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CLL America from Patient Power
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Need to talk & advice, WBC

Hi I just wanted to read your posts they have helped me over the past year cope with my Dad having CLL. I feel for everyone that faces cancer. Yesterday, was Dad's check up and for the first time his WBC was higher than when he had treatment for Lymphoma. He is 70 years old (still so young to me) he was so sad but, his oncology doctor said still no need for treatment. I was wondering if anyone in his she group could talk to me with what they have and how long you have had CLL. I'm concerned about what my Do Dad might need and his age. He was diagnosed in August of 2014 with B cell Lymphoma and CLL. At the same time. I look forward to hearing from anyone that wants to talk. This is very hard to cope with it hurts your heart. I know without God my Dad would not still be here. Thank you.

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Hi, I just read your post about your dad. Based on my experience over the last two years I can say that the white cell count or more accurately the absolute lymphocyte count will go up over time with CLL. By itself the lymphocyte count is not a trigger for treatment unless the rate of increase is large (i.e., the lymphocyte count is above 30,000 and doubles in 6 months or less). Furthermore, a single blood test is not going to cause the start of treatment. The doctor will be looking for trends. The specific aspects of blood tests that can lead to treatment are steadily decreasing hemoglobin that is below 11 (and not explained by something like an iron deficiency) and steadily decreasing platelets that are blow 100. If both cases the doctor will be looking at trends over a number of blood tests. For example, two years ago my lymphocyte count jumped from 52,000 to 89,000 in two weeks. That caused my doctor to schedule weekly blood tests for me. However, within two weeks my lymphocyte count was down to 50,000. Had my white count continued to increase rapidly we might have discussed treatment, as it was it was a just a trigger for more frequent blood tests. Two years later I am still on watch and wait. I would say, don't get worried about the lymphocyte count. It will jump around. Look at trends over time rather than single blood tests. Hope this helps. Todd Dunn

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Thank Todd. You are so kind this really helped me a great deal. I appreciate the time you took to talk with me. I feel all alone with what my Dad has went through as a child you try so hard to be strong. This gives me hope for him thank you so much. I will count you as a forever friend. May God bless you.

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Hi Grace,

I will be happy to suggest some answers for you, but you may want to consider posting your questions on a different HU community that has many more participants and information.

healthunlocked.com/cllsupport

It was originally a UK based group, but now has more USA folks than Brits.

First of all CLL is a B-cell lymphoma- sometimes called SLL Small Lyphomcytic Lymphoma- the names are confusing. There are others like Folicular, Mantle Cell, Marginal Zone, etc. and it is very rare to have 2 at the same time- in some cases the diagnostic "FLOW" test does not give a clear result and doctors need to biopsy a lymph node to sort out whether the patient has CLL/SLL or a different Lymphoma.

I was diagnosed in 2008 with CLL and was treated 4 times - before my 70th birthday last month. Your Dad is young for a CLL patient, as the average age is around 73, and putting CLL patients on Watch & Wait is the standard treatment, so don't feel that your Dad's case is hopeless. See

healthunlocked.com/cllsuppo...

you will need to join the CLLSA group to read that posting.

What I found and later discovered that Mayo Clinic had proven, is that CLL patients live longer and better if they are under the care of a CLL expert- a doctor that sees primarily or exclusively CLL patients and participates in clinical trials for CLL. CLL treatment is different than all the other Lymphomas and cancers, so this is important.

Let us know by posting more questions or send me a private message by clicking my name/icon and then choose "Message" in the white box on the upper right side of the screen.

Len

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