This is my first post on this forum. I am a 58 your old man, and I was diagnosed with Chronic lymphocytic leukaemia (CLL) two years ago. I have been asymptomatic, and have been monitored on a “watch and wait” basis, with blood tests every 6 months.
A couple of weeks ago, I became concerned about a mole on my back, and went to see my family doctor. She thinks it is a melanoma and is referring me for tests/treatment - probably surgical removal. Hopefully, it will have been caught in time, and all be well.
As you do when you receive news like this, I have looked on the internet, and found that an extensive study in Rochester, NY found that people with Chronic lymphocytic leukaemia (CLL) have a 600% higher risk of getting melanoma than normal. It further suggested that people with Chronic lymphocytic leukaemia (CLL) should routinely monitor their skin for any symptoms.
I thought it might be helpful for readers of this forum to be aware.
Hi @Essexdan, a great big welcome I am glad you have found us whilst looking on the internet, yes, there is so much information out there on the net.
I am a 70 yr old female and I have CLL and I am also on watch and wait, I was diagnosed 16 yrs ago.
I had skin cancer on my head which was removed in 2016 and has now returned. I have fair skin and blond hair (what is left of it after the op, I now have a bird bath crater on the top of my head). I was also told that my fairness did not help and the fact that in my misspent youth we just went out in the midday sun to burn.
If you are anything like me I worry about every ache and pain and lump and bump that appears so nothing gets past me.
How are you in the current lockdown?
Hello Erica - thanks for your message - I guess we all have to look after ourselves carefully, and keep an eye out for any new symptoms. I have managed to avoid the lockdown by moving a long way from Essex! I am now in Jamaica for a work project, and am crossing my fingers that I will get back home for Christmas! It is interesting how they have managed the pandemic here. The rules are really enforced: masks, sanitising hands, and a complete curfew after 8pm. Breaking the rules could land you with 6 months at hard labour! As a result, Covid levels are much lower than the U.K. As a result I feel safer here. All the best
Welcome to the forum community Daniel! it’s great to have you join us
We hope you’re doing okay where you are? Like you say, there can be variations with the guidance in different countries.
We did want to share with you our booklet on CLL: https://media.bloodcancer.org.uk/documents/Chronic-lymphocytic-leukaemia-CLL-Blood-Cancer-UK-info-booklet.pdf . you may like to have a look on page 61, which talks through the link between CLL and skin cancer.
It’s also very important to say that everyone is different and no two people affected by CLL are exactly the same, and so we’d always really encourage people to talk through their own personal circumstances with their treatment team who have the fuller picture of them and are in a really good position to offer specific advice. This is also especially important to keep in mind when looking at various research studies.
We also really encourage people to keep an eye on our website: https://bloodcancer.org.uk/understanding-blood-cancer/, for the most accurate and up to date information relating to all the different types of blood cancer- and of course as always, any questions- please do feel free to ask on here or drop our Support Services team a phone call or email: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/
Hope you’ve also been able to get support from your workplace and treatment team during this time Daniel?
Good post as I too have recently had a melanoma removed from my back and now have another under my left breast which will be removed next week. I am 56, have CLL and 5 years W&W. I researched to see if there is a correlation and there certainly is a much higher incidence of melanoma with CLL. I agree, everyone should be alert to skin changes and get it checked out asap - I only became aware of my first one 6 weeks into shielding because I had an annoying itch on my back. Take care, Angela
Hi @SpaceAngel, please let us know how you get on next week and take care and stay safe.
Thank Su - especially for sharing the booklet - lots of information, much of it new to me. I am out of the U.K. at the moment, but have been able to get support locally. Will pick this up with the NHS team when I am home around Christmas,
Thanks SpaceAngel - hope all is going well, and take care. Daniel
Hi @Essexdan, I hope your work project is going well, stay safe and we await hearing more from you when you are back in Essex from Jamaica at Christmas.
Hi @Essexdan. Did you manage to get home? How are things with you?