Leukemia

[Bob Fox]

First of all, I don't see much talk of CLL here. I would like to start a discussion with anyone who has been diagnosed or knows of anyone or just knows about it. I was diagnosed with it about 3 weeks ago. I am an active 53 year old guy who likes to go (ocean fishing, surfing, kayaking and hiking). Currently working for a local utility company doing field work (outdoors). With that said, I am a healthy guy with no simptoms of CLL except for the elevated white blood cell count and (slightly) enlarged spleen. The abnormality in my blood was discovered in a routine blood test for an anual (over 50) check up. From what I was told , I don't like to sit around and "wait & whatch" as the hemotolagist wants me to do. He wants to obtain a blood test monthly for 6 months, then see me! hhhhhmmm. wasn't sure how to take that. I walked out of that visit with my brain numb ! I've since, read about vitamins and suppliments to take to help boost the immune system, people selling kits of vitamines/suppliments for $500 a year that is suppose to work miracles. I've read story's of the goverment holding information about wonder drugs to help blood cancer patients. Yea, my head is spinning!! I'd like to here from you, someone who's been there. I'm trying not to let it get me down, as my normal disposition is an upbeat type of guy! I'm waiting for an "ok" from my primary Dr (I have an HMO) lucky me!!, to see another Dr but out of the same office! hmmmm! not liking that one. So, I'm also trying to get a name of a good Dr here in San Diego and submit it to the Insurance folks to accept. We'll see. Ok, I've ramble enough for a while, your next.........no rush on a reply......I've got 6 months to wait......ha !...........type to ya later.......bob

[kts]

There is a good oncologist in the North LA area, Herb DuVivier MD, good luck

[Mimi5355]

I just posted a question myself, concerning the link between Gout and CLL. I am experiencing a raging case of Gout yet I don't fit into the category of people who typically get Gout. Were you having any joint pains? Do you know of a connection between Gout and CLL?

Thanks

[Bob Fox]

I myself have not had any bouts of gout. I know it is painfull. My wife gets it once and a while.
Sorry I can't be of any more help. Keep asking and digging!! ......take care!.....bob

[biogeo88]

My mother was diagnosed with CLL a few years ago. She is still at zero baseline (I think they call it that) and has not had any big changes in her blood since then. She does go every 6 months and they check her blood counts, etc. just to make sure there are no changes. If you start to get anemic, lymph nodes get large, fatigue or any other abnormalities in that time, call your dr. My aunt has CLL with a T cell factor that makes it more difficult to treat. She is starting her chemo any time due to all the problems listed above. We know of several people with Cll and no t cell involvement and have had chemo (it is actually a very high powered antibiotic) that has knocked their counts down and they have stayed down for a long time.
My question is.... what is the best treatment ( I realize each case is different) for cll with a tcell factor and what are the difficulties in the treatment with the tcell involvement? Where is the best cll treatment hospital? I just want to know more to expect and to help. My aunt has anemia, huge lymph nodes all over, bleeding palate from lymph nodes. she start her treatment in the next week or so. Please pray for her good health and quick recovery.
thank you all,
Lindy

[Bob Fox]

No, I don't have any gout or any joint problems. Sorry! Good luck. Keep asking Q's. Someone out there should be able to help you........take care......bob

[shopgirl]

Hi Bob. I am a 57 year old female and I was diagnosed with CLL about 2 months ago. I, too, am in the "wait and watch" phase as my stage is O. From what I understand, starting treatment in the early stages is not done because the side effects from these treatments will make us feel worse that we do now and will not do anything to the bottom line. I have to have blood tests every three months, but I have the CD38 marker which indicates a more aggressive type. Yippee! I know how you feel about waiting to get sick. It's like being tied to the train track...you can hear the train coming, but don't know how long it will take to get to you, but you know when it does, it is going to cause problems! I have done a lot of research on CLL, and I AM confident that there is a lot of new information being learned and new treatments on the way. I think that it's a great idea to see another doctor...I may do that myself although I had the immunophenotyping test, which is conclusive, so I don't doubt the results. Good luck to you.

Roz

[lindamo]

My bones ache so bad sometime but my doc says that is not a symptom of CLL. 3 over the counter pain killers take care of it so far.
I was diagnosed 3 years ago with a blood count of 38K and it stayed that way until 3 months ago and it is now 50K. I have been advised that chemo starts at around 125K. I do not relish that thought at all. Has anyone taken chemo and what was the outcome? When did you start it? How many treatments? Side affects? Any other advice?
I have seen two docs, 300 miles apart, and they so far have said and done the same.
ALso, I have an obstruction in my colon and while it could be many things, I read on the CLL site that lymphacites can bunch up and cause an obstruction. Has anyone dealt with that issue?

[phyre1]

Hi Bob,
I am 59 years old and have just been diagnosed with CLL (Stage 0 ).Like you i have kept reasonably fit but not as active as yourself and it is very disheartening to be suddenly at the mercy of a progressive disease over which according to my research there is little in the way of therapy but depending what particular white cells are the rogues ,as some are more aggressive than others. Like you and others who have made comment,my Physician has seen fit to put me on the WAIT<WATCH<MONITOR basis even though the Haemotologist suggested further detailed tests eg FISH. Unfortunately i was green in knowledge when i went to his appraisal and did not question his decision on no further tests but i will be raising the issue with my GP on my next visit. In the meantime because i am anti Western medicine and won't even contemplate any form of radiation(if it comes to that)i am pursuing both TCM and Doctors who practice natural healing to see what if anything can be initialised at this early point in my case.
I would suggest that you pursue as many avenues as you can so you can be assured of getting the attention that is required rather than sitting back waiting for perhaps the inevitable to happen but DO NOT contemplate any form of radiation at your early stage as it will more than likely exasperate your condition(Provided you can even find anyone to give you radiation at this early stage).
One just has to get on with life and have a positive mental attitude(i know easier said than done)as with this disease you could go another 20-30 years without any progression, but having said that one could wake up tomorrow with the cells way out of control. It is just one of these diseases that is hard to understand with this ability to just suddenly flare up for no apparent reason and can then go back into recession.
Well i've waffled on long enough.Hopefully something i have said is of some assistance to you.
Best of Luck. I will post again if i get any good news from my approach to TCM and natural therapy docs.
John B