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Just been told CLL

Posts: 2
Joined: Aug 2014

I was told this morning I have Chronic Lymphocytic Leukemia.   My white boold count is 13,800 and my doctor told me thst's low.  he's refering me to a blood specialist.    However I'm in shock right now after readying info online and posts here.    I'm 67, four months shy of 68.   Poppycat

Posts: 4
Joined: Aug 2014

I was diagnosed at age 10 years ago at age 43, but had been symptomatic 5 years before that chasing specialists who could tell me why I felt so crappy.  This is a very slow growing cancer.  You will likely not need treatment for years.  The treatment is relatively easy to tolerate.  No hair loss, no stomach upset, just fatigue.  I made my cancer a project and found the best hematology oncologist (clinical and research) I could find and that was Michael Keating at MD Anderson in Houston.  I also made sure my local oncologist would work closely with him.  So technically, I've survived 15 years, I work 60 hours a week and I've never missed a day of work even during treatment.  I've had 4 courses of monoclonal antibodies (rituximab) with variations of a secondary treatment (leukine to boost my good white cells), salumedrol (for inflamation) and they have come out with chimeric therapies that they think will be curative.  You are prone to infection and cancer sucks, but it changed the way I look at life.  Good luck.  You are getting diagnosed at a time when the therapies are breakthrough!

Posts: 1
Joined: Apr 2015

I was diagnosed in 2005 at age 57.  So, it has been 10 years. I am still in 0 stage. But, this visit to my oncologist found my WBC has increased faster than in the past. Before, it would go up 2 or 3 % each time( every three months). But this time it rose 20% in 3 months. This is a concern. I will know in three months if I need to start treatment.  CLL is slow growing. At first you are shocked that you have it. But after visiting your oncologist and seeing others who have more aggressive forms of cancer, it becomes a matter of thanking goodness that you only have CLL.  I think I went through that process. Now I am on to the next step of being treated (possibly).  I think the key is a positive attitude and trying to enjoy every day you are healthy. I know I have more thoughts of how lucky it is to be alive now. I am not certain I had that before I was diagnosed. I feel fine and have no sypmtoms other than my counts.That is a blessing. I wish you well and hope you come to grips with the diagnosis. Best of luck to you.

Posts: 1
Joined: Apr 2015

Yep, friday the 13th..one month ago I was diagnosed with CLL.  Had a CBC during a physical 4 months ago, with a 9.8 white count and elevated lymphs.  Repeated three months later, with white count iat 11.0 and lymps increased from 58 to 69%.  Repeated one month later by Oncologist and wbc was 10.3 and lymphocytes were 67%.  The Oncologist ran Flowcytometer and FISH test..  He did not discuss in detail the results of these tests, but did say that I was diagnosed at a very early stage and that genetic test indicates the progression is slower than normal.  However, he also commented that CLL can have a mind of its own.  I will return in four months.  In the great scheme of things, there are a lot of things in this planet that could be a hellava lot worse.  Thanks for listening and would appreciate any comments.  


Jgr3617's picture
Posts: 1
Joined: Apr 2015

Hello,,got diagnosed 2 weeks ago.. Kinda scared as I don't know much about the disease or anyone that has it..I am 54 years old

Dr told me to come back for a repeat blood test in aug...

just wanted to share this...just joined this website today..

rixcafeamericain's picture
Posts: 1
Joined: May 2015

I am new to this forum.  Was diagnosed about 4 years ago.  My counts started at 9K and staid that way for the first two years.  Saw my Oncologist every six months.  At one point he said if my numbers remained that stable we would go to once a year.  Of course on my next visit my white cell counts jumped to around 20K and have continued to climb.  My count is now about 40K.  I was sick with chest congestion sore throat etc and when they ckecked my blood my count was over 49K with red cells below normal.  I suspect we are getting ready to start treatments.  My oncologist has ordered a FISH test (Chromosome) to see which treatment would be best for me.  Anthem Blue Cross Blue Shield has informed me that they will not cover the test as they feel it is investigatory and not medically necessary.  As I am sure you have already heard this a very slow acting cancer and mostly you watch and wait.  Don't be frightened you will find that there are many wonderful supportive people who will support you when you feel not so good or are just down in general.  Find yourself a good team and you will be fine. 

Posts: 5
Joined: Jun 2015

My husband was diagnosed in 2009 and had his first Chemo with the same drugs you stated in your post (treatment was June 16 & 17) his white cells were 145,000 and dropped to 8500. He had no nausea or vomiting but that is because they gave him meds for that in IV. His blood pressure dropped to 91/59 and the internist adjusted his blood pressure meds to help that. He had some headaches with sensitivity to light and noise,dizziness and light headed ( I think due to blood pressure to low) along with some irritability, just plain old wore out feeling and slept a lot. I kept close watch on him and made sure he ate a lot of protien (Boost High Protein) lots of fluids and Smart Water (brand name) because it has electrolights in it. These symptoms started abou the 2-3 day after treatment. Now he is fine except for still slight headaches that he has learned to live with and I think that it still has to do with blood pressure so we keep a close eye on it. You don't want your dad to get dehydrated and our chemo nurse said eat something every 2 hours especially protein. A steroid was given with treatment also. His lymph nodes were very large along with very high white cells plus a genetic blue print of his white cells showed missing chromosone 11q22.3>>>>so because of nodes, high white cell and blood blueprint, the doctor said now is the time to start treatment. Thank goodness his platelets did not drop below 100 and red cells not affected. I am hoping the next treatment in July won't be such a shock to his system. He is scheduled for treatments once a month for 6 monts ending in November. That is unless doctor changes treatment. I hope this info has given you some help to try and understand, but if you have any other questions you can let me know. Good luck. The doctor said that you never get rid of CLL but you can go into remission and it could take another 5-7 years or more for it to get to the same point that it was now. Hubbys bone marow was not even mentioned but I guess the CAT Scans he had and all the blood word did not show a problem with the bone marrow.

I assume yor dad is seeing a hemotologist/onocologist in North Carolina and that is who diagnosed him? Did they send his blood to a special lab to have the white cells examined? That is how they found my husbands ( in Georgia) and reconfirmed when we came back to Florida and his doctor is connected with University of Miami and so is his internist. Not that really matters but you really have to have faith and trust in your doctors. My name is Dolly and if you would like to email me directly at any time my email is dollyt2@gmail.com.

I am using this response to anyone that is wondering about this issue so diregard anything in it that doesn't apply to you. Thanks.

Zappymom12's picture
Posts: 8
Joined: Oct 2015

My husband has 11 q deletion and is positive for CD5, CD19, (dim) CD20, (dim) CD22, (partial) CD23, CD200 (dim),

Surface LAMBDA light chains, 30% positive for CD38.  I want the truth.  I've had a Dad die of Stage IV Colon cancer.  I cry everyday but, I am a staight forward no nonsence give the the truth 

kinda person.  Please help me understand this list.

Highlander56's picture
Posts: 16
Joined: Aug 2012

I know every case is unique. However, perhaps you may be encouraged to know I've been in remission from CLL since 1996.

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