has spread all over my body
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Hello there @Lucylou, welcome to the forum. I’m really sorry to read of all the health concerns you’ve been dealing with and especially finding out you have a brain tumour and Large granular lymphocytic leukaemia (LGLL).
It’s great that you found us and I see you’re reaching out to others. Since my own diagnosis with a different blood cancer in 2023 I’ve found the forum really supportive, I hope you will too.
Perhaps you’d like to read the great Blood Cancer UK information about Large granular lymphocytic leukaemia (LGLL) if you haven’t already: Large granular lymphocytic leukaemia (LGLL) | Blood Cancer UK
While I live with Polycythaemia vera (PV), a different chronic type of blood cancer to Large granular lymphocytic leukaemia (LGLL) that is treated with mild chemotherapy, aspirin and occasional phlebotomy, I also started noticing petiechiae after diagnosis. Last year a brain tumour was found too, although thankfully it’s benign and now shrinking from treatment. I can empathise with much of what you’ve shared and really feel for you.
My haematologist and family doctor have said not to worry about the petiechiae I have, and to be honest I was more concerned with coming to terms with the other diagnoses, but I can appreciate that having them can feel and maybe even look worrying. I’m sorry to read you have them all over your body, hopefully they turn out to be totally benign.
I’d be really interested to know what your specialists say about any potential treatment for the petiechiae, although I’d warn against googling health concerns as search results are notoriously generalistic and often inaccurate. Maybe stick to searching what doctors have confirmed for now, from official healthcare sources like the NHS.
As we can’t offer medical advice around the forum, perhaps you would like to speak with the specialist Blood Cancer UK nurses? They really know their stuff and can be called on 0808 2080 888.
You’ve already found people with shared experiences on the forum. If you’d like to use the search box at the top or Related Topics at the bottom I’m sure you’ll find others @Lucylou.
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Thank you Duncan for the reply and information. I stumbled onto the forum. I’ve had no support from my GP, other than to try and put me on anti depressants. I’m not depressed, I need information and a clear diagnosis especially with my skin. My Haematology team know that I have a clear understanding of everything they have diagnosed, however as they keep telling me I am correct in what I understand and know. But I am not a typical case, something I am sure we all hear.
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That sounds really tough @Lucylou, especially as you’re being so proactive in seeking answers from your GP.
Don’t know if you’ve heard of NHS PALS but they can help liaise between you and your GP and haematology team: What is PALS (Patient Advice and Liaison Service)? - NHS and in NHS PASS in Scotland: How we can help you - PASS | Patient Advice and Support Service
Something I only recently heard of thanks to dear @Ceri_BloodCancerUK is Jess’ Rule, whereby the NHS England needs to act upon someone’s clinical needs if we’ve sought a diagnosis for repeating symptoms over 3 or more appointments: NHS England » Jess’s Rule: Three strikes and we rethink
And you know, something I’m realising from living with a few conditions at the same time is they can overlap and exacerbate symptoms, like the nasty fatigue I’ve experienced. Stress alone can be exhausting, as perhaps you know only too well!
Thinking of you @Lucylou, do consider looking further around the forum for others who might share more pertinent information, and please will you keep us posted about how you get on.
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