Hope everyone is doing ok. Just a query. I had a routine health check at my GP and they have called me in as my lipids are high. When I have looked at results by overall cholesterol is 5.8 3.8 of which is bad cholesterol. I think that’s pretty borderline so was thinking to turn down statins if they offer them as they have well documented side effects. However when I have looked at the relationship between Chronic lymphocytic leukaemia (CLL) (which I have )and high cholesterol apparently the Chronic lymphocytic leukaemia (CLL) cells need energy so they mop up the cholesterol potentially leading to a more aggressive pathway for Chronic lymphocytic leukaemia (CLL) basically speeding up the progress of the disease. So I’m now thinking I may have to take the statins. Has anyone got any experience of this or any insight into it ?
Wow this is far to complicated for me @KayC I have Chronic lymphocytic leukaemia (CLL) and never have my cholesterol checked, ignorance is bliss and all that.
Good questions for your medical team.
Others might be of more help.
Please do let us know how you get on.
Look after yourself
I’m with @Erica and can’t help with this one. Have you discussed it with your team? The @BloodCancerUK_Nurses may be able to help X
What a great question regarding cholesterol and Chronic lymphocytic leukaemia (CLL), certainly complex and not easy for you to make a decision!
I must confess I know very little about cholesterol, so I did a bit of reading and I did find a great article ‘The role of Cholesterol on Chronic lymphocytic leukaemia (CLL) and pathogenesis’, and only published this June. It states high cholesterol can affect the development of cancer, “however, data regarding the role of cholesterol in Chronic lymphocytic leukaemia (CLL) are conflicting”.
One study “suggests that the link between cancer progression and cholesterol is much more complicated than a simple two-factor association, and that other factors, such as the cholesterol requirement for the tissue of cancer origin and dietary habits, may be more critical”.
Some research quoted in the article does mention that risk rates are related to the (Chronic lymphocytic leukaemia (CLL)) genetic mutations of each patient, so as @Nichola75 and @Erica have suggested, it’s certainly worth discussing this question and also your risk factors with your Consultant before deciding on statins.
Please let us know what is suggested for you when you ask, and what you decide to do.
Best wishes, Heidi.
So the upshot of this is that I have been to GP today my cholesterol is 7.8 ! I have a family history of heart disease and the research seems to show that high cholesterol can speed up disease progression of Chronic lymphocytic leukaemia (CLL) so I’m going to take them I’ve never eaten a high fat diet I exercise most days and keep myself fit so bit annoying obviously genetic
Hi @KayC life isn’t fair, is it.
Let’s see how you get on with the medication and please keep us posted.
Look after yourself
Hope the medication does it’s job! X
Thanks everyone I’m sure it will be fine x
Hi, I am a Chronic myelomonocytic leukaemia (CMML) patient not long before my diagnosis of Chronic myelomonocytic leukaemia (CMML) in fact the blood test that highlighted thrombocytopenia my cholesterol was2.2. My GP commented she had never seen a patient with cholesterol reading that low. I am taking atorvastatin at 40 mg and very often wonder why am I taking statins at all. Even before statins my cholesterol reading was 3.8. The only answer from medics I get is they are following nice recommendations. I feel like binning the statins.
Hi @Unclejack I know you feel like binning the statins but perhaps see your GP first and tell them you do not want to continue taking them so they can either give you a medical reason why you should continue taking them, not just NICE guidelines, or they can update your clinical records. At that point the choice is yours. Please do let us know the outcome.
Take care of yourself
Totally agree. I would raise your concerns with your GP first and ask for the rationale for giving you statins given your low cholesterol Check NICE guidelines yourself online so you are armed with the facts
Good idea. I have a blood test next week will endeavour to see GP a few days later when results are available. My next appointment is the 29/9/23 at haemotology. I must admit my GP is excellent if only I had the same confidence in haemotology. I am already getting pretty wound up about the outcome always chaos at haemotology.
Best wishes may we all stay as well as possible
Correction. My next haemotology appointment has been postponed. I suspect industrial action has intervened. The consultants are planning a strike on the day of my appointment. If I said what I feel I would probably be arrested.
Best wishes to all
Oh no @Unclejack I can have a jolly good guess about your feelings, the wait goes on.
Look after yourself and we await your new appointment.
@Erica. Hi Erica. Finally managed to register for the NHS app. Actually got access to my blood tests. My intention was to compare my results pre COVID to post COVID vaccines. Although my records were quite comprehensive for 2022 and 2023 no record of full blood count being carried out in 2017, 2018, 2019 2020 or 2021. I certainly remember my annual routine tests being carried out but I think 2020 was scuppered with lockdowns. I find this quite strange. My GP.keeps advising me to report all my concerns via the yellow card system. I have tried but never seem to make any progress through the system. MPs have also said the yellow card system is overwhelmed and not fit for purpose. Anyway had blood test for gp practice records. Seems stable, some fluctuations but the trend is stable. Next appointment Dec. 29th by telephone. They cancelled previous 2 face to face appointments.
Anyway hope you and all the others are ok. Not seen any posts from the other Chronic myelomonocytic leukaemia (CMML) patients for a long time.
Best wishes @uncle jack.
Where are you Chronic myelomonocytic leukaemia (CMML)’ers, please do respond to our @Unclejack
Be kind to yourself xx
Just received another change to my next clinic appointment. So far Dec1st cancelled, Rearranged appointment Dec 22nd. cancelled. Now the rearranged appointment on Dec.29 cancelled. Next appointment Dec 20th plenty of time for another cancellation!
I obtained a letter sent by haemotology doctor to my GP. QUOTE. Patient at high risk of cell mutation. Keeping him on very careful watch and wait. Seems I’m at high risk of cancellations. Never mind 6 month since diagnosis and I still feel quite well.
Hi there, if it’s any help, I am 76 and I have been on Statins for 20 odd years, and was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2018’
No one has ever brought the connection up, neither my GP or Haematologist.
Al the best Ron
Thanks Ron that’s good to know. Because I am a nurse I research everything to the nth degree which is why I discovered this information but I’m not going to stress about it I’m just taking my statins and getting on with life. Good to hear from you x
Hi @Unclejack yes, I think we are all at high risk of cancellations, no wonder I have such a mound of NHS paperwork!!!