Cll

I have CLL and wonder if there is anyone else that would like to chat about how they are doing with their CLL journey--I am currently on the wait and watch stage but have noticed recently that I have more enlarged nodes in my neck and chin, they seem to be giving me tinges of pain occaisionally. my next appt isn't until May. I pride myself on keeping a positive outlook on this and plan to live my life as I would have before I was diagnosed.

hi there, i too have cll and have been diagnosed for 5yrs now.....my wbc is now 165 and i have an app in 2 weeks time. he thnks ill be starting chemo this time. like you i try to stay positive, but it gets a bit much at times wondering how ill react to chemo......im 55 how old are you.......cheers linterman

Hi to you too!! I am 57 and was diagnosed 2yrs now, my wbc is still really low it's only at 16 but they say it's more important to watch the lymphocytes, I'm not sure where they are at the moment but I'm getting my results soon my next appt is is May I have been told that they caught mine really early, How are you feeling?? I hope you are doing well!!

take care--Kalical

Hi Kalical, I'm new today to this site! I'm 59, diagnosed 6 years ago with CLL; still watch and wait and actually reclassified to Monoclonal B Lymphocytosis, a downgrade per a study at NIH in Bethesda I'm in. I am also a trained First Connection volunteer for the Leukemia / Lymphoma Society. I would suggest you get the bloodwork results from your last visit. Absolute lymphocyte count, lymph %, mutation status and result of a Beta2Microglobulin test are good prognostic indicators. I take alot of well researched supplements such as Green Tea (Mayo Clinic has a trial); Curcumin or Tumeric (M.D.Anderson studying) and many others. My specialty is Complimentary and Alternative Medicine (CAM); when calls come in to the upstate NY/Vt. chapter with interest in this area I get the calls! 2 years and WBC at 16 sounds very good so far. My WBC varies from 13000 to 19000 over the years. Best wishes and get that past bloodwork and any other test results you have. Check out a specific site (if you haven't already) called CLL Topics too.(WBC 13 to 19, not to confuse you!)

Hi there, I too have been on a watch and wait period which lasted for more than 2 years from my initial diagnosis. My white nblood cell count kept rising over the long term my lymph nodes in the groin and kneck enlarged and a scan showed spots in my lungs. as yet they do not know the cause of the spots. Other that those symptoms I felt fine but enev so th especialist decided to start a course of 6 treatments each to last 4 weeks this March. But I had a strong reaction to the first lot of treatment and all my blood levels sufferred, the white ones in particular juzt about zeroed out putting me at gfreat risk of infection. A week in ilsolation with blod transfusions and loads of anti-biotics solves that and after recovery all my blood levels were reported to be normal. I felt great with lots of energy and enthusiasm for life. I would be interested to know how you progress and swop notes occasionally

Hi thanks for the reply. I started my chemo last month and had 3 days at the begining of the month. I really didnt have any probs apart from feeling a bit flat and drained for the first week. I never lost my appitite which was good. Mind you I didnt have the MabThera (Rituximab) the first round. I was due for the second round of chemo nearly 2 weeks ago but my WBC went down to 1.7, from 178, so I have to wait till the levels build up again. Hopefully next week I start again. What was your WBC before you started chemo? I take it you have finished your full 6 rounds of chemo. How are you feeling. Looking back, was your whole chemo experience as bad as you first thought? I was pretty nervious the first time but I think I trained my mind to accecpt whatever. How long was you diagnosed before you started chemo, I was 5 yrs. hope to hear back from you soon.
Cheers Bill
PS......Where are you from, if you dont mind me asking. Im from australia

Originally Posted by linterman1

Hi thanks for the reply. I started my chemo last month and had 3 days at the begining of the month. I really didnt have any probs apart from feeling a bit flat and drained for the first week. I never lost my appitite which was good. Mind you I didnt have the MabThera (Rituximab) the first round. I was due for the second round of chemo nearly 2 weeks ago but my WBC went down to 1.7, from 178, so I have to wait till the levels build up again. Hopefully next week I start again. What was your WBC before you started chemo? I take it you have finished your full 6 rounds of chemo. How are you feeling. Looking back, was your whole chemo experience as bad as you first thought? I was pretty nervious the first time but I think I trained my mind to accecpt whatever. How long was you diagnosed before you started chemo, I was 5 yrs. hope to hear back from you soon.
Cheers Bill
PS......Where are you from, if you dont mind me asking. Im from australia

Hi Bill, I am from Stevenage in the UK. It seems like we are at similar stages but with different rates of progress? My first session of treatment was in MArch this year, following a 2 year watch and wait period. During those 2 years I was shown graphically that the white blood count kept rising but can not remember what the number was. Some months it seemed to go down as well!
Like you after the first 4 week treatment phase my WBC dropped to 0.7 hence I was hospitalized for a week or so. Following a break of 4 weeks I have just started a second course, after the drip treatment I felt fine and went home. But next day I started the tablet part of the treatment, by 11 am I was not feeling very good and then started trembling. I laid down and that got better but soon afterwards my temperature started to rise, after it passed 38 I went into hospital for the night. Now my specialist has reportedly advised me to hold further treatment except for anti-biotic and anti-viral until I see him in 2 weeks time. Today I feel great again.
I wish you good progress and it is good to know someone else with this problem. All the best. Brian

Hi brian, it looks like I start again on next Tuesday, wednesday and thursday. I will keep you informed on how things go. Hope your feeling well
Cheers Bill