Community

Hello, I was diagnosed two years ago with Cll and am hoping to start a support group for people living with Cll. Just wondering if there are any others with Cll interested in getting involved. Be bold and drop me a line.

We have established an advocacy group for Chronic Lymphocytic Leukaemia (CLL) patients and carers. Thanks in part to the help provided by the Irish Cancer Society, on 29 April we held the first ever Public Information Day specifically for CLL patients and carers. We were overwhelmed with the support shown and the attendance on the day, with almost 140 patients and carers present! We are trying to reach out to the CLL community nationwide. Make sure you check out our website www.clli.ie, and Follow us on Facebook (www.facebook.com/cllire) and Twitter (https://twitter.com/CllIreland).

My partner is just finished his second round of chemo and has gained 2 stone in a week from fluid. His body is swollen, feet, ankles face, and he is so uncomfortable but no hair loss, other side effects are lack of taste. How long before he loses this excess weight.?

I have recently had a bone marrow transplant 8 months ago after being diagnosed with luekemia only 15 months ago. I am willing to just answer any questions that anyone may have regarding either.

Hi,new to this. Has anyone else on the site got chronic myeloid lukaemia? Would love to hear.

Hi, my name is Aoife and I was diagnosed with APML on August 15th 2010. It's a pretty rare form of leukaemia (a subset of AML) so if anyone has any questions I can answer or help with just let me know. I've been through 4 doses of chemo on Burkitt's Ward in St. James' and am about to move into the maintenance programme as an out patient. I was on the Spanish Protocol, a new version of which (LPA2005) was published in June of last year. I'm 32, irish and I've tolerated things well so far, thankfully, and have been in molecular remission since the first (induction) round. anyway, I know only a handful of folk get this each year so first hand info can be thin on the ground (I certainly found it to be) so if you, or a relative/friend have been diagnosed and you have queries or want to share experiences I reckon this might be a good place to do it. I've written a couple of blogs about my experience too, which you can read [url=http://stranded.ie/category/leukaemia-2:1h5d65ah]here>[/url:1h5d65ah]

Hi, has anyone experience of this type of cancer? My Mother is 85 and diagnosed 4 months ago. She has had repeated infections and one round of chemo(14 days) with very bad re-action. Docs have now stopped steroids (40mg a day) .She is sleeping about 20 hours a day and still they say she is doing well.No plans for further chemo. We are deeply worried but feel we are not getting enough info. Before this she was 100% brain perfect but now quite confused.Can anyone offer any info?

Hello Wondering if there is anybody out there who has been diagnosed with Hairy Cell Leumkemia? I've just been diagnosed, and will start treatment soon - so keen if there are others out there? It's a pretty ununusual cancer - informal stats show a lot less that 10 people in Ireland diagnosed each year. Up to this point - I have found this dedicated HCL forum pretty useful http://www.network54.com/Forum/263810/ Kevin

Hi, I was wondering if there was anyone on the site who has Non Hodgkins Lymphoma - it doesn't seem to have made it to the list of topics. I was diagnosed in early July after spending 9 weeks in hospital undergoing tests. I still can't understand why it took so long to find out what it was. Before that I had been visiting my GP with various unrelated pains and aches and fatigue which in hindsight pointed to the disease but didn't seem connected at the time. I wonder if this is a common problem or was I just unlucky. I have stage IV non Hodgkins follicular centre cell lymphoma which is also in the bone marrow. I am getting 8 cycles of R Chop and 6 cycles of chemo into the spine. I have just completed cycle 5 and am feeling well now. I spent a total of four and a half months in hospital as I got bacterial infections. I am home for 5 weeks now and it is heaven. I wonder does anyone know anything about 'centre cell' as all the literature mentions B cell and Tcell but never centre cell. Would love to talk someone.

Was recently diagnosed with this form of leukemia does anyone have any info on it?