questions

[BlueGillfisherman]

Good Morning Community , I have a couple of questions. My doctor only has me see him twice a year for blood work and them to discuss the results. Is that about the norm?

Also I have been on W&W for two years, what determines when you start getting treatment. I am not in any rush to because my only symptom is fatigue. Being the fact I am retired I can live with that.

thanks for your help

[lankisterguy Volunteer]

Hi BlueGillfisherman,

Typically the more experienced CLL doctors will adjust your frequency of visits to match your level of CLL. If you have been in W&W for 2 years and on a 6 month schedule, your WBC and ALC is likely still below 50k or even below 30k, your neuts, Red Blood count, platelets, hemoglobin and hematocrit are normal and you have no significant symptoms.

Fatigue is very common among CLL patients, and many doctors tend to ignore it until the patient insists that it is affecting their lifestyle.

If your doctor starts seeing your ALC climb faster, and your other blood tests trend downward, or symptoms begin to appear, you will likely get a 3 month schedule, and eventually a monthly schedule for exams and testing.

When to start treatment is a complex decision, best done with a CLL expert doctor's advice.

Here is a link to the iWCLL guidelines- paragraph 4.1 covers when to treat:

bloodjournal.org/content/11...

youtube.com/watch?v=ht8b3QS...(Not working as expected?)

4.1. 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,46 the Cancer and Leukemia Group B,47 the Spanish Group PETHEMA,48 and the Medical Research Council48 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. This result was confirmed by a meta-analysis.49 In one study, treated patients with early-stage disease had an increased frequency of fatal epithelial cancers compared with untreated patients.46 Therefore, the potential benefit, if any, of an early intervention therapy with antileukemia drugs, alone or in combination with monoclonal antibodies, requires further study.

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.

Len

[Spacee in reply to lankisterguy]

Thank you, Thank you, Thank you Len!!! I sort of manage my husbands CLL since I am a nurse. He is mutated but no symptoms and little change in bloodwork since diagnosis about 6 months ago (though looking at labs he seems to have had something going on since 2014). There is a clinical trial starting in the Spring and his doc wants him on it. I had thought NO. He is still working full time at a very busy CPA practice and golfs twice and week. By the way he feels, he cannot even tell he has CLL.

Thank you again!

Spacee (Linda)

[Ricardo39]

I have been diagnosed for a number of years now, continue on W&W since. See consultant twice a year for blood screening and check up. No treatment at the moment even though bloods are deteriorating. No swellings etc therefore no news is good news. By all accounts the longer you are without treatment the better. Fingers crossed for you and everyone else.

Keep the faith as the saying goes, try not to worry and do live life to the full, we only have one shot at it!!

Good luck.

Dick

[BlueGillfisherman in reply to Ricardo39]

Thanks Richard, I had a friend that was diagnosed with lung cancer a couple of years ago ( now deceased ) We used to joke that w had a monkey on our shoulder. I would ask him from time to time how his monkey was doing and he would do the same. It was nice to have someone you could relate to, this site is the same way. we are all in the same boat so to speak.

Have a blessed day and go get em.

[Ricardo39]

That's the attitude to have. Onwards and upwards,our age group gets blamed for many things sadly the majority of people with CLL fall into this group. However younger persons may have the benefit of scientific progress which will defeat this once and for all. Let's hope.