Hi everyone....

I'm new to this site, having been diagnosed with CLL in early May, at 48yo. Shock to the system, as all of you have experienced. I'm fit and healthy, don't smoke, drink very little, no cancer in my family....this wasn't supposed to happen! But now I'm over the shock and dealing with it, staying positive and keeping healthy. No sign of symptoms, except for the following.

I have swollen lymph nodes which have taken hold around my head....on my face beside my ears, under my chin and down my neck behind my ears. Friends say they don't notice, but I do. Always the way! Question is, does anyone have any tips on how to reduce the swelling? I've given Prednisolone a try, for one week, at the advice of my blood doctor, but it didn't do much. I'm seeing a naturopath for some blood cleansing and immune system boosting.

Thanks for your advice...and wishing you all perfect health!

Lucy

Hi Lucy,
I was dx in 2003 and had no symptoms for a number of years. I was advised to watch and wait with regular blood tests keeping an eye on the lymphocyte count. Then, like you my lymph nodes started swelling, mainly in the neck area. I put up with it, often feeling (and looking) a bit like a chipmunk!
I had no success in reducing the nodes with any complementary therapies or with diet. Eventually I started on some oral chemo (chlorambucil) which was later combined with Mabthera. This did reduce the lymphocyte count and had a small reducing impact on the nodes. It didn't last unfortunately and so late last year I had a full 5 month course of FCR which is a chemo based combination of drugs treatment. This certainly dealt with pretty much everything, including the swollen nodes. I look and feel very normal now, and so are my blood counts.
This is my story. For me, this was a good course of treatment. But one caution that I think is appropriate in CLL: it seems that we are all very different in both how we react to the disease and to the treatments, if we need them. There is a lot of information out there, especially via some excellent web sites hosted mainly in the UK and the USA. Some are listed on the Leukaemia Foundation site - look at 'About The Diseases' and click on Further Links and Resources.
Best wishes on your journey,
Piers

Hi Piers - thanks for your reply. It's heartening to hear your positive story. As the 'nodes' are my only symptoms at this stage, I can live with them, and be grateful that they're not that bad. The swelling seems to go up and down.

I will keep researching and follow up on the links you suggested.

Thanks again for your story and stay healthy.

Lucy