Just arrived!

[Salvoboy]

I was diagnosed with CLL in 2008, at the age of 57. After 2 years of watch-and-wait I was referred to King’s College Hospital in London and had FCminiR chemo (Arctic Trial) over a 9 month period.

I was able to work full time until the end of 2013, and have taught short courses on and off since then.

I have been on an Ibrutinib trial (Icicle) for almost 2 years and am doing quite well on it. I am susceptible to chest infections/pneumonia so I have IVIG infusion every 4 weeks to support my immune system. I am also susceptible to Basal Cell Carcinoma (skin cancer -usually harmless) as a result of sun damage and CLL, which is also treated at King’s.

Although we now live on the edge of South London we have spent much of our working and family life in Denmark Hill, so the hospital has always been a familiar place to me and my family. The staff are invariably supportive and compassionate, and we have a good support network in the immediate area when we need it.

Our ‘coping strategy’ is simple - my wife and I get out and about as much as possible, we are part of a mutually supportive church family, we always have at least one holiday or cruise booked so that we have something to look forward to, and we deal with each infection and hospitalisation as it comes. We always check where the nearest hospital is, and we carry our EHIC vards in case of a medical emergency anywhere in Europe.

My one piece of advice - take part in any trial that comes!

[mrsjsmith]

Hello from another Kings patient and also a south Londoner ! Perhaps we have sat next to each other as I also have IVIG every month.

Agreed the staff are all amazing and so caring.

Are you booked for the London CLLSA November meeting ? If so we must say hello.

Colette

[Mystic75]

Welcome Salvoboy! Thank you for your post and insights. You highlight an important aspect of having CLL - and that is to continue to live your life as much as possible. I'm so glad you have the support you need.

All the best,

D.