just seen specialist and have been put on watch and wait

Hi Boa1959 I have been on watch and wait for 15 years now, my CLL was picked purely by a random blood test for something completely different. My doctor did explain to me that as I was well there was no point in giving me any treatment as it wouldn't make any difference to the outcome it's best to wait until I actually need it.

It is scary at first but you do eventually get used to the watching and waiting.

Hi Janet 

Not sure why you think you will have to give up your cat ? Just take a little more care with washing your hands after handling it (and any animals , or humans for that matter !) 

Like another poster said , get the flu jab yearly and try to avoid people who are ill . I also got the pneumonia vaccine when initially diagnosed and repeated after five years . Honestly, please believe me, do not tie yourself up in knots worrying about this until you have to . Hopefully that will be many many years away yet for you ! The way I thought of it was that I could sit and mope and  cry but where would it get me ? And I could be run over by a bus before the CLL gets me

Sure, I get my occasional blue days, 

I was sure I would get 20 years on watch and wait before needing treatment but looks like it was not to be. My counts are 200,000 now and climbing , but I am grateful for the years Ive had and hopeful that I will have many more yet to come . 

Teresa. 

Hi Mike, 

I hope you don't  mind me asking you a question? Do you have to take antibiotics all the time after having your spleen removed ? 

I read that on the internet, I hate taking them so that would be a worry for me if I had to have mine removed. 

Teresa

Unfortunately yes. Its only a maintenance dose as opposed to treatment level. Personally I have had no issues / side effects. 

As for removing the spleen, mine was already very large and giving issues with platelet and hemaglobin levels. Still, they put off removing it. That decision was forced when a careless driver knocked me off my bicycle.

Mike

Thanks for reply Mike. I think mine is enlarged as have discomfort and fullness. Hopefully the chemo will sort it and I wont need it removed (fingers crossed!) How unlucky were you to have that accident! Still its good that you are here to talk about it I guess . 

Teresa 

Hi I was diagnosed in December 3 days before Christmas with SLL and am too on watch and wait.  Mine was found with a routine mammorgram.  I totally get where you are coming from, I feel exactly the same at the moment.  I also have a disease called Arachnoditius which effects all my nerves in my spine and my mobility, which on it's own is a nightmare to live with knowing I will get worse with that, then this comes up.  I have good days where I try to put to back of my mind, and get on with life, then something comes to the forefront of my mind thinking what if! the symptoms to watch out for, why 3 months for check ups, why that long, hasen to add my husband cant geet his head around that bit either, then trying to be strong and positive for your partner and kids.  It really is a head mess for sure.  I have found that keeping busy really helps, and just trying to be positive.  Totally get you, and if you get any tips would be grateful for the share as I will do the same