What does it mean to watch and wait?

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Sometimes doctors may feel that the best course of action for a person with CLL is to ‘watch and wait’.

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Stock photo. Posed by model.

In other words, the doctor's behavior is to wait and monitor the progress of the disease with periodic checks at a hematology specialist center. During this time, a doctor will monitor symptoms and take regular blood tests to determine when treatment is needed.  The treatment of chronic lymphocytic leukemia at present uses several drugs with different mechanisms of action and side effects. The term "adhesion" refers to precisely the behavior through which the patient fails to comply with the information provided to him by doctors. In particular, reference is made to doses of medication to be taken, the frequency of administration and the time at which the medication needs to be taken (e.g. in relation to meals or the interval between one dose and the next). Therefore, to be "adherent" is the first step, because a therapy will work.

Not infrequently such "grip" is reduced and this fact is related to various causative factors such as:

  • the long duration of therapy for CLL
  • age and social context to which the patient belongs
  • the help from family / friends
  • the numerous possible concomitant therapies employed
  • the difficulty ingesting the drug
  • fear of side effects
  • the improvement of symptoms linked to leukemia which is followed by a less careful approach to the treatment in place
  • the lack of clear instructions by the specialist about how to behave in case you forget doses
  • the lack of understanding about the status of the disease that affects you
  • the lack of understanding about the drug's mechanism of action

To be able to remain adherent to prescribed therapies, especially to long-term therapies, it is therefore essential to be constantly motivated, having well including those that are the goals of therapy and the benefits that can be achieved. A practical tip to help you to remember to take your medicine is to combine it with an activity carried out as part of the normal everyday daily routine (such as after a meal, or after an action carried out routinely every day). Also setting visual or audible reminders can be a real help.

When following a therapy for CLL, it is essential to the understand the pathology of the patient which has been affected, the prognosis in the long term, the possible risks connected to it and the consequences of a failure to start of treatment. These factors should be assessed together with the possible medical treatment options and, once established, the most appropriate medication; try to understand the mechanism of action and possible and common adverse effects.

Things you should know about therapies:

  • Times when you have to take the medication
  • If you can take with other medicines
  • When you need to stop taking the medicine
  • If you have to take it on a full or empty stomach
  • Where should you store your medication
  • How long it will take
  • What are the side effects and who to contact in the event of side effects
  • What to do when you forget to take a dose or the dosage is not clear
  • Chemotherapy

    There are lots of different types of chemotherapy drugs; they can be taken as tablets or as an injection into a vein, or through a drip. You may have either a single chemotherapy drug or a combination of different drugs given together. If you are having chemotherapy, each treatment is followed by a rest period to give your body time to recover from any side effects. Each phase of treatment and resting is called a cycle and usually lasts for three or four weeks. You may need to go to hospital to receive your chemotherapy treatment.

  • Steroids

    Steroids can be used before and during chemotherapy treatment to control sickness. You may also receive steroids as a treatment for your cancer, as they can help to control the cancer cells. Steroids can be useful as they don’t stop your bone marrow from making red blood cells and platelets, so if you have anemia or low platelets, your doctor may recommend steroids. Your doctor may recommend that you take a steroid treatment while you are having chemotherapy.

    As time progresses, if you are not experiencing symptoms, your doctor may say your cancer is ‘in remission’. Remission means there is no sign or very few signs of cancer on scans or tests and you have no symptoms. In the early stages, a remission can last for years.
    After some time, the cancer may become active again and cause symptoms once more; this is sometimes called a relapse.
    Sometimes, a blood cancer treatment may stop working. This is sometimes known as refractory disease and may happen when:

    • There’s no change after treatment
    • The number of abnormal blood cells increases
    • Your lymph nodes become larger.

    If this happens, your doctor may change your treatment. The treatment offered at each stage depends on various things, including your age, overall health, strength and fitness.

  • Biological therapies

    Biological therapies are treatments that affect the processes within the cancer cell. They work in different ways to:

    • Stop cancer cells from dividing and growing
    • Seek out cancer cells and kill them
    • Encourage the immune system to attack cancer cells

    Biological therapies include immunotherapies, monoclonal antibodies and targeted therapies.

  • Immunotherapies

    Immunotherapies are therapies that use vaccines or bacteria to stimulate the body’s immune system to act against cancer cells. They do not target cancer cells directly.

  • Monoclonal antibodies

    Antibodies are produced by your immune system to help fight infections. There are lots of different types, each attacking a specific cause of infection, such as bacteria or viruses. Monoclonal antibody treatments are multiple, manufactured copies of the same antibody that either stick to and kill specific cancer cells or fight the cancer in other ways:

    • Some kill the cancer cells or stop them from multiplying
    • Others may stick to the outside of abnormal cells and signal to the immune system to destroy them
  • Chemo-immunotherapies

    Sometimes, your doctor may recommend that you have monoclonal antibodies and chemotherapy at the same time. This is known as chemo-immunotherapy.

  • Targeted therapies

    These are drugs that specifically target molecules involved in tumor growth and progression. Unlike chemotherapy, which works on any cells that are growing rapidly, these drugs work on very specific targets or on cancer cells alone:

    • Some of these targeted therapies help to stop cancer cells from dividing and surviving
    • Other targeted therapies helps to stop cancer cells from surviving for longer than they usually should

    Some targeted therapies are taken orally meaning they may be able to be taken at home.

  • Radiotherapy

    As radiotherapy treats a specific area of the body, it is not usually suitable for patients with blood cancers. However, if your lymph nodes or your spleen is enlarged and causing discomfort, your doctor may recommend local radiation treatment to help shrink it. Each session may last a few minutes and is painless.

  • Surgery

    In some cases, your doctor may recommend surgery to remove your spleen if it is enlarged and causing symptoms.

  • Stem cell transplant

    After you have had chemotherapy, you may be given a stem cell transplant via an infusion. The stem cells pass into your bloodstream and travel to your bone marrow, where they start to produce healthy new blood cells. This type of treatment used to be called a bone marrow transplant.

  • Supportive care

    Almost everyone receives 'supportive care'. This means any treatment that makes your main treatment work as well as it can or makes you feel as well as possible while you're being treated. Examples of supportive care include:

    • Treatment to help reduce infections
    • Blood and platelet transfusions to improve anemia
  • Palliative care

    From time to time, you may be treated by members of your ‘palliative care’ team. They are experts in managing your symptoms and improving your quality of life, and can support you and your whole family.

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