How will this disease impact my life?

How this disease impacts your life depends on the following:

  • Whether the disease grows so slowly such that no treatment is
    needed;
  • The number of healthy blood cells in the blood and bone marrow;
  • Whether there are symptoms of the disease, such as recurring
    infections;
  • Whether the spleen is so enlarged that it causes symptoms.

If treatment is needed, the impact of HCL on your life depends on:

  • Whether the hairy cell leukemia responds to primary treatment;
  • Whether the leukemia has come back after previous treatment.

The treatment phase for hairy cell leukemia is usually of short duration, ranging from just 5 to 7 daily IV administration of Cladribine for one cycle, or initial bi-weekly, then monthly IV administrations of Pentostatin for a total of some 4 months. Treatment usually results in a long-lasting remission in most (95%) of the patients. If the leukemia returns after it has been in remission, re-treatment often induces another remission.

A majority of patients can expect a disease-free time span of about ten years, or sometimes much longer after initial treatment. If re-treatment is necessary in the future, the drugs are normally effective again, although the average length of remission is somewhat shorter in subsequent treatments.

Most of the patients are relieved to have the challenges of treatment behind them. No matter whether the initial treatment schedule is for 5 to 7 days or consists of weekly to monthly injections for 3 – 4 months, the maximum effect of chemotherapy will be achieved 3 to 4 months after the beginning of chemotherapy. Thereafter you will probably feel well and can expect life to return to “normal”, i.e. to the way before the diagnosis of HCL was made. For some patients, recovery might take much longer. Some patients may not feel “normal” or may not be able to do things they once easily did.

How soon after treatment you can feel “normal” again depends on several factors, including:

  • How advanced the HCL was at the time of treatment;
  • Your health conditions other than HCL;
  • Whether you have achieved a “complete remission” or a partial
    remission after treatment;
  • Whether you have experienced any of the rare, but serious side
    effects such as severe neutropenia, fever and infection, or
    kidney failure during or after treatment;
  • Whether you have experienced unusual distress and psychological
    trauma from the diagnosis.

Given the present success rates of treatment, the life expectancy for patients with HCL is close to that of the general population. In all patients, the first two years after diagnosis have the highest risk for serious or fatal complications. Surviving the first five years probably portends good control of the disease. It seems that after five years’ clinical remission, patients with normal blood counts might have a normal life expectancy.

Many patients report that life after HCL treatment has new meaning. Some have mentioned that the experience of treatment has led them to make important changes. Changes might include the way you eat, the things you do, and your sources of support. Many have reported they have learned how to take better care of themselves and have become more health conscious. Others have benefited from joining support groups and have become actively involved in promoting research in treatment of HCL.

The impact of the disease for patients with the variant form of the disease (HCL-V) is not so easy to answer. This form is extremely seldom and survival is also complicated by the relatively high median age (70 years old) at diagnosis. It seems that HCL-V patients might survive for more than 10 years.

How often will I need to see the doctor after my treatment is completed?

After successful treatment, you should return to see the doctor for regular medical checkups for two reasons:

  • Despite high rates and long durations of remission, the disease
    is considered incurable. Relapses might occur even after more
    /> than twenty years of continuous remission. Patients will require lifelong monitoring. The disease can return even after decades
    of good health.
  • HCL patients might have twice the risk of developing another
    cancer, with a peak of about two years after diagnosis of HCL.
    Thereafter the risk falls steadily. There is also a higher risk
    of developing an autoimmune disease, which may also be brought
    under control upon successful treatment of HCL.

In general, patients with HCL usually return to the doctor every 3 to 4 months during the first 2 years after treatment, and once or twice a year after that. Most specialists recommend a yearly visit to the doctor for the rest of the patient’s life, and getting blood counts twice a year.

At these visits, your doctor will look for side effects from treatment, and check for signs of recurrence.

At these visits, your doctor will:

  • Review your medical history since the last visit
  • Give you a physical exam

Your doctor may run follow-up tests such as:

  • Complete blood counts
  • Lab work such as soluble CD25
  • MRI or CT scans.

Many patients keep their medical records in a folder and refer to them as they see new doctors. It might be useful to keep your own records on:

  • The date you were diagnosed with HCL;
  • Pathology report of the bone marrow or other biopsy material;
  • Place and dates of specific treatment;
  • Names and doses of chemotherapy;
  • Key lab reports, x-ray reports, CT scans, and MRI reports;
  • List of possible short-term and long-term side effects of the
    specific treatment that you have received;
  • Contact information for all health professionals involved in
    your treatment;
  • Any problems that occurred during or after treatment;

For follow-up care, the doctor may be the same who provided your treatment. Depending on where you live, it may make more sense to get follow-up care from your family doctor.

Between regularly scheduled appointments, patients with HCL should report any health problems, especially viral or bacterial infections, and see their attending physician as soon as these problems occur.

Will I be able to return to work?

Treatment of HCL often results in a long-lasting remission. Most patients (>90%) are able to return to work upon successful treatment. Patients usually feel fit enough to return to work once they have achieved normal blood counts, which may happen 2 to 3 months after beginning of chemotherapy.

How soon you can return to work depends on several factors:

  • How advanced the HCL was at the time of treatment;
  • Your health conditions other than HCL;
  • Whether you have experienced any of the rare, but serious side
    effects of chemotherapy such as severe neutropenia, fever,
     infections, or kidney failure.

Many patients have tolerated the treatment so well that they have continued to work during the whole treatment phase, which for hairy cell leukemia is usually of short duration.

Some patients with advanced disease and poor blood counts might not feel well enough to return to work in the first 3 months, or might suffer from infectious complications during the treatment phase. Others might need even longer. The highest risk for serious or fatal complications was observed in the first two years after diagnosis.

Many patients with HCL report that staying active and performing moderate exercise during and after treatment can help them to return to work earlier. Moderate exercise (walking, biking, swimming) for about 30 minutes every day can reduce anxiety, improve self-esteem, and reduce fatigue or nausea. Patients with severe cytopenia (too few healthy blood cells) may need to take special care in exercising. Consult your doctor before you begin any exercise program.