CLL Support Association

Treatment or Not

Hi, I would much appreciate your advice on my father's case. My father is 69, and he was diagnosed with CLL last August, he was at Rai Stage I and on W&W as of Dec'16. He came to London to stay with me for a few months and now he went back to China. He had a blood test done in China at end of 2016. Half year later, last week, he had another blood test. We can see that some figures changed and a doctor advised us to start the treatment. But we would like to ask around to see whether he has really reached the treatment point, as some doctors in China tend to favor invasive treatment even it's unnecessary, for the economic reasons. Here, I would like to post some of his blood test results for your reference:

WBC: 38.61(current) vs. 25.64 (6ms ago); Normal range : 3.5-9.5;

RBC: 5.64 (current) vs. 5.76 (6ms ago); Normal range: 4.3-5.8;

HGB: 157 (current) vs. 162 (6ms ago); Normal range:130-175;

PLT: 154 (current) vs. 183 (6ms ago); Normal range: 125-350;

NEUT%: 21.4 (current) vs. 29.5 (6ms ago); Normal range:40-75;

LYMPH% 74.6 (current) vs. 67.1 (6ms ago); Normal range: 20-50;

NEUT#: 8.25 (current) vs. 7.54 (6ms ago); Normal range: 1.8-6.3;

LYMPH#: 28.8 (current) vs. 17.21 (6ms ago); Normal range: 1.1-3.2;

MCV: 81.2 (current) vs. 85.4 (6ms ago); Normal range: 82-100;

Besides the abnormal blood test results, he doesn’t have weight loss or night sweeting. He has 3 enlarged lymph nodes but spleen and liver are not enlarged.

Could you please help us to have a look? Of course we will listen to what doctor says but it’s better to have a second opinion. Hopefully he doesn’t need a chemo type of treatment now.

In addition, if his health condition allows him to come to London next year, I would like to take him to see the specialist. Do you have any recommendation on a good doctor in London?

7 Replies
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Hi Lonelyplan,

There are internationally recognised guidelines for the start of CLL treatment and in honesty, looking at your father's blood results, it's hard to see under what clinical criteria imminent treatment is being recommended in China. They are;

Primary treatment decisions

'Criteria for initiating treatment may vary depending on whether or not the patient is treated in a clinical trial (Table 2). In general practice, newly diagnosed patients with asymptomatic early-stage disease (Rai 0, Binet A) should be monitored without therapy unless they have evidence of disease progression. Studies from the French Cooperative Group on CLL, the Cancer and Leukemia Group B, the Spanish Group PETHEMA, and the Medical Research Council in the United Kingdom in patients with early-stage disease confirm that the use of alkylating agents in patients with early-stage disease does not prolong survival.

Recommendations regarding indications for treatment in CLL

Whereas patients at intermediate (stages I and II) and high risk (stages III and IV) according to the modified Rai classification or at Binet stage B or C usually benefit from the initiation of treatment, some of these patients (in particular Rai intermediate risk or Binet stage B) can be monitored without therapy until they have evidence for progressive or symptomatic disease.

Active disease should be clearly documented for protocol therapy. At least one of the following criteria should be met:

Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia

Massive (ie, at least 6 cm below the left costal margin) or progressive or symptomatic splenomegaly

Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy

Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months. In patients with initial blood lymphocyte counts of less than 30 × 109/L (30 000/μL), LDT should not be used as a single parameter to define a treatment indication. In addition, factors contributing to lymphocytosis or lymphadenopathy other than CLL (eg, infections) should be excluded.

Autoimmune anemia and/or thrombocytopenia that is poorly responsive to corticosteroids or other standard therapy (see section 10.2).

Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs:

Unintentional weight loss of 10% or more within the previous 6 months;

significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities);

fevers higher than 100.5°F or 38.0°C for 2 or more weeks without other evidence of infection; or

night sweats for more than 1 month without evidence of infection.

Hypogammaglobulinemia or monoclonal or oligoclonal paraproteinemia does not by itself constitute a basis for initiating therapy. However, it is recommended to assess the change of these protein abnormalities if patients are treated.

Patients with CLL may present with a markedly elevated leukocyte count; however, the symptoms associated with leukocyte aggregates that develop in patients with acute leukemia rarely occur in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment.'

bloodjournal.org/content/11...

His neutrophil level is elevated but this could be indicative of an acute infection or stress. My neutral were elevated last test due to a bacterial infection.

Without constitutional symptoms and in the absence of above clinical qualification, I really think your father needs a second opinion in the UK. This condition is less well known in Asia and as you say, treatment is often suggested prematurely.

I'll leave it to others to suggest CLL specialists in the London area because it's not my part of the country but there's certainly great pockets of excellence there and you obviously want the best for your dad.

Best wishes,

Newdawn

11 likes
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Thanks a lot! You have provided useful information. We do need to seek for a 2nd opinion. Regarding his neutrophil level, it's very helpful to know that it may be due to a acute infection or stress. He has just taken a long haul flight, probably still with some jet lags and it's very hot(40 C) at home. Maybe these factors are all contributing an elevated level?

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Hi Lonelyplan

I think what Newdawn has suggested is correct. I'm not a specialist but looking at your fathers results the only thing worth looking into would be his elevated neut count which as Newdawn mentioned could be from a possible infection or stress.

I would definitely seek a second opinion from a specialist, I don't know any off hand but I think Cll Canada posted a list the other day so you possible ask him or see if he could forward you the link.

Best wishes

Stuart

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CLL has a starting gate, a bit like a horse race, and it is when the absolute lymphocyte count [ALC] crosses the 30K mark, your Dad is close.

At this point, specialist watch patients for the 'rate of change' in the numbers, usually over 6 months. When the absolute lymphocyte count [ALC] doubles, in that time... then its an indication for treatment and other symptoms are brought into the mix,

I agree with others, that CLL is very rare in Asian countries, so naturally, doctors don't see many cases, and their expertise may not be great.

People with CLL have absolute lymphocyte count [ALC] counts in the 300-400k range, and still do not require treatment, and it could take years for your Dad to get into a treatment zone, all things being equal, and other blood counts remain good, and he feels well.

Here is the doctor's list from CLL SOCIETY website. Please understand it is not complete in any way, simply a starting point. Some doctors are nearing retirement, so patients might be refered to a specialist's collegue.

cllsociety.org/toolbox/cll-...

Distance must make this very difficult...

~chris

3 likes
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Chris, great thanks. Now I understood that the change rate is the key indicator once ALC's threshold is reached. Hopefully, as you said, it will take Years for my dad to get into the treatment zone. Thanks for the link provided. Yes, I will definitely take my dad to see the specialist here in London.

1 like
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In my opinion if one feels ok it is ok to wait. This is just a broad observation.

1 like
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Yes. You are absolutely right. Thanks.!

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