CLL and shingles

I was diagnosed by a GP 4 months ago, still waiting for haematology appointment - another 4 weeks! Thought I was doing well, just carrying on as usual. Then 2 weeks ago I developed what I thought was a crop of midge bites - overnight. Painful not itchy, should have rung a bell when I developed another patch on my back. But I still thought bites, then the pain began to feel like nerve pain and the penny dropped! Seen by a GP today and it is shingles. I had the vaccine some years ago and my spots never became the recognisable blisters. Thinking is that the vaccine prevented that. Still painful though. I guess this is part of a compromised immune system, but I feel hard done by, in that I have not even spoken to the haematology team. Just needed to vent!


Hi @Kas44.
This is definitely the best pace to vent!
I’m sorry to hear you have shingles. It sounds very painful and uncomfortable!
Waiting is really hard isn’t it but so often part of our journey with blood cancer.
Please take the time before your appointment to write down all of your questions. Often the first appointment can be a little overwhelming so if you can, take somebody with you and make them aware of your questions to!
I completely understand your frustration, as lots of us on this forum will. This is a place where you can vent and say how it really is for you.
Please take really good care of yourself and remember, your forum family is always here X

Oh @Kas44 it is good to have a vent sometimes and here is the place.
Now you have been diagnosed I have found there is a lot of waiting around and not knowing.
It is not just with haematology I can tell you from experience. But it does give you the opportunity to write down all the questions you would like to ask.
I also have Chronic lymphocytic leukaemia (CLL) and was diagnosed in 2003, we moved home in 2013 and the stress of moving brought on my shingles.
I believe with a compromised immune system, which most of us have, we should not have live vaccines and about 3 yrs an inert vaccine came available for shingles called Shingrix and it is given in 2 doses approx 2-3 mths apart.
It has helped me, perhaps when you have recovered it might be worth checking with your GP or the practice nurse.
Shingles is nasty so really look after yourself.
Please do keep posting I would like to hear more about you,

1 Like