Hi,
I have just had a lovely week away with my family in Devon.
This holiday, very unusually, I have burnt whilst in the sun. Normally I would burn on my back and no where else, I used factor 50 and burnt my upper legs, arms and chest.
I was wondering if this was due to Chronic lymphocytic leukaemia (CLL) or could it be another reaction to Long Covid?
Thank you in advance
Hi @Johanna1. I hope the sun burn didn’t ruin your holiday. As for your question, I have copied in the @BloodCancerUK_Nurses for you as they are the experts.
I know I have to be careful on my face where I had my radiotherapy but will wait to see what the nurses say and if anybody else can share their experiences. How have you been keeping? X
Hello there @Johanna1
Really glad to heat that you’ve had a lovely week away in Devon. Sorry that you got sunburnt despite your best efforts. May I ask if you are on any treatment for your Chronic lymphocytic leukaemia (CLL)? Chemotherapy drugs, radiotherapy and some targeted therapies can certainly make the skin more sensitive. If you are not on any treatment then SPF 50 should protect you from burning, where you by the sea by any chance and was it breezy?
Hoping that you are not too uncomfortable with this and take care,
Gemma
Oh @Johanna1 how lovely to get away to Devon with the family for a week.
Sorry to hear about the unusual sunburn despite the Factor 50, I hope it did not spoil your holiday too much.
Isn’t it difficult to attribute symptoms to different conditions, I always get twitchy and feel it is my Chronic lymphocytic leukaemia (CLL).
Perhaps it is neither conditions but a freak combination of weather conditions.
Having been in lockdown for so long I have probably lost any ability to withstand the sun, especially being fair skinned.
Also the sea breeze does exacerbate my skin burning.
I hope that you are not uncomfortable and if you find the answer please let us know.
Be kind to yourself
Thank you Nichola75,
I am keeping ok, although find navigating Chronic lymphocytic leukaemia (CLL) and Long Covid challenging! Never sure which affects what!
Johanna
Hi GemmaBloodCancerUK,
Thank you for your reply. I am not having any treatment and am on watch and wait at the moment.
We were by the sea and I was under the beach tent as well as the SPF! Thankfully it didn’t ruin our holiday and I do now look quite healthy!
I think as a fellow nurse I find it difficult to understand what is now happening to my body. It is also complicated as I have Long Covid, due to a vaccine and so have strange reactions to things from that as well!
Best wishes
Johanna
Thank You Erica,
We did have a lovely holiday and it wasn’t ruined. I am having a read around Long Covid as well as it appears that can affect how you react in the sun!
I may well be hypervigiliant again as it is time again for my blood tests and hospital appointment!
Best wishes
Johanna
It must be difficult navigating both - like you said, it must be hard to know which symptoms are because of the Chronic lymphocytic leukaemia (CLL) or long covid
Hi @Johanna1,
I imagine it is a real challenge to understand all that is happening to you right now, the long COVID aspect must also muddy the water when thinking about symptoms?
Do always know we are here to talk things through if needed.
Take good care,
Gemma
Hi to everyone who has posted regarding the heat….
I was beginning to think it was just me and I was just assigning my new intolerance by mistake to Chronic lymphocytic leukaemia (CLL) Diagnosed last December but told I had probably had it for past 2years… since as I have been getting increasingly intolerant for the last few years before diagnosis I am wondering was it a very early sign unknown by myself??
Have these episodes of intolerance become the night sweats for anyone?
Hello there @LassieRennie
Thank you for posting. Apart from the heat intolerance may I ask how you are doing since you diagnosis of Chronic lymphocytic leukaemia (CLL)? Are you on any treatment or being actively monitored?
It is always good to be aware of your own normal and any symptoms that should be reported to your Haematology team. As you will know that we can all experience very occasionally sweats in the night, especially in the summer. If you experience persistent and drenching night sweats then they should be reported: Symptoms of CLL | Blood Cancer UK
If you would like any support at all, we are here: Blood cancer information and support by phone and email | Blood Cancer UK
Best wishes
Gemma
Hi Gemma
I am just on active monitoring at the moment. However I have reported my symptoms to my clinical team and they have taken more blood samples today.
Additionally I am undergoing urology tests for ongoing UTI ‘s and they are trying to decide if there is any connection…
Hello again,
Good to hear you have reported your symptoms and that your team have taken bloods.
Sorry that you have been experiencing urinary tract infections, that must be exhausting for you. Have the team been taken urine samples from you?
Hoping that you start to feel better soon and get to the source of the problem.
Do keep in touch if you should need us.
Best wishes
Gemma
Thank you Gemma
I am having lots of investigations now for the UTI’s via the Urology Consultant.
Best Wishes
Julie
Keep us posted on how you get on 