Hi all,i was diagnosed with LGL leukemia a few months ago. It is a chronic leukemia similar to cml. I have since bad 3 nights where i have bad 1 alcoholic drink,literally 1,and each night i have been shaking,tingling all over and insomnia. Has anyone ever experienced this? I am not on any medication yet.
When I was diagnosed with Myelodysplastic syndrome (MDS)
I was told by my doctor not to have any alcohol, to which ive not but sure miss it😂this is maybe why, with the symtoms youve just experienced.
I would speak your Dr about it though.
Hi @Nelle4 a great big welcome and this is a great new question.
I have had Chronic lymphocytic leukaemia (CLL) for 19 yrs and was never a big drinker but I am sure I had the very occasional shandy early on.
Then I just decided to give up all together.
When I was first diagnosed, and I know thinking changes, but my GP said the good news is that diet does not make any difference.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses in case they can comment.
But I think @Alan-duffy has given you the best advice to ask your GP, CNS (Clinical Nurse Specialist) or consultant.
Please let us know how you get on and look after yourself those symptoms sound scary.
I was diagnosed with LGL about six years ago, I understand it is quite rare? I am fortunately still on watch and wait (or watch & worry!). I don’t drink very often the odd glass of wine but not had any reaction. I do worry about any changes in my body or any minor illness that it is connected to my LGL.
I found it all very scary when I was first diagnosed- it does seem to get easier until my next blood test review - I go into panic mode again.
Sorry I can’t relate to your reaction to having a drink but this forum is great and I am sure you will get lots of help P
Hi @Nelle4 so sorry to hear you’ve had these bad nights! How have you been the last few days? We’d really encourage you to talk this through with a member of your clinical team such as your clinical nurse specialist or key worker and be sure to mention all of the symptoms you experienced/are experiencing. Do you have their contact details?
I have Chronic lymphocytic leukaemia (CLL) with P17 deletion I have been on a global clinical trial for almost 2 years.
With regard to alcohol I was advised by my haemotologist that alcohol in moderation and in particular red wine because of the antioxidants was good for Chronic lymphocytic leukaemia (CLL).
I regularly have one or two glasses of Shiraz each night and had no problems.
I guess our metabolisms are all different.
During treatment I was advised not to drink by some and others saying just enjoy yourself but don’t go ott. I enjoyed a drink when I was at home, usually a couple of glasses of red wine. Probably needed it after weeks In hospital!
Weird thing is after my transplant, I’m totally not bothered about having a drink and don’t drink during the week now, at weekends it’s very small amounts. My sleep has improved significantly since my transplant but I don’t think that is just down to not drinking as much as I have improved lots of other aspects of my life.
Hope your sleep improves
Hi @Nelle4 How are you doing now?
Look after yourself