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What is Acute Myeloid Leukemia?

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Introduction to Acute Myeloid Leukemia

If you have been diagnosed with Acute Myeloid Leukemia, or someone close to your heart has been, you may be understandably concerned or fretful. Regardless of the type or where it appears in the body, cancer is one of the greatest causes of concern.

Cancer is the accumulation of abnormally proliferating cells that form an abnormally growing mass called a tumor. The cancer cells in a tumor grow and divide rapidly and are no more under regulation by the normal signaling mechanism.

Typically, cancer may be either benign or malignant. Benign cancer cells remain confined to the area of origin (such as a skin wart). Malignant cancer means the unregulated cells invade the surrounding structures and eventually spread throughout the body via the circulatory or lymphatic system. Eventually, malignant cancer compresses vital structures and compromises their functions.

What is Acute Myeloid Leukemia?

Acute Myeloid Leukemia (AML) is a cancer of the blood and bone marrow, as suggested by the term Leukemia. Bone marrow is the spongy tissue within the bone where blood cells are produced.

In this cancer, too many immature white blood cells form and interfere with normal blood cells. AML affects myeloid cells, a group of blood-forming progenitor cells that mature into various blood cells such as Erythrocytes (red blood cells that supply oxygen, the platelets that clot blood after an injury), Monocytes, Basophils, Macrophages, and more.

AML is a malignant blood cancer. It is referred to as “acute” because the condition progresses rapidly.

You might hear your doctor refer your condition with names other than AML. Don’t get confused if your healthcare practitioner refers to it with the following names—all secondary terms for the same condition, Acute Myeloid Leukemia:

  • Acute myelogenous leukemia
  • Acute myelocytic leukemia
  • Acute granulocytic leukemia
  • Acute non-lymphocytic leukemia

The 5-year survival rate of AML is approximately 24% for people over 20 and about 10-15% in patients age 60 years and above. For people younger than 20, the 5-year survival rate is about 67%. Once diagnosed with AML, seek treatment as soon as possible because this is a rapidly deteriorating condition that spreads quickly to other parts of the body such as:

  • Spleen
  • Lymph nodes
  • Liver
  • Brain and spinal cord
  • Testicles

Now that you’ve understood what AML is, let’s talk about what causes AML, the symptoms associated with it, its treatment and post-treatment effects.

Causes and risk factors of AML

The exact reason why someone develops AML is not completely understood. However, researchers claim certain risk factors predispose a person to the condition, including:

  • Increasing age
  • Gender (males are susceptible to developing AML than females)
  • Exposure to toxins such as tobacco smoke
  • Exposure to certain chemicals like benzene (a solvent present in industrial emissions and petroleum refinery waste), detergents, pesticides, etc.
  • Exposure to Ionizing radiation
  • History of autoimmune disease (e.g., Psoriasis, Rheumatoid Arthritis, Autoimmune Hemolytic Anemia, Aplastic Anemia, etc.)
  • Medications of autoimmune disease (e.g., corticosteroids, anti-inflammatory agents, and immunosuppressive agents)
  • Chemotherapy for the treatment of other malignancies
  • Pre-existing disease or syndrome (e.g., Down’s Syndrome)
  • Infections (tuberculosis, pneumonia, intestinal infections, septicemia, hepatitis C, etc.)
  • Underlying genetic predisposition (e.g., family history of AML)

Signs and symptoms of Acute Myeloid Leukemia

The World Health Organization (WHO) classifies and categorizes AML and its symptoms into different groups based on the affected cell type and the causative factors. Early symptoms are generally flu-like and include:

  • Fatigue
  • Anemia
  • Anorexia
  • Fever
  • Lost appetite
  • Weight loss
  • Sweating at night

AML can involve the red blood cell line and may have the following additional symptoms:

  • Dizziness
  • Weakness
  • Pale skin
  • Irregular heartbeat
  • Cold peripheries
  • Shortness of breath
  • Headache

If you have the type of AML that affects the white blood cells, you will be vulnerable to serious infections that take a long time to treat. The following symptoms will be noted:

  • Fever
  • Weakness
  • Muscle aches
  • Diarrhea

Having AML with malfunctioning platelets leads to inappropriate blood clotting with the following symptoms:

  • Easy bruising
  • Bleeding gums
  • Bleeding that is hard to impede
  • Small red spots under your skin caused by bleeding
  • Nose bleeding
  • Sores that are difficult to heal

Invading leukemia spreads to other body parts, impairing their function too. The symptoms of AML in later stages are:

  • Balance issues
  • Blurring of vision
  • Bone or joint pain
  • Numbness in your face
  • Seizures
  • Spots or a rash on your skin
  • Swelling in your belly
  • Bleeding gums
  • Swollen glands in your groin, underarms, neck or superior to your collarbone

If you have any of the symptoms above, set an appointment with your healthcare professional as soon as possible. You might be suffering only from influenza or some other minor condition, but you should always rule out serious causes of concern. Explain your symptoms to your doctor who will take all the necessary steps to screen you for AML.

Diagnosis of AML

Your doctor may recommend specific tests to screen you for AML, as follows.

1.   Blood tests

Patients with AML have increased numbers of white blood cells (WBCs) and reduced numbers of red blood cells (RBCs) and platelets. Immature cells called blast cells (myeloblasts) that are normally present in bone marrow but not in blood are also detected.

2.   Bone marrow test

For the confirmation of diagnosis, your doctor will recommend a bone marrow test. In this biopsy a sample is taken from your marrow using a needle (commonly from the hipbone) and sent to a lab for testing.

3.   Other tests

Other tests such as the lumbar puncture (spinal tap) and genomic testing might also be required. The WHO classification of AML guides diagnosis and directs the treatment plan.

If your doctor confirms that you have AML, you may need to undergo further tests to determine its subtype and the extent of the spread of cancer in your body. The subtype of AML is established by examining the appearance of your cells under a microscope. Another special laboratory test may also be needed to identify the characteristics of your cells. Determination of your AML subtype directs the doctor for the type of treatment you will need.

Treatment plan for AML

The treatment of AML depends upon factors like your age, overall health status, the subtype of AML and your tolerance status. Although AML was previously an incurable condition, it is now cured in 35-40% of patients who are younger than 60 years of age. For the elderly, the prognosis is still evolving with time. The treatment is pursued in two phases.

1.   Induction therapy

In the first phase, the leukemic cells in the blood and bone marrow are targeted. The aim of this phase is to achieve complete remission (CR) of cancer cells. Intensive treatment is given using an anthracycline and cytarabine regimen. Daunorubicin or Idarubicin is given at a typical dose of 60-90mg/m2 and 10-12 mg/m2 respectively on days 1, 2 and 3 of the treatment along with a cytarabine infusion (100 mg/m2/daily for seven days (days 1 to 7). However, your oncologist will determine the exact dose needed for you.

Remission Induction Therapy, on the other hand, does not eliminate all the cancerous cells altogether. This makes further treatment imperative to prevent a relapse of the condition. It has been found that in 65%–73% of young patients complete remission is achieved with this standard induction therapy while 38%–62% of patients over 60 years achieve CR. Patients having a mutation in FLT3 are treated with FLT3 inhibitor midostaurin along with the standard induction therapy.

In elderly patients, hypomethylating agents including decitabine and azacitidine are found to be beneficial as initial induction therapy and for relapse. Two to four cycles of this therapy are needed on an average to achieve an optimal response.

Patients who are suspected of acute promyelocytic leukemia (APL) are to be treated with all-trans retinoic acid (ATRA) even before confirmation of the diagnosis. This will prevent the development of coagulopathy and disseminated intravascular coagulation (DIC) induced by APL. The outcomes of complete remission are even better if arsenic (ATO) is used in combination. Chemotherapy should also be started as soon as the diagnosis is confirmed.

During this phase, the levels of WBC and fibrinogen, prothrombin time and partial thromboplastin time should be monitored at least twice a day, supported by aggressive transfusion if needed. In patients having a high WBC count, steroids should be given prophylactically particularly when ATRA-ATO combination therapy is being used to prevent differentiation syndrome.

2.   Post-Induction therapy

The second phase is called post-induction therapy, consolidation therapy, maintenance therapy or intensification. It aims to get rid of the remaining cancerous cells of AML and is critical to prevent a recurrence.

In general, two main approaches to consolidation therapy exist:

  1. ChemotherapyChemotherapy is used in both the phases of AML treatment. Medicines are used to kill cancer cells. In this process, normal blood cells are also destroyed so a hospital stay is crucial for close observation and management of the patient.For patients younger than 60 years, four cycles of intermediate-dose of cytarabine is given at 1.5 g/m2 two times a day, on days 1, 3 and 5. This will effectively prolong remission and improve survival. However, transplantation is only reserved for a relapse.For patients more than 60 years, the standard dose of cytarabine used is 500–1000 mg/m2.
  2. Hematopoietic stem cell transplantation (bone marrow transplantation)A bone marrow transplant is typically done for particularly fit patients with intermediate to high-risk disease after complete remission. This remains the most effective long-term treatment for those who successfully get cured in the first round. Transplantation is considered for patients who:- Do not have any other co-morbidities
    – Have successfully achieved complete remission
    – Have a suitable donor available

The oncologist decides whether to opt for consolidation therapy or transplant, a decision largely individualized to each patient. Consolidation itself poses a risk of mortality or morbidity. A reduced-intensity allogeneic hematopoietic stem cell transplant may be considered for patients who are ineligible for a myeloablative transplant. This strategy has been found effective in older eligible patients and is becoming more common and clinically more accepted.

Relapse

Relapse occurs when major or minor remnants of leukemic cells expand that were present at the time of diagnosis or through newly developed mutations over time. Early relapse (within six months of the first complete remission), has a poor survival rate.

The prognosis is better for a second complete remission with late relapse, for those at a young age and in those with favorable genetics. A relapse therapy called salvage chemotherapy is done using Cytarabine, Fludarabine, Idarubicin as well as an MEC combination (including Mitoxantrone, Etoposide, and Cytarabine). For APL, the standard re-induction therapy includes the use of arsenic with or without ATRA.

What side effects should you expect?

Chemotherapeutic drugs work by killing rapidly dividing cells in your body. Unfortunately, these drugs also affect and destroy normal healthy cells. This affects the normal functioning of every organ in the body. The expected side effects are as follows:

  • Nausea and vomiting
  • Fatigue
  • Diarrhea and constipation
  • Hair loss
  • Mouth sores
  • Loss of appetite
  • Easy bruising
  • Increased risk for infections

Fortunately, these side effects are temporary and go away once the treatment is complete. Your doctor will treat you symptomatically to ease out side effects as possible.

Further, post-transplant immunosuppressive drugs help you avoid rejection and further complications. A suppressed immune system makes you vulnerable to other sprouting illnesses like infections, poor wound healing, and so on. Be watchful of your environment.

Coping with AML

Coping with cancer is extremely difficult in itself. On top of that, facing the world is another dilemma you need to face. Try to accept your condition and talk to your family and friends about your diagnosis. Let out your fear and gather yourself back. Stay composed and work things out so that everything falls in place in the best possible way for you.

Keep yourself protected from pollution and from people who can be potential sources of transmitted infections like flu, cough, tuberculosis (TB), and so forth. Viral infections would further complicate your already debilitating health. Some ways to avoid these complications are to use a face mask while going out, wear gloves before touching any potentially contaminated surface, wash your hands often, and eat whole organic foods.

Lastly, have faith in yourself and never stop fighting. Remember that after a deep dark night, there can be sunshine.

 

 

 

References

Cancer.net Editorial Board, (01/2019) Leukemia – Acute Myeloid – AML: Statistics. Obtained from: https://www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/statistics

Cooper GM. The Cell: A Molecular Approach. 2nd edition. Sunderland (MA): Sinauer Associates; 2000. The Development and Causes of Cancer. Available from: https://www.ncbi.nlm.nih.gov/books/NBK9963/

De Kouchkovsky, I., & Abdul-Hay, M. (2016). ‘Acute myeloid leukemia: a comprehensive review and 2016 update’. Blood cancer journal, 6(7), e441. doi:10.1038/bcj.2016.50

Döhner, H., Estey, E., Grimwade, D., Amadori, S., Appelbaum, F. R., Büchner, T., … Bloomfield, C. D. (2017). Diagnosis and management of AML in adults: 2017 ELN recommendations from an international expert panel. Blood, 129(4), 424–447. doi:10.1182/blood-2016-08-733196

Döhner, H., Estey, E., Grimwade, D., Amadori, S., Appelbaum, F. R., Büchner, T., … Bloomfield, C. D. (2017). Diagnosis and management of AML in adults: 2017 ELN recommendations from an international expert panel. Blood, 129(4), 424–447. doi:10.1182/blood-2016-08-733196

Estey E, Döhner H. Acute myeloid leukaemia.Lancet. 2006 Nov 25;368(9550):1894-907. DOI: 10.1016/S0140-6736(06)69780-8

Kawamoto H, Minato N. Myeloid cells. Int J Biochem Cell Biol. 2004 Aug;36(8):1374-9. DOI: 10.1016/j.biocel.2004.01.020

Kristinsson, S. Y., Björkholm, M., Hultcrantz, M., Derolf, Å. R., Landgren, O., & Goldin, L. R. (2011). Chronic immune stimulation might act as a trigger for the development of acute myeloid leukemia or myelodysplastic syndromes. Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 29(21), 2897–2903. doi:10.1200/JCO.2011.34.8540

Rachel Nall, Christina Chun. Survival Rates and Outlook for Acute Myeloid Leukemia (AML). Obtained from: https://www.healthline.com/health/acute-myeloid-leukemia-survival-rates-outlook

Saultz, J. N., & Garzon, R. (2016). Acute Myeloid Leukemia: A Concise Review. Journal of clinical medicine, 5(3), 33. doi:10.3390/jcm5030033

 

CLL Genetic Testing Explained

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CLL Genetic Testing Explained from Patient Empowerment Network on Vimeo.

 Genetic testing results can impact a chronic lymphocytic leukemia (CLL) patient’s treatment options and prognosis, but these tests are different from the “hereditary” tests you hear about.  Learn about the types of testing available, how the information is used to guide treatment decisions and clear steps to empower you to work with your healthcare team to access personalized care. Want to Learn More? Download the CLL Genetic Testing  Resource Guide here.

See More From Your CLL Navigator

Related Resources

 

CLL Genetic Tests: How Do Results Impact Treatment and Care?

  

Essential Lab Tests for CLL Patients

  

How Can Patients Advocate for Genetic Testing?

 

Transcript:

CLL Genetic Testing Explained

Chronic lymphocytic leukemia, also known as CLL, is a type of blood cancer that occurs when the bone marrow makes too many abnormal or cancerous lymphocytes. It is the most prevalent type of leukemia in adults. Some forms of CLL are slow growing and may not require treatment immediately, if at all. Patients with CLL are monitored closely to determine when, or if, they will need treatment.

How Can You Learn More About Your CLL?

Genetic tests can provide more detail about your specific disease. By using laboratory approaches to identify changes in chromosomes, genes or proteins occurring in your CLL cells, the results can assist your healthcare team in providing better overall care. These tests do not look for genetic changes you inherit or that you pass on to family members. A gene mutation is an abnormal change in a gene’s DNA sequence.

Identifying mutations and changes in chromosomes can help determine:

  • Whether a patient needs closer follow up.
  • A patient’s prognosis and outcome.
  • And the best treatment for that individual person.

The types of genetic tests that physicians use for patients with CLL include:

  • Fluorescence in situ Hybridization, or a FISH Test, which is used to identify specific genes or chromosome changes. This type of test is essential before beginning a treatment regimen.
  • Molecular testing identifies specific gene variations or mutations. Types of Molecular tests include:
  • Polymerase chain reaction, PCR for short
  • DNA Sequencing
  • and Next-Generation Sequencing

Your healthcare team can determine which type of tests are appropriate for you.

Mutations associated with CLL include:

  • Notch1 mutation
  • TP53 mutation
  • and SF3B1 mutation

Your healthcare team will look for the following changes in chromosomes using the FISH test:

  • Deletion 13q
  • Trisomy 12
  • Deletion 11q
  • and Deletion 17p

Patients with Deletion 17p do not respond well to chemotherapy. These patients have a better response to oral targeted agents and should strongly consider a clinical trial for treatment. Prior to treatment, your healthcare team should check for the IGHV mutation. This mutation in CLL patients is a favorable finding, and indicates that the patient may have a slower growing cancer that is easier to treat. Watch and wait, also known as active surveillance, is the period of time before treatment begins in which a patient is monitored closely. When the disease progresses or symptoms occur, your healthcare team will begin treatment.

When it’s time to treat, there a number of approved CLL treatment options Including:

  • Oral targeted therapy
  • Clinical trials
  • Monoclonal antibody therapy
  • Chemotherapy in combination with a monoclonal antibody
  • And stem cell transplant

How Can You Take Action?

  • Make sure you see a CLL specialist.
  • Discuss which tests you should undergo with your doctor.
  • Review the results with your doctor.
  • Do your own research on the findings.
  • Work with your healthcare team to determine a personalized treatment plan for Your CLL.
  • Ask your doctor when you should be re-tested.

Ten Things I Wish I Had Known When I was Diagnosed with Breast Cancer

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As soon as the first golden leaves of autumn appear on the trees a feeling of sadness starts to descend over me. I’m catapulted back over the years to a late September day. A day that’s etched forever on my mind. The day I was diagnosed with breast cancer.

In the weeks that followed my diagnosis, I became enveloped in a sea of pink as Breast Cancer Awareness Month took place. But when October came to an end and the pink ribbon wearers disappeared, I was left wearing the everyday reality of the disease. Over a decade has passed since then and yet I still feel a sense of sadness when I think of that time and all I had yet to learn and go through. I can’t help wondering how much my experience might have been different if I had known then what I know now.

One thing I now know is that we owe it to those who come after us to share our hard-earned wisdom. So in that spirit, here are ten things I wish I had known back when I was a newly diagnosed patient.  I hope sharing these lessons may make the path towards recovery that little bit smoother for others who are new to this journey.

1. Everything in your life is about to change

Once you’ve been baptized in the fire of cancer your life as you knew it will be irrevocably changed. The apparent randomness of a cancer diagnosis can shake your sense of identity to its very core and afterwards nothing will ever feel certain again.   Cancer invades not only your body but every other area of your life, including your relationships, family life, friendships, finances, career, and even your sense of self. You may be surprised to find the people you thought you could count on disappear from your life. At the same time, you will be surprised to find support can also come from unexpected sources.

2. Online support is real

Among those unexpected sources will be the people you meet online. Online communities may be virtual but they are no less real in terms of support and advice. On Facebook and Twitter you can find patient communities which will be an invaluable source of information and support to you. Check out the #BCSM Twitter chat – a weekly chat for breast cancer patients and their caregivers.

3. You will feel fearful and anxious

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer pathway. Anxiety is a natural human response that serves a biological purpose. It’s the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. All of these signs indicate that sympathetic arousal of your nervous system has been activated, preparing you to stand your ground and fight or take flight and run away from danger.

Try this coping tip. When we are fearful and anxious we tend to breathe more shallowly.  Shallow breathing, which doesn’t allow enough oxygen to enter our bodies, can make us even more anxious. Practice taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

4. You are your own best health advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

5. Your will experience brain fog

Cognitive impairment, to a lesser or greater degree, can affect you both during and after your treatment. You may have the feeling that your cognitive abilities are slower and less acute than before – almost as if your brain is shrouded in a fog. We call this the “chemobrain” effect and the effect may persist for months or even years after treatment ends.  A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking.

PCCI symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. However, there are several things that you can do to help you cope with its symptoms. Read this article for more information.

6. You will experience bone-crushing tiredness

We all know what it’s like to feel tired – physically, mentally, and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough.  You experience a persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease.

A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Read How To Cope With Cancer-Related Fatigue for more tips and information.

7. You may be surprised by feelings of guilt

Cancer-related guilt is a complex emotion. You may feel guilty and worry that your lifestyle choices somehow contributed to a cancer diagnosis. If you learn that you carry the BRCA1/2 gene, you may feel guilty that you could pass this gene mutation on to your children.  Or you may feel guilty that your cancer was diagnosed at an earlier stage than a friend or family member who has a worse prognosis.  These feelings of guilt may surprise you, but it’s a perfectly normal reaction to a traumatic life event like cancer. Read How Do You Deal With Cancer Guilt to learn more about this topic.

8. You will feel pressured to stay in a positive frame of mind

I admit I caved in at the beginning to pressure to stay strong and positive when I was first diagnosed with breast cancer. I did it because it reassured the people around me.  While I accept that for some people maintaining a positive attitude is a valid coping mechanism, for myself and many others, the pressure to always show our sunny side is a denial of our pain, anger, grief, and suffering. I now believe by promoting this attitude in the face of cancer, we create unfair expectations and deprive patients of an outlet for their darker fears. This is my personal viewpoint, and it’s one that I don’t expect everyone to share. However, I mention it here so that those who are newly diagnosed don’t feel they have to always present a smiling face to the world. It really is ok to express your fears, your sadness, your anger, and your grief too.

9. You will need time to grieve

While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part of the experience. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life.   

10. Cancer doesn’t end when treatment does

I wish I had been better prepared for how I would feel when cancer treatment ended. I just assumed I would pick up where I had left off and get on with my life as if cancer was no more than a blip. I wish someone had told me that cancer doesn’t end when treatment does.    Sometimes, there can be a code of silence surrounding the aftermath of cancer treatment.  There is an expectation that when you walk out of hospital on that last day of treatment, your cancer story has ended. But in many ways it’s only just beginning.

I now know that cancer is more complicated than simply being disease free and that a physical cure doesn’t mark the end of the healing process. Adapting to changes in energy and activity levels, adjusting to altered relationships at work and in your personal relationships, coming to terms with a changed body image, and managing pain and treatment side effects are some of the things you will face in the post-treatment phase of recovery. Be compassionate and gentle with yourself as you move through this stage of your cancer journey. Don’t judge yourself or feel pressured by others to try to hurry this stage along.

Wrapping Up

Being diagnosed with cancer is a life-changing event. You will go through many emotions and experiences throughout the roller-coaster ride of diagnosis, treatment, and beyond. Each person will experience it in their own way. While there’s no right or wrong way to go through the experience, it’s important that you don’t ever feel as if you have to go through it alone. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.

Is Multiple Myeloma Hereditary? What you need to know

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Is Myeloma Hereditary? The Facts.

Is Myeloma Hereditary? The Facts. from Patient Empowerment Network on Vimeo.

 Can myeloma be inherited? Dr. Irene Ghobrial, a myeloma expert and researcher, explains whether myeloma is hereditary.

See More From Fact of Fiction? Myeloma

What empowered patients need to know about Multiple Myeloma

This disease is a type of blood cancer that spreads through plasma cells and attacks bone marrow (the bone center). While healthy plasma cells typically help the human body to fight against infection, disease-affected plasma cells produce abnormal antibodies called M Protein.

M Protein might result in tumors or kidney damage, damaging bones and severely affecting the body’s immune system.

Multiple Myeloma is, in fact, a high level of M Protein in the human body. As Multiple Myeloma finds its roots in the body, affected plasma cells release chemicals that cause bones to dissolve. The affected area of bone is known as a lytic lesion. As it grows, plasma cells begin to seep out of bone marrow and cause more organ damage. Multiple Myeloma affects bone marrow in the spine, pelvic bones, ribs, shoulders, and hips. This disease most often affects people age 40 and older, and chances of developing it increase with age. It affects men twice as often as women. It is the second most common form of blood cancer and the first most common to affect the skeleton.

Causes of Multiple Myeloma

The actual cause of malignant (infectious) plasma cells is still unknown. Proteins produced as a result of disease cause thickening of blood and deposits of proteins in organs that can affect the functions of kidneys, immune system and nervous system. Viruses, radiation exposures, and immune disorders may also trigger the disease.

The Role of plasma cells in the body

Plasma cells are a type of white blood cell found in bone marrow. Plasma cells play an important role assisting the body to fight against external attacks. A major part of the body’s immune system, plasma cells produce disease-fighting proteins called immunoglobulins, or antibodies.

Plasma cells develop from a type of white blood cell called B cells. Plasma cells produce antibodies to fight with disease and infection. Plasma cells produce different antibodies based on different types of disease, so various antibodies are present in the human body.

What does Multiple Myeloma do to plasma cells?

In Multiple Myeloma, healthy plasma cells transform themselves into malignant plasma cells (Myeloma cells) through an intricate, multistep process. Myeloma cells produce large amounts of a single abnormal antibody called M protein. Unlike normal antibodies, M protein does not fight infection. Malignant plasma cells multiply themselves and start replacing healthy blood cells in the bone marrow, resulting in decreased numbers of red blood cells, white blood cells, and platelets.

In healthy bone marrow, another type of white blood cell known as a “B cell,” develops into an antibody-producing plasma cell when antigens enter the body. In Multiple Myeloma, DNA damage to B cells transforms normal plasma cells into malignant Multiple Myeloma cells. The cancerous cells multiply and start growing enormously thus making less room for normal plasma cells in bone marrow resultantly affecting the immune system to severe level.

How does this affect the body?

Multiple Myeloma plays the role of an enemy to the defensive system—the body’s white blood cells. As abnormal plasma cells start to replace normal cells, the reduction of healthy cells in the body causes anemia, excessive bleeding and decreased immunity. Growth of abnormal cells damages major body organs, such as the kidneys. In severe cases it causes tumors as well.

Most patients diagnosed with Multiple Myeloma have osteolytic lesions, which are weakened spots on bones. This bone destruction increases the risk of fractures. It can also lead to a serious condition called hypercalcemia (increased levels of calcium in the blood).  (See “Signs and Symptoms”).

Diagnosis and risk factors of Multiple Myeloma

Researchers have made several advancements to identify how this disease develops, yet the exact cause of Multiple Myeloma remains unidentified. Genetic mutations have found to play a role in Multiple Myeloma. Genes are just like the codes, or more precisely instructions, DNA provides to form proteins. Approximately 30,000 genes make up the human genome. Each cell contains 23 pairs of chromosomes that can be read in different ways to lump together about three proteins each. Copying each cell includes generating 23 pairs of chromosomes. During this process protein formation mutations may alternate resulting in a severe effect on proteins made by genes. Such error in protein formation may cause cells to grow and divide in an unconventional manner resulting in cancerous cells.

Basic factors involved in Multiple myeloma disease, role of genetic mutation and chromosome translocations which include turning unnecessary genes on while turning off necessary genes. These translocations are observed in almost 40% of cases of Multiple Myeloma.

Specific mutations have been identified as genetic risk factors for both developing Multiple Myeloma and likelihood of early relapse. For instance, chromosome 13 is deleted in Multiple Myeloma cells in about half of all cases. Additionally, chromosomal translocations (where pieces of a chromosome are swapped, turning some genes on when they should be off and vice versa) are observed in about 40% of Multiple Myeloma cases.

Despite these known genetic risk factors, Multiple Myeloma, like all cancers, is heterogeneous, meaning each case is unique. The genetic mutations that cause Multiple Myeloma in one person often differ from those that cause it in another. In fact, MMRF initiatives such as the Multiple Myeloma Immunology Initiative study have shown that Multiple Myeloma has at least 12 different genetic subtypes, rather than a single genetic makeup.

Common sites for bone damage

Multiple myeloma affects skull bones, spine, pelvis, long bones and compression in spinal cord. This disease spreads slowly and shows its complete sign when completely takes over the major bones in the body, especially the skull bones.

In severe cases, complete vertebrae damage causes compression of the spinal cord. Loss of bone integrity can cause pathological fracture.

Mechanism of Disease

  1. Plasma cell proliferation: anemia, bone marrow suppression, infection risk.
  2. Osteoclasts : bony lesions, fractures, vertebral collapse, spinal cord compression.
  3. Paraprotein: renal failure.
  4. Hypercalcemia: thirst, drowsiness, coma, polyuria.

Signs and Symptoms of Multiple Myeloma

Based on Multiple Myeloma cases observed so far, following are the signs and symptoms of Multiple Myeloma:

  • Anemia,
  • Bleeding,
  • Nerve damage,
  • Skin lesions (rash),
  • Enlarged tongue (macroglossia),
  • Bone tenderness or pain (including back pain, weakness, fatigue, or tiredness),
  • Infections,
  • Pathologic bone fractures,
  • Back pain,
  • Spinal cord compression,
  • Kidney failure and/or other end-organ damage,
  • Loss of appetite and weight loss,
  • Constipation,
  • Hypercalcemia (high levels of calcium in the blood), and
  • Leg swelling.

 

Is Multiple Myeloma hereditary?

Multiple Myeloma is not considered a hereditary disease. While in some cases Multiple Myeloma may occur due to genetic abnormality, there is no evidence that heredity plays any role in its development. Research has shown several factors may contribute towards the development of Multiple Myeloma. While researchers have indicated a very slight chance that disease could be transferred from parents to their offspring,  it’s very uncommon for more than one member of a family to have multiple myeloma.

Stages of Multiple Myeloma

Progressive stages of Multiple Myeloma have been recognized as follows:

  • Smoldering: Multiple myeloma with no symptoms.
  • Stage I: Starts with anemia, relatively small amount of M protein, no bone damage.
  • Stage II: Severe anemia and M protein as well as bone damage.
  • Stage III: Huge concentration of M protein, anemia, kidney damage.

Tests types for diagnosis of Multiple Myeloma

Diagnosis includes a study of past medical history and a physical examination of the patient.  Bloodwork can then check platelet counts for a drastic reduction in white blood cells. Blood chemistry tests may include tests for BUN (blood urea nitrogen), creatinine levels, or uric acid. A bone marrow biopsy and aspiration can further examine the concentration of abnormal plasma cells in bone marrow.

Urine tests check the body’s protein level. A UPEP (urine protein electrophoresis) test checks the level of M Protein in the blood. UIFE (urine immunofixation electrophoresis) identifies the type of M Proteins present in the urine.

Genetic tests can check for abnormal chromosomes and genes. Different types of tests can examine cellular health. Bone marrow cells grow to make cells divide, so dividing cells can be examined. Plasma cells proliferation can be tested to identify the rate at which cells are dividing. A large number of cells dividing is a sign that cancer is growing fast.

Imaging Tests:

Imaging tests take pictures inside of the patient’s body. These tests are easy to undergo.
Bone survey imaging includes use of X-Rays to take pictures of your skeleton.  As Multiple Myeloma causes major bone damage, a bone survey depicts exactly how many and which bones have been damaged due to the disease.

An MRI Scan uses radio waves and powerful magnets to scan the body. An MRI scan targets the bone marrow for observation. This type of test reveal abnormal areas in the bone marrow where the abnormal plasma cells have affected the bone marrow. This test is far better than a bone survey test, as it reveals minor details of the bone marrow.

Treatment of Multiple Myeloma

Treatment of Multiple Myeloma varies from patient to patient as cases become more and more complex. But some commonly treatment practices are explained briefly below.

Radiation therapy: Treats a small mass of affected cells. Radiation therapy normally targets the damaged part of bone (where cancerous cells have affected bone causing severe damage). Radiation therapy includes use of high energy rays to kill and stop growth of damaged cells stopping cancer growth. ERBT (external beam radiation therapy) is the most common type of therapy done.

Surgery: Involves removing or repairing of a body part. It can also fix the bones that have been damaged due to Multiple Myeloma.

Chemotherapy: Involves the use of drugs to kill the cancer cells. It kills the fast growing cells and in some cases it also damages bone marrow.

Stem Cell Transplant: Stem cell transplant replaces damaged cells in bone marrow with healthy plasma cells.

Order of Treatments: Different patients have been given different type of treatments based on type of areas affected. But the order of treatment remains the same. The initial treatment given is known as Primary Treatment, which includes the curing the cancer after the diagnosis. This treatment is also known as an Induction Treatment. the Second step is of Maintenance Treatment, which is done to keep cancer cells suppressed.

Survival chances of Multiple Myeloma patients

Statistics can be confusing because each Multiple Myeloma case varies from patient to patient.
Survival rates are measured from the first point of treatment, such as chemotherapy. In the past, patients often could not survive even beyond the first stage of treatment because when cancer cells grow fast they cause too much damage. Since 2000 the percent of patients living five years after diagnosis has been increasing considerably, for up to 50 percent of patients.

Lifestyle and diet tips for patients of Multiple Myeloma

The lifestyle advice for patients of Multiple Myeloma includes reducing or avoiding tobacco use and alcohol intake and exercising often. Patients should eat more fresh fruits and vegetables. During and after treatment severe weakness can be felt in bones and muscles which can covered by eating healthy and nutritious meals after every 2 to 3 hours. Inactive patients may start with short walks increasing the length or intensity daily until they can enjoy extended periods of movement and exercise time.

Summary

The cause of  Multiple Myeloma, an infectious disease, is still unknown. Researchers have shown that disease is not hereditary disease. It is very rare that two persons in same family become affected by Multiple Myeloma. Finding a cure for Multiple Myeloma has proven very difficult.

It takes considerable time for patients to recover completely. For survivors, statistics show that damage done by this disease cannot be reversed one hundred percent. People who are 40 years old or more have fair chances of being affected by Multiple Myeloma disease. Extended research needs to be done to find the exact root cause of this disease so that upcoming generations can be saved. Survival rates are low compared to other fatal diseases.

 

References:

https://www.medicinenet.com/multiple_myeloma/article.htm

https://www.cancer.org/content/dam/CRC/PDF/Public/8740.00.pdf

https://ghr.nlm.nih.gov/condition/multiple-myeloma

Understanding and Managing AML Treatment Side Effects

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AML expert, Dr. Jessica Altman, discusses how AML affects the body, and the common side effects patients may experience during varying AML treatment phases.  

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series

Related Resources

AML Genetic Testing Explained

What is Targeted AML Therapy?

AML Treatment and Side Effects Program Resource Guide

Transcript:

Patricia:            

Dr. Altman, let’s talk about some common AML treatment side effects. What are some of the things that patients can expect when they begin treatment?

Dr. Altman: 

So, the side effects depend in part on the actual treatment strategy that’s utilized. It’s also important to note that AML itself has symptoms, and so sometimes it’s hard to separate out the symptoms of the Acute Myeloid Leukemia and the symptoms from the treatment. Acute Myeloid Leukemia is a disease where the bone marrow is not functioning normally. The bone marrow is responsible for making healthy red blood cells, healthy white blood cells, healthy platelets, and also is very intimately involved with the immune system. 

And so, patients with Acute Myeloid Leukemia by itself without treatment are at risk for fatigue if the hemoglobin is low, bleeding and bruising when the platelet count is low, and at risk for infections. 

Also, shortness of breath and other side effects from having abnormal blood counts. In addition, the treatment frequently lowers the blood counts further, and the treatment itself increases those risks associated with low blood counts. Patients can be supported with blood transfusions. Patients are also supported with antimicrobial therapy to prevent infections, and if fever or infections occur despite that, patients receive additional antimicrobial therapy based on what the perceived organism is. 

Patients with Acute Myeloid Leukemia, when they receive chemotherapy, are also sometimes at risk for something called tumor lysis syndrome. 

That’s when we kill the leukemia cells, when the leukemia cells are killed quickly, sometimes the contents of the leukemia cells can inflame the kidneys and lead to alterations in the electrolytes and the acids and salts in the body, and that’s something that needs to be monitored for and prevented. 

Patients with Acute Myeloid Leukemia who receive chemotherapy are also at risk for organ inflammation, and that is something that is monitored with the blood counts.

Patricia:     

What can patients or their caregivers suggest to help manage some of these side effects?

Dr. Altman:    

So, I think the biggest side effect that might be the hardest for us to manage and for patients to manage is fatigue. And I’m a believer that energy begets energy, and so trying to be as active as one can throughout all phases of their treatment I think helps the most. And also, the hopeful recognition that the fatigue should be self-limited, and that with time away from treatment, the energy should improve.

I think that’s one of the biggest things I hear from my patients.

AML Treatment Side Effects: What’s Fact and What’s Fiction?

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AML expert, Dr. Jessica Altman, addresses AML treatment side effects, such as nausea and changes in taste, in addition to discussing best practices for researching AML online.  

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series

Related Resources

   

Can AML Be Cured?

    

Managing AML Symptoms

    

AML Treatment and Side Effects Program Resource Guide

Transcript:

Patricia:          

All right, a little more fact and fiction now. Here’s what we hear from AML patients about treatment side effects. Tell me if this is true or not. “Treatment side effects are unavoidable.”

Dr. Altman:          

I think it’s probably true, but I don’t think it’s completely true. So, I think they’re a long ways away from being in that Hollywood picture of someone with cancer vomiting over the toilet. We have very good anti-nausea therapy that we give as preventative treatment, and we give the anti-nausea therapy different antiemetics based on the emetogenicity, or the risk of nausea related to chemotherapy.

And we know that. We know how risky an individual and a specific chemotherapy regimen is. In addition, there are additional anti-nausea medications available for all of our patients should they have nausea above and beyond what the preventative medications can handle. So, that’s one that I think, that nausea doesn’t have to occur and we can treat nausea. Many patients with Acute Myeloid Leukemia, with treatment, will experience fever that is related to the low blood counts and related to the chemotherapy itself. That being said, we give preventative antimicrobial therapy to prevent infection as one of the potential causes of fever.

Patricia:          

Is there an increased risk of sunburn and skin cancer with AML?

Dr. Altman:         

So, some chemotherapies increase the risk of sun exposure and damage and sunburns. IN addition, some of the preventative antimicrobial medication that we use also can cause some skin sensitivity. There is a risk, whenever we give chemotherapy, of an increased chance in the future of secondary cancers. The risk of that is very low, but that is a risk that I talk about with all of my patients. Skin cancer is one of the cancers. There also is potential increased risk of thyroid cancer, increased risk of other bone marrow damage. And so, that is part of the conversation that I have with my patients.

Patricia: 

The internet is a wonderful place, Dr. Altman, but for AML patients or anyone looking up medical information it can be overwhelming and infinite.

And confusing. What are some of the things that AML patients should think about when they’re researching their cancer on the internet?

Dr. Altman:          

So, I think the most important thing is to have a conversation with their healthcare practitioners and ask their healthcare practitioners what resources they recommend. And I think being upfront and telling your doctors that you’re utilizing the internet is always welcome by the healthcare provider. So, I think that utilization of the internet is fine, but just making sure that you ask your healthcare provider what resources he or she recommends.

Patricia:          

Right, right. We have a question from Mari. She says, “I had busulfan treatment for my AML with great success. Experienced a side effect of noticeably patchy and thinning hair.”

“Is there hope for finding a cure for this chemo-induced alopecia? Life and self esteem is a huge role in survivorship. It can’t simply be fixed or covered with a wig.”

Dr. Altman:

Thank you, Mari. I appreciate that question. We at Northwestern have a Dermato-Oncology program that we work with. So, we have dermatologists who are very interested in the immediate and long-term side effects of chemotherapy and the skin manifestations of cancer, including blood cancers. So, my recommendation would be to try to seek out a dermatologist in conjunction with your oncologist to help see if there are other options that exist.

Patricia:          

We also had a question from John. He wants to know if there’s a way to combat serious changes in taste and appetite from chemo.

Dr. Altman:       

So, I smirk a little bit because I keep waiting for the food scientist or food engineer to approach me about this. 

The biggest day-to-day complaint that we get from our patients is that the food tastes bad. And we know that while the hospital food might not be the greatest, it’s not just the hospital food. It’s the effect of the chemotherapy on taste buds. I don’t yet have an answer for this, but I’m very interested in finding a food scientist who can develop food that tastes normally for patients who are undergoing chemotherapy. 

What I suggest to my patients during the time period that they’re having chemotherapy is to try foods that maybe they don’t normally eat so that they don’t recognize how different it tastes from what they’re used to. And things that are a bit more bland for patients taste a little bit better, and colder foods don’t induce as much nausea for most of our patients. But another great question that I don’t have the answer to yet.

Patricia:          

I know we talked a little bit about how overwhelming the internet can be, and how confusing a lot of the information is. How can patients identify misinformation and unreliable sources if they don’t have a conversation with their doctor in the wing?

Dr. Altman:

So, I think that as you mentioned, anything on the internet is not a substitute for medical advice. I think the same pearls that I would give to anyone who’s searching anything on the internet – anything that says ‘always’ or ‘never’ is probably not to be trusted, and anything that sounds too good to be true may well be too good to be true. I would start with reputable sources. The partners that you mentioned – the Leukemia and Lymphoma Society and the Aplastic Anemia and MDS Foundation have really good websites with patient information.

And the emerging growth of this organization as well, we anticipate growth of information available to our patients. 

Social Determinants of Health (SDOH) w/@askdrfitz and @HealthSparq #patientchat Highlights

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Last week, we hosted an #patientchat on the social determinants of health (SDOH) with HealthSparq (@HealthSparq) and Dr. Lisa Fitzpatrick (@askdrfitz). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Social Determinants of Health Are A Systemic Issue

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Full Chat

Breast Cancer Before 40: How Can I Preserve My Fertility?

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Breast Cancer Before 40: How Can I Preserve My Fertility? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente discusses fertility preservation in breast cancer patients under the age of 40 and the potential for pregnancy following treatment.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: What You Should Know

Transcript:

Dr. Stephanie Valente:

So, another issue that is really important for young women is discussing fertility preservation. And this really needs to happen at the time of their diagnosis. So, we know that the cytotoxic agents that we can give females just through chemotherapy can decrease the ovary and the ability for these women to have menstrual periods after chemotherapy. So, the ability for them to get pregnant naturally.

As well as some of the medications. So, somebody who has a breast cancer that is estrogen positive, the recommendation is for these women to be on hormone suppressant medicine for five to 10 years after their breast cancer diagnosis and treatment, therefore not being able to be pregnant while on these medications. So, talking with young women when they get diagnosed about their family planning and their fertility options up front before they have surgery or chemotherapy is really beneficial.

And whether or not they need to see a fertility preservation specialist. If they want to consider IVF. Or if they have a gene, looking at genetic testing for their future offspring. So, these are all conversations that really need to happen before these women begin chemotherapy if they need it.

And the good thing is that at the young women’s clinic, these fertility specialists are embedded in the clinic. So, they are able to get an appointment with them right away. And a lot of times if these women do want to undergo fertility preservation, that can happen within 10 days of seeing the specialist. So, it really doesn’t delay their care. And we do know that it is safe even with the breast cancer diagnosis.

The other thing is that we do offer a medicine which is a GRNH agonist which will kind of essentially shut down the ovaries during chemotherapy to help protect them so that when a young woman is done with chemotherapy, it helps the ovary kind of get back to normal a little bit sooner.

So, it sounds good in theory. Unfortunately, it’s not something that is covered by insurance companies right now. And so, fertility preservation is expensive. And so, the good thing is there are a lot of groups that put together packages and stuff for these young women to be able to afford it. But it is pretty pricey. So, for those that can afford it, it is a great option. And a lot of them do take advantage of it. I think there are a lot of misconceptions about it. Number one is that patients don’t really know if it’s safe.

Number two, they are scared about their overall diagnosis and a potential delay and 10 days might make some of them afraid that doing that is a good option. Another thing is when these women come in with a diagnosis of breast cancer, they see a surgeon, a medical oncologist, a radiation oncologist, a plastic surgeon.

And so a lot of times an extra appointment at that point in time is just really overwhelming for these women. So, our goal is to kind of refocus and say, “Hey, the good news is that with our modern therapies you’re going to be here for a long time. So, let’s plan for the future now so that in the future you’ve got options.”

Breast Cancer Before 40: What You Should Know

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Breast Cancer Before 40: What You Should Know from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente reviews key information for women under the age of 40 with breast cancer, including risk, treatment approaches and the role of genetic testing.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: How Can I Preserve My Fertility?

Transcript:

Sure. So, when we talk about breast cancer in young women, usually we are referring to women under the age of 40. And the prevalence for breast cancer in general is one out of eight women. For women under the age of 40, it’s about a seven percent incidence of breast cancer. So, it’s about a seven percent incidence in the general population in the United States. So, that’s about 12,500 women per year are diagnosed under the age of 40 with breast cancer.

So, the prevalence has pretty much been the same over the years. We used to think that women diagnosed at a younger age had a more aggressive breast cancer. But the more we look at things, the more we realize that women under the age of 40 usually are diagnosed at a later stage because it’s not something that somebody in their 20s or 30s is thinking that a breast lump equates to cancer. So, these women unfortunately present at a later stage.

Many times, it’s because they are pregnant, breastfeeding or just not having any family history where the first thing they think of when they get a lump is that they actually have breast cancer.

So, the first thing is women under the age of 40 usually present at a later stage, meaning that they have larger cancers, and the cancers because they are larger have had more time to spread to the lymph nodes. So, these women they don’t necessarily have more aggressive breast cancers than older women, it’s just that it’s found at a later stage.

So, the treatment options are the same for young women with breast cancer. So, depending on the size of the tumor and the size of her breast, women are given the option for a lumpectomy which usually is follow by radiation versus a mastectomy. And studies have shown that either surgical choice is a good option for women. And that one surgery doesn’t make a young woman, or an older woman live any longer.

That the survival for breast cancer is based on stage not the choice of surgery that they pick.

So, one of the first things is that women under the age of 50 – the average age for breast cancer in the United States is between 64 and 68.

So, if you are under the age of 50 or under the age of 40 there’s a higher chance that maybe these women carry a gene that would increase the risk of getting breast cancer. And so nowadays, we test over 21 genes. But these genes can increase their risk of getting breast cancer not only in the breast they have the breast cancer in, but in their other breast as well. It also increases the risk for other types of cancers such as ovarian cancer. And they could potentially pass this gene on to their kids.

So, sometimes women – and this is the great thing about academic medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, one of the things for any woman diagnosed with breast cancer at a young age is to offer those women genetic testing. And sometimes it can be a relief or sometimes it can be very challenging for these women to think, “Oh my gosh. I have this gene. I’m at increased risk for more cancers.” And that potentially they could pass that on to their children.

So, having the women who come in meet with a genetics counselor to go over the risks. And the reality is that of all the women under the age of 50 that test for the gene, only 10 percent actually carry the gene.

So, the good thing is that 90 percent most likely don’t have the gene. But it still is an anxiety provoking thing for these women to go through.

Another thing is that these women a lot of times are younger. So, they have either two things – young children to take care of which is extremely difficult to mange an already stressful motherhood. You throw in a diagnosis of cancer, whether or not there is a dad involved or a father that needs to help out with these kids. A lot of times their families need to help out. So, we have a psych oncologist that’s part of our team. And it’s really great. How do you tell your kids you have cancer? And how do you manage kind of day-to-day life with going through this? So, that’s another great program that is offered. And importantly for a woman who doesn’t have children but maybe desires to have children or even to have more children than the ones that she has,
looking at fertility options for young women is huge.

So, we know that some of the chemotherapy that we give breast cancer patients decreases their ability to have children in the future. So, the chemotherapy can shut down the ovaries. So, sometimes women – and this is the great thing about academic
medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, the one thing is that I tell these women that breast cancer takes a good year between chemotherapy if they need it, surgery, radiation of they need it and the whole process of recovery. That is really takes a good solid year before they are kind of done going to their doctor’s appointments. But the reality is that for an early stage breast cancer, studies have show for young women the overall survival is over 92 percent. So, I say, “This is going to be a tough year. We are going to get through this together. And the good thing is that you are going to be alive in five, 10, 15, 20 years. And so, our goal is to get you the best quality of life not only now but in the future.”

As far as hope for young women with breast cancer, things are changing so fast. The medicine that’s out there – we’re doing these studies where women are getting chemotherapy and by the time they get to surgery about 40 to 60 percent of the tissue that I take out has no residual cancer. That’s phenomenal. That means that the medications that these women are getting are working really well for their cancer. And so, the hope is that in 10 years I don’t have a job because the medicine that they are getting works so well that the cancer can be removed without needing surgery. And so, I think in our lifetime we will find either a cure or a complete resolution of breast cancer.

What is Targeted AML Therapy?

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 AML expert, Dr. Jessica Altman, defines targeted AML therapy and outlines available treatment options. Want to learn more? Download the Program Resource Guide here.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See More From The Fact or Fiction? AML Series

Related Resources

 

Your Pro-Active AML Patient Toolkit

  

AML Genetic Testing Explained

  

What’s Next in AML Research?

Transcript:

Patricia:

Can you talk a little bit about targeted therapy?

Dr. Altman:

Absolutely. So, targeted therapy – while meant to be specific, because a target is meant to be specific – targeted therapy has become a relatively broad characterization of additional treatments. We think about targeted therapy as the addition of agents that specifically inhibit or target an abnormality associated with the leukemia. The most prominent targeted therapies right now involve specific mutations seen in Acute Myeloid Leukemia. 

For instance, about 30% of adults who have newly diagnosed AML will have a mutation in something called FLT3, or F-L-T-3. There is now an approved drug that is combined with standard intensive induction chemotherapy that improves the
response rate and overall survival in adults with AML with a FLT3 mutation. In addition, there is now an approved agent for relapsed and refractory FLT3 mutating leukemia. 

Patricia:

What about molecular testing? What can you say about that?

Dr. Altman:

Molecular testing is part of the workup for an adult or a child when they’re newly diagnosed Acute Myeloid Leukemia. And molecular abnormalities look for specific known mutations that occur in Acute Myeloid Leukemia cells. 

For instance, that FLT3 that I mentioned. In addition, the IDH mutation. Looking for those mutations has always been important in understanding the prognosis, but it’s now especially important because some specific mutations, we have additional therapies that we can give as part of initial treatment or for relapsed disease that target those mutations. So, not only do they have a prognostic role, but they have a treatment impact as well.

Anxiety Management for Patients and Caregivers

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This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

Kelly Trevino, Ph.D., Clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital – Speaker Bio
  • Why anxiety management is so important for all those affected by cancer, plus actionable coping strategies.

    Guest: Kelly Trevino, Ph.D., a clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

    Host: John Leonard, M.D., world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital

Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes

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A familiar name on the tip of your tongue, keys misplaced, a train of thought derailed in the middle of a sentence. If what I’ve just described sounds familiar, you may be experiencing symptoms of “chemobrain” – a name for the cognitive (how you process and recall information) difficulties associated with cancer treatment.

Although one of the most frustrating side effects of chemotherapy, not long ago, the medical profession was skeptical when patients who had completed treatment complained of a kind of mental haze or fog. Today, despite some lingering skepticism, research studies confirm what patients have long reported – that chemobrain is a real issue for people living with and beyond cancer.

The first of these studies [1] which was published in 2011 was conducted at Stanford University and used functional MRI imaging (fMRI) to compare the brain images of healthy women and women with breast cancer. The study found that not only did brain activity differ, but that those patients who had undergone chemotherapy had additional specific differences and decreases in executive function – the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.

Signs and Symptoms of Chemobrain

A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking. Things you could do easily before cancer are now more difficult.

Symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • tiredness and mental fogginess
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

These symptoms can be especially frustrating when you are at work or in social situations. “It can be difficult to explain to others what we are going through,” explains therapist Karin Sieger [2]. “I like to use the example of a computer. If our brain was a computer used to running 6 apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only, and even then only for a short period of time. It will also take a lot longer to re-charge.”

What Causes Chemobrain?

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. People who had high doses of chemotherapy may report memory problems, but even those who had standard doses have also reported memory changes.

Cyclophosphamide, Adriamycin, 5-FU, and Taxol seem to be particular culprits, but there are others that can cause the condition.  Tamoxifen, and to a lesser degree, aromatase inhibitors may also have a negative effect on cognition.

Research also suggests that a combination of factors, including the stress and anxiety of a cancer diagnosis and side effects of treatment such as fatigue, anaemia, sleep disturbances or hormonal changes can also play a part.

Who Gets Chemobrain?

When it comes to answering the question of which patients get chemobrain, studies have reported a wide range of different figures, ranging from 17% to 60%. The condition can affect people with different types of cancer and at different times. It affects men and women of all ages, although people might be more likely to have the condition if they are older or already have problems with memory or anxiety and depression.

Can I Reduce The Symptoms Of Chemobrain?

There are several things that you can do to help you cope better with chemobrain.

Make sleep a priority

Research has found that not sleep deprivation can affect our ability to commit new things to memory and consolidate any new memories we create. Getting enough sleep is a state that optimizes the consolidation of newly acquired information in memory. [3]    Even a short nap can improve your memory recall.

Take regular exercise

Studies have shown that regular exercise can improve memory as physical activity will increase blood flow to your whole body, including your brain. [4]    There are many benefits to exercise. Not only does it help reduce the symptoms of fatigue (which exacerbates cognitive processing) exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.  Easing stress and elevating mood may also ease chemobrain symptoms.

Keep your mind active

Just as physical activity helps keep your body in shape, mentally stimulating activities help keep your brain in shape too. Doing crosswords, sudoku and puzzles will help to keep your mind exercised. You may also like to try computer pro­grams that are designed to improve memory and attention span.

Practice mindfulness meditation

Research has shown that practicing mindfulness can improve memory recall in just eight weeks. Meditation has also been shown to improve standardized test scores and working memory abilities after just two weeks. [5]

Eat more berries

More research is needed in this area, but some studies show that phytochemical-rich foods, such as blueberries, are effective at reversing age-related deficits in memory. [6] Blueberries are a major source of flavonoids, in particular anthocyanins and flavanols. Although the precise mechanisms by which these plant-derived molecules affect the brain are unknown, they have been shown to cross the blood brain barrier after dietary intake. It’s believed that they exert their effects on learning and memory by enhancing existing neuronal (brain cell) connections, improving cellular communications and stimulating neuronal regeneration.

Ten Tips to Help You Cope With Chemobrain

Below you’ll find a list of everyday self-help tips which will help restore your confidence at work and in social situations when you feel brain fog descend.

  1. Lists are your friend. Write daily lists about the errands you need to run, things you need to buy and where you have left important things.
  2. Carry a notebook with you to keep track of daily activities and things you want to remember. Make use of daily planners, wall planners, smart phones, and other organizers.
  3. Put sticky notes as reminders in places where you will easily see them.
  4. Say information you want to remember out loud five or six times to help fix it in your memory.
  5. Try linking a visual image with the information you want to remember.
  6. Leave a message on your answering machine or set an alert on your phone to remind yourself of something important.
  7. Get in the habit of keeping everyday items like your keys and cell phone in a regular place for easy retrieval, for example a basket or table by your front door.
  8. Avoid trying to do too many things at the same time. Concentrate on one task at a time and don’t multitask. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
  9. Plan ahead. List your 3 most important tasks to deal with the night before, so you can hit the ground running the next day.
  10. Do the most difficult tasks of the day first thing when you are most alert.  If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days.

When To Seek Further Support

For most patients, chemobrain improves within a year after completing chemotherapy, although around 10-20% of people may have long-term effects even ten years after treatment. However, these side effects should be stable. If you have tried self-help techniques but the symptoms are not improving, you should speak with your doctor who may refer you to a neuropsychologist.

Neuropsychologists are psychologists with special training that prepares them to help people experiencing trouble in areas such as attention, new learning, organization and memory. A neuropsychologist will do a complete evaluation and determine if there are any treatable problems such as depression, anxiety, and fatigue.  It’s important to make sure you’re receiving treatment for any depression, anxiety, or sleep problems. Make sure you also have had your thyroid, vitamin D and B12 levels checked.

Chemobrain is a frustrating side-effect of treatment and a reminder that cancer isn’t done with us when treatment ends. It’s important to know that there is help available. Don’t ever feel you are alone when it comes to dealing with the ongoing effects of cancer. Talk to your doctor and reach out to your online patient community for support and practical tips on coping with chemobrain.

References

[1] Kesler, S.R. et al. Prefrontal Cortex and Executive Function Impairments in Primary Breast Cancer, Arch Neurol. 2011;68(11):1447-1453

[2] Karin Sieger

[3] Born, J., Rasch, B., & Gais, S. (2006). Sleep to Remember. The Neuroscientist, 12(5), 410–424. 

[4] Erickson, K.I, et al. Exercise training increases size of hippocampus and improves memory Proceedings of the National Academy of Sciences Feb 2011, 108 (7) 3017-3022.

[5] Mrazek, M. D., Franklin, M. S., Phillips, D. T., Baird, B., & Schooler, J. W. (2013). Mindfulness Training Improves Working Memory Capacity and GRE Performance While Reducing Mind Wandering. Psychological Science, 24(5), 776–781.

[6] The Peninsula College of Medicine and Dentistry. “Getting Forgetful? Then Blueberries May Hold The Key.” ScienceDaily. 12 April 2008.

 

 

Patient Experience: Let’s Talk Patient Burnout #patientchat Highlights

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Last week, we hosted an #patientchat on the patient experience and patient burnout. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Burnout Is Real and Normal

Many Factors Can Lead to Burnout

Full Chat

5 Easy Ways to Improve Your Lung Health

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The lungs provide the body with life-giving oxygen on a moment-by-moment basis while expelling carbon dioxide waste along the way. Considering how essential these tasks are, it’s no surprise that the health of the body as a whole suffers when chronic lung problems develop. Lung exercises provide ways to help your lungs become more efficient at managing airflow and oxygen levels. Here are five easy ways to improve your lung health along with a brief overview of how your lungs work.

The Nuts and Bolts of Lung Health – Lung Function vs. Lung Capacity

The lungs have a two-fold job of delivering oxygen to the bloodstream while removing carbon dioxide from the body. Every cell in the body draws oxygen from the blood and deposits carbon dioxide as waste into the bloodstream. For people living with chronic lung diseases, such as pulmonary fibrosis and chronic obstructive pulmonary disease (COPD), the lungs have difficulty supplying the body with needed amounts of oxygen.

Lung function and lung capacity determine how efficiently the lungs deliver oxygen and get rid of carbon dioxide. Lung capacity indicates how much air your lungs can hold. It also affects how quickly air moves in and out of your lungs. Your level of lung function also determines how well the lungs deliver oxygen and remove carbon dioxide from the bloodstream.

Lung function has to do with how efficiently the body uses the oxygen it receives. Whereas lung capacity can be improved, lung function cannot. This means improving your lung health is about improving your lung capacity. Lung exercises are designed to help the body make better use of available oxygen supplies. Here are a handful of easy exercises you can do to improve your lung health and make breathing easier.

5 Ways to Improve Your Lung Health

1. Diaphragmatic Breathing

Healthy breathing uses the diaphragm, which is a dome-shaped sheet of muscle that sits between the chest and the abdomen. The diaphragm muscle should help the lungs fill with air by moving down and then push air out of the lungs as it moves back up. Commonly known as diaphragmatic or belly breathing, the abdomen rises and falls with each breath.

While the diaphragm is supposed to be the primary breathing muscle, many people unknowingly develop a habit of using muscles in the neck, shoulders and back, which greatly limits the amount of air that enters and leaves the lungs. A 2016 research study appearing in the Journal of Physical Therapy Science set out to observe the effects of diaphragmatic breathing on respiratory function. Using two groups of subjects, one group engaged in feedback breathing exercises while the other practiced diaphragmatic breathing. The results of the study showed marked improvement in lung capacity for the group that practiced diaphragmatic breathing.

In effect, diaphragmatic breathing strengthens the diaphragm muscle and, in turn, helps the lungs work more efficiently. To do this exercise, you want to breathe from your belly. It helps to place one hand on your belly and one hand on your chest as you inhale and exhale. Breathe in through the nose for two seconds and then out through pursed lips for two seconds. As you exhale, press down on your abdomen to make sure you’re engaging your diaphragm muscle.

2. Pursed-Lip Breathing

Chronic lung conditions, such as bronchitis and asthma, often result from inflamed airways that prevent air from circulating through the lungs. When this happens, stale air becomes trapped inside making it difficult for the lungs to absorb new or fresh air (and oxygen). These conditions cause you to feel short of breath much of the time. Pursed-lip breathing forces the airways to stay open longer when you exhale so stale air can be expelled and more fresh air can be absorbed.

Pursed-lip breathing lung exercises are easy to do and can be done anywhere at any time. The exercise involves inhaling, slowly, through the nose and exhaling through pursed lips. The goal is to take twice as long breathing out as breathing in, so if you inhale for five seconds, you’ll want to exhale for 10 seconds.

3. Rib Stretch

The rib stretch does exactly what it says, stretching or expanding the ribs, which helps your lungs take in as much air as possible. This lung exercise requires you to be in a standing, upright position with your hands on your hips. Slowly inhale air until your lungs fill to capacity. Hold your breath for 20 seconds or for however long is comfortable and then exhale slowly. Relax and then repeat three more times. When done on a regular basis, rib stretches help you take more air into your lungs and exhale fully so stale air doesn’t build up in the lungs.

4. Laughing and Singing

Any activity that works the abdominal muscles also works the lungs. Both laughing and singing do just that. Laughing not only increases your lung capacity but also forces stale air out of the lungs so more fresh air can enter. Likewise, singing works the diaphragm muscle, which also helps increase lung capacity.

5. Increase Your Activity Level

Increasing your daily activity level, in general, can go a long way towards improving your lung health. Something as easy as brisk walking or bike riding not only works well as a lung exercise but also improves your heart health and overall mood. A study sponsored by the Canadian Longitudinal Study on Aging demonstrated the benefits of replacing just 30 minutes of sedentary time per day with strenuous or strength-building activities. Study participants had poor respiratory function due to conditions like asthma and COPD. Results from the study showed marked increases in lung capacity, enabling participants to inhale and exhale larger volumes of air on an ongoing basis.

Things to Keep in Mind

While lung exercises work well at improving your overall lung health, if you have a chronic lung disease, it’s always a good idea to consult with your doctor before starting an exercise regimen. Also, exercise almost never produces overnight results so expect to see positive results over time and not all at once. Lastly, it’s important to listen to your body, especially if chronic lung problems are an issue. Always make it a point to exercise at a pace that doesn’t overtax your condition. All-in-all, the more active your lifestyle, the better the outcome.

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How To Be A Better Caregiver When A Loved One Gets Sick

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This podcast was originally published on National Power Radio on July 12, 2019 here.

JOHN HENNING SCHUMANN

MEGHAN KEANE

None of us are prepared to be caregivers — the role is thrust upon us.

Maskot/Getty Images/Maskot

 

None of us are prepared to be caregivers — the role is thrust upon us. More than 40 million Americans are caring for an elderly parent or loved one. Here are six tips to make the caregiving burden more sustainable:

1. Accept help, and don’t be afraid to ask for it.

People will ask you what they can do early in your parent’s illness, so strike while the iron is hot, says Katy Butler, author of The Art of Dying Well.

Caregiving For A Loved One? How To Get The Help You Need

“Right after a crisis, friends and family rush in and say, ‘Is there anything I can do?’ ” Butler says. “And you’re often so overwhelmed you can’t even think. But strike while the iron is hot and take advantage of it.”

Ask for specific things like a meal or caregiving relief to allow you to take some time out.

2. Break down caregiving tasks into bite-sized solutions.

Figure out the tasks that sap your energy the most (is it bedtime? Dressing? Transportation?) then think about who you can get to help with those specific tasks. It’s a lower-cost solution than full-time care or institutionalization.

The National PACE Association can provide services that help support family members so the people they love can continue to live at home. PACE operates in 31 states; check to see if your state is one. Other options include Home Based Primary Care through the VA for eligible veterans, van services and Meals on Wheels.

3. Don’t tell your loved one what to do. Ask about the quality of life they want and how you can get them there.

Minimize conflict with your family members by identifying their goals rather than issuing them orders. That way, you can work together to achieve them.

Make a list of things your loved one really loves doing, whether it’s a weekly bridge game, listening to music or having tea with a friend. You can also find ways to help outsource these kinds of tasks, too.

“You’ve got to be thinking about what makes this person’s life worth living,” says Butler.

4. Be an empowered medical advocate for your loved one.

The inertia of aging and medical care will lead your loved one down a slope of more tests and procedures if you don’t keep track of the big picture. For many elderly parents, a good quality of life is much more valuable than more years spent suffering or tethered to medical appliances. A key caregiver job is asking how a proposed procedure will improve your loved one’s quality of life. If it won’t, then don’t.

5. Get your legal ducks in a row so you can focus on your relationship

As a caregiver, you’ll be called on for medical and financial decisions. The sooner you brave those difficult conversations for end-of-life care, the better you’ll be able to stick to your loved one’s game plan for the future.

Help your loved one create an advance directive (if they haven’t already), a documentation of a patient’s preferences regarding their care. According to surveys, only about a third of Americans have one. You can find inexpensive templates online at sites such as Five Wishes.

6. Make sure to take care of yourself, too — you are more than a caregiver.

Caregiver burnout is a real phenomenon. Taking on the role of caregiver often starts in crisis and becomes the new norm, which can alter your life forever. Make sure to take time out to care for yourself; getting away for a bit is good for you and your loved one.

Also, savor the little moments with your loved one. Your relationship roles may have changed, but you’re still family.

“Remember that you are more than just a caregiver,” Butler says. “You’re also that person’s son or daughter. If there are ways that they can still mother or father you, even in their decline, even with their disabilities, soak them up.”