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CLL

sweber
Posts: 3
Joined: May 2003

My dad was diagnosed with CLL having no symptoms,
I'd like to talk to someone with this same type of cancer

Jam
Posts: 6
Joined: May 2003

oops! I wrote to you on the other thread.Sorry Jam

sweber
Posts: 3
Joined: May 2003

I'm sorry, I'm new at this and don't know what you mean about the other thread.

acll
Posts: 1
Joined: May 2003

I have cll and I am only 34 which is rare. Usually cll hits older people and in most cases men(not always) as in my case. I am in stage 4 and went through chemo and rado. If you have any questions feel free to email me

AuthorUnknown
Posts: 1564
Joined: May 2006

How are you doing? How well have you responded to treatment? My sister has stage iv cll and will probably have to start treatment soon. please advise me as to what she is up against?
Thank you

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

As this person may not longer be checking the discussion boards (due to the date it was posted), you may want to contact them through the internal CSN email. You can do this by clicking on the envelope icon next to their original message.

Take care and be well,

Dana
CSN Dana

Jam
Posts: 6
Joined: May 2003

on the first screen,that lists the discussions, "jam 5/2" when you wrote to me there, I replied to you there.Let me know if you don't find it.

mickey341
Posts: 1
Joined: Jun 2003

I am 61 years old (and a dad of 4) and was originally diagnosed with cll 9 years ago. Then
the blood count was only in the high range of normal but recently it has started to rise.
This watch and wait stage is filled with much anxiety. As a result, the best thing you can do with your dad is communicate with him and let him express his fears, if he wants to. Joining the leukemia and lymphoma society to get information is a good thing also. I recently wemt to a support group meeting (suggested by the lls) and unfortunately did not find much solace there only because there was an individual present who dominated the discussion....the mediator let him ramble on. However, that does not mean all support groups are like that. There is also the possibility of
getting a personal contact phone call from the
lls with someone who has been going through cll.
The person I spoke with suggested to put off
chemotherapy as long as possible but was very
hopeful about treatment. (There are many treatments out there) He also suggested going
to a cancer center where the doctor has treated
primarily cll patients or at least has seen many
of them compared to an oncologist who treats
just a few cll patients.
This is my first time on this csn and I hope
you find this somewhat helpful. Believe me, I
am in the same "boat" as your dad and I empathise. I try to distract myself with other
things but end up thinking alot about cll and
my own predicament. But I know I am not alone
and really am in this fight with many other patients and doctors and believe the research
does offer promising hope. As ex-baseball pitcher
Tug McGraw said, "You gotta believe!"

lehrer
Posts: 1
Joined: Sep 2003

My husband was diagnosed with CLL about a month ago during a routine physical. We had heard of leukemia but no particulars. The Dr. indicated he was young (early 50's) to be diagnosed with this, and that there would be no treatment until he had a higher white blood cell count or enlarged spleen, liver, etc. We would like to talk with someone who has had this for a while, and find out if there are lifestyle changes that we should make, or any suggestions for coping better with this diagnosis. Also would like to know how to determine the prognosis of this condition, if there is a special place (Mayo Clinic, etc.) that we should pursue to better understand what we are facing.

Since I'm new to this site, don't know how to email to a broader group, but I'm hoping you can help me with this. Perhaps there is a clinic some of you have had experience with who specializes in CLL. If so, I would like to hear from you.

fmc1966
Posts: 1
Joined: Feb 2014

Hi i was diagnosed with CLL at age 45 which i was tols was very young i was diagnosed after going for some routine blood work, i never knew i had it i was very shocked when i got the diagnosis!!! i am stage 0 see my dr at sloan kettering in NY every 6 months WBC started ot at 12,000 i am currently up to 29,000 but still no treatment...my advice to you all is to get involved with your local chapter of the leukemia society its a very empowering experience since getting involved i have raised about $20,000 to hopefully one day fund a cure stay strong everyone!!! by no means is our diagnosis a Death sentence!!! GOD BLESS AND BE WELL !!

muskyhunter308
Posts: 2
Joined: May 2014

I was diagnosed with CLL 7 months ago at the age of 48.  It was discovered during a routine physical.  It was a complete shock for me as well, I haven't had a chance to adjust to it.  Unfortunently for me my white blood cell count has doubled and I have an enlarged spleeen and lymphnodes are begining to appear on my neck and Groin.  When I was first told about this it was going to be a disease that would move slowly.  I guess not for me. Life is funny isn't it. 

 

Texas State
Posts: 1
Joined: May 2014

57 year old, had this CLL for almost two years. When I first found out about it i was at 14,000 and jumped quickly to 22,000. However i have been holding steady at that rate for about a year. My mom had it and died six years later. However she discovered her's in the later stages. I found mine in stage 0 when I had a physical.  Hope to stay this way 20 years but we will see. Doc, thinks I will die from someting else before it kills me. I have always been in good health and exercise regularly. I thought it would never happen to me but here I am facing the the same thing. Hope I do not have the same fate as my mother. Not a good way to go out. I know because I saw what happened to my mom. Don't have any symptoms yet but the wait and see approach is blowing my mind. Not thinking about it helps but it is hard to do that every day. I don't know which is worse discovering you have it in the early stages or boom you are in stage 3. I guess I should count my blessings considering the other CLL patients that I have read about who are no longer here.

Cole74
Posts: 23
Joined: Feb 2013

I too am recently diagnosed and scared of what may happen, I am told it is a slow growing cancer however, I do wonder given I already have so many health issues including no spleen removed due to hodgkins in 1987 no thyroid due to thyroid ca in 1997. Have so many late effects from the treatments, purhaps CLL is another late effect. However, if I am already immuno compermised to having the speen removed will this aid the growth rate in the CLL? 

 

 

Cole 74

HD 1987 - 88

Thyroid 1997 -98

CL may 2014

muskyhunter308
Posts: 2
Joined: May 2014

I am not a doctor however it makes sense that having your spleen already removed that you would have a harder time fighting infections.

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