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The Vincristine Drug Shortage: A Medical Crisis for Childhood Cancer Families

The Vincristine Drug Shortage: A Medical Crisis for Childhood Cancer Families

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UPDATE: Because vincristine is such a lifesaving medicine, Teva has decided to re-introduce the product and plan to manufacture it in their U.S. plant, which provides the fastest route to market. This drug will be available for patients in the U.S. as early in 2020 as possible. Thank you, Teva, for listening to our concerns and making childhood cancer a priority. Read their full statement here.


If your child is currently fighting a childhood cancer diagnosis, the last thing you want to hear is that one of the drugs required to beat that cancer is currently unavailable. Yet that is exactly what many families are being told, due to a nation-wide shortage of a critical chemotherapy drug known as Vincristine.

This is a frightening situation for childhood cancer families across the country. Together with the Alliance for Childhood Cancer Drug Shortages Working Group and the Children’s Oncology Group, ACCO is working with the U.S. FDA to find an immediate resolution to this crisis, as well as develop long-term solutions to prevent future shortages. Because no child should have to go without the critical medications they need to survive childhood cancer.

What is Vincristine?

If your child has been in treatment for childhood cancer, it is likely that the sterile generic injectable Vincristine played a role in that treatment; this critical chemotherapy drug has been included in nearly every treatment protocol for childhood cancer, as well as some adult cancers, for the past five decades.

Cancer starts when abnormal cells in the body grow and divide too quickly. Vincristine is so effective in the fight against childhood cancer because it slows or stops this abnormal replication. Unfortunately, there is no alternative or recommended substitute for Vincristine available on the market today, making the current shortage of this important drug a true crisis.

Why is there a shortage of the Vincristine drug?

The current shortage of Vincristine has its roots in two specific events:

  1. The pharmaceutical company Pfizer, the primary manufacturer and distributor of 97% share of Vincristine for the U.S. market, encountered a quality control issue in its production line, forcing the company to curtail, at least temporarily, its production of Vincristine.
  2. Earlier this year, Teva, the second of the two manufacturers of Vincristine decided to stop distribution of the generic drug to the U.S. due to their small 3% market share. They communicated with the FDA at the time and were assured that their leaving the market would not result in a shortage of the drug. Generic drugs have a very small profit margin as compared to patented name-brand drugs making it not always possible to continue production. Teva has stepped back in to help reduce the shortage as quickly as possible.

How will this shortage affect kids with cancer currently being treated?

The COG guidance is that if a site does not have sufficient drug available, then children should not be enrolled onto a study. For children who were already participating, sites were given guidance as to how best to manage the research component of care due to the shortage. At some centers, this has led to the rationing of Vincristine and some children had their doses delayed or were possibly missed.

What should I do if my child is currently using Vincristine?

If your child is currently undergoing chemotherapy that includes Vincristine, talk to your child’s oncology team about how this shortage could impact his or her treatment. Although there is relatively little specific data about how missed and/or skipped doses may impact outcomes, your child’s oncology team is best suited to help you understand the implications of this crisis in terms of your child’s specific diagnosis and treatment plan.

Recently, the FDA released a report Drug Shortages: Root Causes and Potential Solutions where they discuss underlying factors contributing to ongoing drug shortages (not just Vincristine) and potential solutions. Find the full report at this link.

We also encourage you to contact the FDA at drugshortages@fda.hhs.gov and cc ACCO’s Director of Government Affairs and External Relations, Jamie Bloyd at jbloyd@acco.org. The FDA will use the information you provide to track the shortages and distribute available resources. Only those impacted by this issue should use this email; it should NOT be used for calls to action or for general complaints about the shortage.

How can I help?

Without changes to our current healthcare system, we fear that this crisis will not be the last. We need your help to ensure that no family ever has to learn that the medicine they need to treat their child is simply not available. We are working with representatives in government, as well as with our allies in the childhood cancer community, to push towards comprehensive federal legislation designed specifically to prevent this type of shortage in the future.

Make your voice for change heard!

Join our advocacy network to follow the latest developments in this critical issue and learn more about how you can help us promote important legislative change. Join our mailing list today.

Join Our Mailing List

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

7 Ways You Can Help Kids With Cancer This Fall

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While September is “Childhood Cancer Awareness Month”, raising funds and awareness for childhood cancer can happen all-year-round! Fall lends itself perfectly to all types of gold-themed fundraising. All you need is a little creativity and a big heart, and your Fall fundraiser is sure to be a huge success!

Here are 7 fun and easy fundraising ideas for Fall:

  1. Fall is the perfect time to get cozy in your most comfy PJs. So why not get comfy and cozy for kids with cancer? Host a PJammin® Party at your school or place of work and donate the proceeds to kids with cancer!
  2. It’s football season, and a great time to rally your team around a great cause: helping kids with cancer! Ask your local football team to honor kids with cancer by wearing gold laces (provided by ACCO) during a game, while you sell gold-themed treats and fill a donation bucket. 
  3. October is pumpkin month! Who doesn’t love painting pumpkins and making beautiful fall crafts? Host a pumpkin painting party or a craft night where the theme of the evening is gold! Be sure to stock lots of gold paint and craft supplies; ask for small donations for kids with cancer. 
  4. Do you or someone you know love to bake at harvest time? Organize a Pie Day at work where you sell slices of delicious homemade pie and donate the proceeds to kids with cancer! Not a baker yourself? Ask for help from friends or ask local bakeries to donate to your Pie Day event. 
  5. Use your fingers and toes to honor kids with cancer! It’s easy: host a gold-themed manicure/pedicure party! Provide gold-colored nail polish and ask everyone to paint their nails gold in honor of kids with cancer in exchange for a small donation to help kids with cancer.
  6. Tired of the same old Halloween gags? Why not host a Go Gold Halloween Party? Ask party-goers to forego the creepy Halloween costumes and dress up in gold instead! Gold dresses, gold hats and ties, gold shoes, gold jewelry: see how imaginative your friends can be for kids with cancer. 
  7. Give a treat when you “trick or treat” this year! That’s right: decorate your Trick or Treat bag or sack with Gold Ribbons and ask for a small donation instead of (or in addition to!) candy. And be sure to give your own “treat” back: pass out gold silicone bracelets, gold ribbon stickers, and other gold-themed commemorative items each time you get a donation for kids with cancer! 

At ACCO, our goal is to help you help kids with cancer! And whether you use one of our ideas or come up with an awesome idea of your own, it’s the kids with cancer and their families who will reap the benefits! 

Register your fundraiser with ACCO to take advantage of our complimentary awareness items and amazing program support.

PJammin® for Kids with Cancer

Go Gold® for Kids with Cancer

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

6 Facts About Childhood Cancer

How to Help Kids with Cancer During Childhood Cancer Awareness Month

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September is Childhood Cancer Awareness Month, and it’s a great time to get involved on behalf of children fighting childhood cancer!  

There are so many different ways for you to help kids with cancer! No matter how you decide to get involved, the important thing to know is that your actions matter to children and families fighting childhood cancer. 

Here are five ways you can help kids with cancer during Childhood Cancer Awareness Month:

1. Make a donation

Childhood Cancer Awareness Month is a great time to donate to ACCO’s ongoing effort to develop and offer free resources to families facing a cancer diagnosis. Our resources are designed to help children, teens, siblings, and families cope with the medical, emotional, and psychological hardships of childhood cancer. Thanks to your help, we can continue to offer all our resources free of charge to families facing a cancer diagnosis. 

Donate

2. Go Gold for Kids with Cancer®

Gold is the color of the month during September and what better way to raise awareness about childhood cancer than to incorporate the gold ribbon into your fundraiser! All you need to do is select your theme–a sports night, a dance party, a fashion show, a bake sale–and highlight the color gold. As a special bonus, ACCO will provide gold-themed awareness items to help you paint your community GOLD for Childhood Cancer Awareness Month.

Find more ideas for Go Gold fundraisers here!

3. Host a PJammin® Party

Pjammin event

Kids in treatment for childhood cancer can spend weeks–even months–in the hospital. PJammin® events help people in your community stand in solidarity with kids who often live in their pjs at the hospital, while raising money for a great cause. Work with your school or place of work to organize a day for everyone to show up in their pjs in exchange for a donation. It’s easy, it’s fun, and it’s a great way to raise awareness during Childhood Cancer Awareness Month!

PJammin® for Kids with Cancer

4. Join the Take a Pop, Share a Smile Program

For kids with cancer, a frozen pop can be more than just a tasty treat; it can also help ease the discomfort of some of chemo’s side effects. Through our Take a Pop, Share a Smile program, our partner JelSert provides a free special freezer and unlimited supply of ice pops to hospitals across the U.S. Help us expand our program by requesting a freezer for your local children’s hospital! 

Request a Freezer

5. Advocate for Kids with Cancer

ACCO and the childhood cancer community has a goal for every state to proclaim this month — September — Childhood Cancer Awareness Month. We need your help! Join forces with us and make your voice heard! The process is easy: simply visit our Voter Voice Action Center where ACCO has provided a pre-written email for you to send to your governor. It only takes a few minutes to make a powerful statement on behalf of children fighting childhood cancer!

Proclaim September as Childhood Cancer Awareness Month in your state

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

About Childhood Non-Hodgkin Lymphoma Cancer – Prognosis and Outlook

Key Statistics Relating to Childhood Non-Hodgkin Lymphoma (NHL)

Non-Hodgkin Lymphoma (NHL) is an aggressive and diffuse type of cancer that grows within a child’s immune system, specifically within a type of white blood cell known as a lymphocyte. Non-Hodgkin Lymphoma accounts for about 5% of all childhood cancers (Hodgkin Lymphoma accounts for around 3% of all childhood cancers). In general, the risk of NHL decreases with age; it is uncommon in children under the age of 3 and over the age of 14. It is more commonly diagnosed in boys than girls. In children, there are three distinct types of NHL: Lymphoblastic lymphoma (LBL), Burkitt lymphoma (also called small, non-cleaved cell lymphoma), and large cell lymphomas. Burkitt lymphoma accounts for about 40% of all NHL diagnoses in the United States.

IMG_2037These general statistics are interesting but of course the most important statistic for many people is the long-term survival rate for children with NHL. In other words, most people want to know “what is the expected life span of someone with Non-Hodgkin Lymphoma?” Generally speaking, oncologists don’t talk about “curing” childhood cancer; instead, they utilize something called the 5-year survival rate. This key statistic refers to the percentage of children who are still alive five years after their treatment is complete. For most children with NHL, this type of cancer is unlikely to return once a child has been “cancer free” for five years (although this does not address the risk of secondary cancers stemming from the original cancer treatment).

As always with statistics, however, it is important to look at them with a degree of caution. First, and most importantly, a general statistic can never predict what will happen with one specific child. Each child’s prognosis depends heavily on their unique diagnosis. Second, by definition, the 5-year survival rate looks at children who completed treatment at least five years ago, if not longer. Fortunately, research into new and better treatment options for NHL and other types of childhood cancers is progressing more rapidly than ever before, so today’s treatment options may be more effective than those available five or more years ago.

Prognosis of Non-Hodgkin Lymphoma by Type

The good news is that, in general, NHL responds well to chemotherapy; in other words, chemotherapy is usually able to kill most NHL cells fairly quickly. Moreover, as research into different types of drugs and different combinations of drugs progresses, oncologists are finding even more effective methods of targeting NHL. However, the specific prognosis of each child will depend on the type of NHL they have been diagnosed with, the stage of the cancer, how well it responds, and the general health of the child. Your child’s oncologist will be able to provide you with an answer to this question that is specific to your child.

The prognosis for the three main types of Non-Hodgkin Lymphoma in children is broken down thusly:

  • Lymphoblastic lymphoma (LBL): Like Acute lymphoblastic leukemia (ALL), LBL grows in immature lymphocytes known as lymphoblasts. LBL responds well to intensive chemotherapy, and the 5-year survival rate for Stage I or II LBL is greater than 90%. The 5-year survival rate for Stage III or Stage IV LBL is generally greater than 80%.
  • Burkitt lymphoma (small, non-cleaved cell lymphoma): Burkitt lymphoma starts in the abdomen, and can sometimes grow in the form of a tumor; therefore, surgery in addition to chemotherapy may be required. Burkitt lymphoma is one of the fastest-growing cancers and must be treated very aggressively. As with LBL, Stages I and II can be treated very successfully, with long-term survival rates greater than 90%, while the long-term survival rate for Stages III and IV is between 80 and 90%.
  • Large cell lymphomas: Large cell lymphomas grow from mature T or B cell lymphocytes. Generally speaking, this type of NHL grows more slowly than other lymphomas and is less likely to spread to the bone marrow or brain. There are two main subtypes: anaplastic large cell lymphoma (ALCL) and diffuse large B-cell lymphoma (DLBCL). Again, for Stages I and II, the 5-year survival rate is greater than 90%, and ranges between 80 and 90% for more advanced stages (III or IV). The long-term survival rate for ALCL, however, is between 60 and 75%.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Together, we can make a difference. Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

Treatment Options for Childhood Non-Hodgkin Lymphoma (NHL)

Childhood Non-Hodgkin Lymphoma Cancer Treatment

 

Childhood Non-Hodgkin Lymphoma Cancer TreatmentNon-Hodgkin Lymphoma (NHL) forms within the body’s immune system, specifically within a type of white blood cell called a lymphocyte (B cells or T cells). Although there are three distinct types of NHL in children, there are two common characteristics of this particular form of cancer that must be taken into account when developing an appropriate treatment plan. First, NHL in children is almost always considered “high grade”, meaning that it is likely to grow quickly and aggressively. Second, NHL in children is considered diffuse, meaning it is likely to be found throughout the body. Because of these two characteristics, most oncologists start with the assumption that there are more cancerous cells present than can be detected with imaging and blood tests.

Because of the diffuse nature of Non-Hodgkin Lymphoma, chemotherapy (often called “chemo” for short) is usually the most effective treatment option. Chemotherapy involves targeting the cancerous cells with specific combinations of anti-cancer drugs. In most cases, the drugs are administered in pill form and/or delivered directly into the blood stream through an IV in order to kill cancerous cells throughout the body. In some cases, chemotherapy drugs may be administered directly into the spinal fluid (called intrathecal chemo) in order to target cancer cells that may have spread into the brain and/or spinal cord. NHL usually responds well to chemotherapy.

Although chemotherapy is—in general—the preferred treatment option for children with NHL, the specific combination and dosages of chemo drugs and the duration of treatment are unique to each child. The intensity of treatment will depend in large part on the type and stage of the lymphoma, as well as the general health of the child and how well the lymphoma responds to treatment. Generally speaking, Stage III and Stage IV NHL will require more intensive chemotherapy than Stage I or II NHL, and may involve some limited radiation therapy as well. Except in the case of Burkitt lymphoma, where surgery may be used to remove a tumor growing in one specific area of the body, surgery is almost never effective against this type of diffuse cancer, and therefore only rarely utilized as part of the treatment plan.

About Chemotherapy for Non-Hodgkin Lymphoma

Chemotherapy treatment for Non-Hodgkin Lymphoma is usually administered in three distinct phases.

  • Induction: The initial phase of chemo is designed to eliminate 99% of cancer cells in order to achieve “remission” (“remission” is not the same as a “cure”). Induction usually lasts for about a month—with daily and/or weekly treatments—and can be extremely intense, especially for Stage III and Stage IV diagnoses.
  • Consolidation (also called intensification): Often even more intense than the initial induction phase, consolidation is intended to kill any remaining cancerous cells and inhibit the growth of new, drug-resistant cancer cells. This phase of treatment usually lasts one to two months, or longer if necessary.
  • Maintenance: If the lymphoma responds well to induction and consolidation, most children will undergo a maintenance phase to prevent the cancer from returning. The maintenance phase is usually much less intensive, involving the administration of chemotherapy for brief periods every 4-8 weeks or so. Maintenance can last up to 2 years, or perhaps even longer, depending on the intensity of the treatment plan and how well the lymphoma responds to treatment.

Because Non-Hodgkin Lymphoma is considered a “high grade” type of cancer that grows quickly and aggressively, it is important to start chemotherapy as soon as possible after diagnosis. Moreover, if the lymphoma is diagnosed as Stage III or Stage IV where the cancer cells are growing and replicating quite quickly, chemotherapy will be more intensive, requiring short treatment cycles with less rest in between each cycle. Stage III and Stage IV cancers will also almost always require intrathecal chemotherapy, and may involve radiation therapy as well, especially if cancer cells have definitely been found in or near the spinal cord and/or brain.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Together, we can make a difference. Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

How to Get Involved with The American Childhood Cancer Organization

Who is the American Childhood Cancer Organization? 

The American Childhood Cancer Organization, also known as ACCO, is the oldest and largest grassroot childhood cancer organization. Started by a passionate and devoted network of parents and advocates dedicated to giving children and their families facing a childhood cancer diagnosis a voice, ACCO has helped over half a million kids and families facing childhood cancer.

Why do we believe so strongly that children with cancer need a voice? Because not very long ago, childhood cancer was almost always fatal and it was not talked about it. Candlelighters (as ACCO was originally called) has been a strong force behind how we, as a society, support children with cancer and their families these days. 

Yet our work is not done. Childhood cancer remains the number one disease killer of children in the U.S. and the second leading cause of childhood death after unintentional accidents. While outcomes have improved drastically, today’s treatment options remain highly toxic and most childhood cancer survivors face a lifetime of health problems stemming directly from cancer treatment. And most importantly, the cancer journey continues to be long and difficult—physically, financially, and emotionally—for children and families alike. 

What does ACCO doSo here at ACCO, we continue our multifaceted efforts to empower childhood cancer families and give childhood cancer warriors a voice across the country and around the globe! 

What Does ACCO Do

Our mission is a straightforward one: to advocate for and support children and their families throughout their cancer journey, from diagnosis to survivorship. 

  • We provide free resources designed to help children and families navigate childhood cancer 

Our specially-developed resources, such as Cozy Cat, Medical Play Kit, Comfort Kit, and Hero Beads, as well as a vast library of books and educational materials, help children, siblings, and families understand and navigate the complex physical and emotional challenges of a childhood cancer diagnosis.

Our resources are offered free of charge to families facing childhood cancer. Order your resources today. 

  • We advocate to make childhood cancer a legislative priority 

ACCO is dedicated to shaping and promoting state-level, national, and international policies that make childhood cancer a child health priority, including legislation that promotes research into more effective and less toxic treatment options and improved access to affordable health care in the U.S. and abroad.

Join us in our advocacy efforts.

  • We promote greater awareness and understanding of childhood cancer

Did you know that ACCO designed the gold ribbon as THE symbol for childhood cancer? We are proud of the success our efforts have had bringing childhood cancer to the forefront of public awareness through Go Gold!® campaigns such as the Gold Ribbon, as well as the dedication of September as Childhood Cancer Awareness Month. 

Help spread awareness with a Go Gold event or fundraiser!

  • We facilitate fundraising for families seeking to give back to the childhood cancer community

Our Founding Hope program empowers families to honor their child with a fundraising program – it’s like having your own non-profit without the pressure of running one. With your own webpage to raise money in your child’s name, you also have the freedom to choose where the money is allocated. 

Learn more about the Founding Hope program and how to start one.

Why We Do What We Do

Why is our mission so important? Because kids can’t fight cancer alone!®

And we can’t do it alone either!  Thank YOU for helping us ensure kids with cancer live long, healthy lives.

Whether you know a child with cancer, have been moved by a child’s story, or simply want to help, there are so many more ways you can get involved outside of the ones listed above! For more information on ways to help, visit: www.acco.org/get-involved

Together, we can make a difference.
Donate today because kids can’t fight cancer alone
®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

Risk Factors, Causes, and Prevention of Non-Hodgkin Lymphoma in Children

What Causes Non-Hodgkin Lymphoma in Children?

i-4BrMB6x (1)Currently, scientists do not know what causes non-Hodgkin lymphoma in children. Non-Hodgkin lymphoma is a type of cancer associated with the immune system because it begins in a type of white blood cell called a lymphocyte. Normally, lymphocytes, like other healthy cells, grow, replicate, and then die. For some reason, DNA changes within certain lymphocytes cause them to grow into cancerous cells, which then divide into more cancerous cells. Why these DNA changes lead to this change is unknown, however.

Because non-Hodgkin lymphoma is associated with the immune system, there is a link between the development of NHL in some children and a compromised immune system such as associated with Epstein-Barr Virus or HIV infection. EBV, for instance, infects B lymphocytes, potentially causing them to have an increased risk of gene changes associated with NHL. However, it is important to note that the vast majority of children here in the United States who are diagnosed with NHL do not have EPV or a compromised immune system. What causes NHL in these children is unknown.

What are the Risk Factors for Non-Hodgkin Lymphoma?

A “risk factor” is anything that may impact a child’s changes of developing cancer. For example, in adults, risk factors for cancer sometimes include lifestyle choices such as smoking and tobacco use. For children, however, lifestyle choices are not believed to be linked to the development of cancer, so if there are any known risk factors for childhood cancers, they are usually genetic or otherwise immutable.

The most common risk factors for non-Hodgkin lymphoma include:

Age, gender, and race: although scientists to do not understand why, NHL is more common in older children than younger children. It is more common in boys than girls and more common in white children than black children.

Weakened immune system: a compromised immune system has been linked with a higher risk of developing childhood NHL. The immune system may be compromised due to: an underlying genetic condition (such as severe combined immunodeficiency syndrome (SCID), common variable immunodeficiency, Ataxia-telangiectasia, or X-linked lymphoproliferative syndrome); an organ transplant involving immuno-suppressive drugs required to prevent organ rejection; and/or HIV/AIDS.

Radiation exposure: High levels of radiation exposure—such as survivors of atomic bombs or nuclear reactor accidents—have an elevated risk of developing some types of cancers, including NHL. Lower levels of radiation such as from x-rays are not known to be linked to the development of NHL; however, physicians generally try to avoid any unnecessary radiation exposure for pregnant women and infants/young children just in case. Radiation treatment for other cancers also involves an elevated risk of NHL and other second cancers; however, in these cases, NHL usually develops later in life as adult NHL.

Epstein-Barr Virus (EBV): While the linkages are not well understood, individuals with Epstein-Barr Virus have a higher risk of developing NHL. This is especially true in Africa where EBV has been linked to almost 90% of Burkitt lymphoma diagnoses. It has been linked with about 15% of Burkitt lymphoma here in the United States and is also linked to post-organ transplant lymphomas.

Can Non-Hodgkin Lymphoma Be Prevented?

There is a simple answer to this critical question: no. Most children diagnosed with non-Hodgkin lymphoma have no risk factors or lifestyle issues that could have been altered or changed in any way to prevent the development of this disease. While it is entirely natural and very common to search for a cause or something to blame when a child is diagnosed with NHL (or any type of cancer), it is important that parents and guardians understand that there is nothing that they could have done differently to prevent this disease.

There are two notable exceptions. First, a small percentage of diagnoses are associated with a compromised immune system such as HIV infection. HIV-positive mothers are encouraged to take active steps during and after pregnancy to reduce the risk of passing HIV along to their children. Second, NHL may develop as a second cancer stemming from a prior cancer treatment or immune-suppressing drugs taken to facilitate an organ transplant. Obviously, in these cases, the small risk of developing NHL in the future must be weighed against the need to treat a potentially life-threatening disease in the present.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

Together, we can make a difference.
Donate today because kids can’t fight cancer alone
®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

About Childhood Non-Hodgkin Lymphoma Cancer – Detection and Diagnosis

About Childhood Non-Hodgkin Lymphoma (NHL)

i-Bz6DWc2Non-Hodgkin Lymphoma (NHL) is a specific type of cancer that begins in the body’s immune system, in cells known as lymphocytes. While there are a variety of different classifications of NHL—usually based on key features such as the size, shape, and growth pattern of the cancerous cells—most children are diagnosed with one of three distinct types of NHL (the other types are mainly diagnosed in adults). While all three types of childhood NHL are considered “high grade” (growing aggressively) and diffuse, they are all treated somewhat differently.

The three types of Non-Hodgkin Lymphoma in children are:

  • Lymphoblastic lymphoma (LBL): LBL begins in very young lymphocytes known as lymphoblasts, similar to acute lymphoblastic leukemia (ALL). In most cases, LBL develops from T cells (precursor T-lymphoblastic lymphomas) in the thymus, but occasionally in the tonsils or lymph nodes. B-cell NHL (precursor B-lymphoblastic lymphomas) can develop in lymph nodes in the chest or neck. LBL is an aggressive, quickly growing cancer that can cause breathing problems.
  • Burkitt lymphoma (small, non-cleaved cell lymphoma): Burkitt lymphoma accounts for about 40% of all childhood NHL diagnoses in the United States (primarily in boys between the ages of 5-10). In most cases, Burkitt lymphoma starts in the abdomen. In certain parts of Africa, Burkitt lymphoma accounts for nearly all NHL diagnoses and more than 50% of all childhood cancers, and usually forms in the jaw or face. Burkitt lymphoma is one of the fastest-growing cancers and must be treated quickly and aggressively.
  • Large cell lymphomas: Large cell lymphomas grow from more mature T or B cells. While this type of lymphoma can develop almost anywhere, it grows more slowly than other lymphomas and is unlikely to spread into the bone marrow or the brain. It is more common in older children and teens. There are two main subtypes: anaplastic large cell lymphoma (ALCL) and diffuse large B-cell lymphoma (DLBCL).

Detection and Diagnosis of Non-Hodgkin Lymphoma

In most cases, diagnosis of non-Hodgkin lymphoma in children comes when a parent or guardian notices unusual symptoms of illness or concern. Although in most cases, these types of symptoms are caused by any number of common childhood illnesses or infections, if your child’s pediatrician believes that lymphoma or another type of cancer may be present, he or she will recommend that you visit an oncologist or other specialist for further diagnostic testing. In most cases, NHL will be diagnosed and classified with a biopsy, in which some or all of the cancerous cells are surgically removed and examined under a microscope.

Childhood NHL can cause a variety of signs and symptoms of illness, usually stemming from where in the body the cancer is growing. Some of the most common symptoms of NHL include:

  • Enlarged lymph nodes (lumps under the skin that can be seen or felt) usually in the neck, underarm, collar bone, or groin. They are generally not painful (unlike enlarged lymph nodes resulting from infection).
  • Swollen abdomen caused by a tumor in or near the belly or a build-up of fluid because of a tumor. Other signs that of a lymphoma in the abdomen include feeling full after consuming only a small amount of food, pain, nausea, and/or vomiting.
  • Shortness of breath or cough caused by a lymphoma growing in the thymus or lymph nodes in the chest.
  • Swelling in the face, neck, arms, and upper chest may be caused by a lymphoma pressing on artery and veins near the heart, such as the superior vena cava. Other symptoms of so-called SVC syndrome include trouble breathing, headaches, dizziness, and loss of consciousness.

In addition, NHL can cause so-called B symptoms, which are generalized symptoms but often indicate the presence of an aggressive and quickly-growing lymphoma. B symptoms include:

  • Fever and/or chills
  • Unexplained weight loss
  • Night sweats
  • Fatigue (feeling very tired)

Finally, NHL may create symptoms stemming from too few health blood cells (because the lymphoma has spread to the bone marrow and is forcing out healthy blood cells). These symptoms include severe and/or frequent infections, easy bruising and/or bleeding, and fatigue, pale skin, and anemia.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

Together, we can make a difference.
Donate today because kids can’t fight cancer alone
®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

After Treatment – Living as a Childhood Hodgkin Lymphoma Cancer Survivor

After Treatment: Living as a Childhood Hodgkin Lymphoma Survivor

IMG_2186The good news is that for most patients, the long-term prognosis for childhood Hodgkin lymphoma is excellent. For patients who have been through months or even years of difficult chemotherapy and radiation therapy, it is easy to see the final treatment—the declaration of “cancer free” or even “cured”—as the final destination of a long journey. Survivorship, however, is in fact its own journey, and one that can also be extremely challenging, both physically and emotionally.

For many survivors of childhood Hodgkin lymphoma, the emotional impact of survivorship—especially in the short term—can be two-fold. First, reintegrating back into a “normal” life is not always as easy as it sounds. For adolescents and young adults who have been forced away from school and social activities, managing the pressures of returning to academics and reestablishing friendships can be exceedingly and surprisingly stressful. Second, both survivors and their families must cope with the fear that the cancer will return (recurrence). This anxiety is extremely common among cancer survivors, and can be especially difficult to cope with during routine follow-up scans and exams.

Survivorship also comes with a lengthy list of potential long-term physical side effects, also known as “late effects”, which may result from the chemotherapy and radiation required to treat Hodgkin lymphoma. While treatment mechanisms are improving significantly, with more targeted treatments and smaller and more effective dosages, the risk of serious and long-term side effects has not yet been eliminated. It is critical that survivors follow a long-term follow-up program, potentially for the rest of the child’s adult life.

Some of the more common late effects include:

  • Second cancers: Hodgkin lymphoma survivors are a higher risk for developing a second type of cancer later in the life, usually relating to the chemotherapy or radiation needed to treatment the original cancer. Chemotherapy has been linked to the development of blood cancers such as leukemia, while radiation therapy has been linked to cancers in the organs adjacent to the treated area. For instance, young women who undergo chest radiation are more likely to develop breast cancer; chest radiation has also been linked to a higher risk of lung cancer. While second cancers cannot be prevented, it is important to maintain a healthy lifestyle, avoid known cancer-triggers such as tobacco use, and follow an aggressive early-screening schedule as appropriate.
  • Fertility problems: Cancer treatments in adolescents and young adults can cause long-term problems relating to fertility. For men, chemotherapy can temporarily or even permanently impact sperm production, while for women the late effects can be even more complex, affecting both the menstrual cycle and/or the reproductive organs. Luckily, steps can be taken in advance of treatment—such as banking sperm or surgically moving ovaries—to reduce the long-term impact on reproductive capabilities.
  • Increased risk of infection: Although the mechanisms are not yet well-understood, Hodgkin lymphoma survivors may have a compromised immune system, leaving them more vulnerable to bacterial and/or viral infections. This is especially problematic for individuals who have had their spleen removed (significantly less common now than in the past). Thus, it is especially important for survivors to get regular flu shots and other standard vaccines, and in some cases even get vaccines for certain bacteria.
  • Organ problems: Depending on the intensity of chemotherapy and the intensity and location of radiation, survivors can develop health problems in adjacent organs that may have been adversely impacted by treatment. The most common concerns are usually thyroid problems (hypothyroidism), heart disease, stroke, and lung damage.

Obviously, the goal of any treatment program is to maximize the chances of recovery while minimizing the risk for short- and long-term side effects. Despite rapid improvements in available cancer treatments, we have not yet found a way to fully eliminate these risks. Yet there are several steps survivors and their families can take to monitor for and identify late effects as early as possible, thereby increasing the likelihood that they can be successfully treated.

  • Develop a survivorship plan that includes a regular schedule of follow-up visits and early screening tests, a list of potential late effects, and a wellness plan.
  • Stick to all scheduled tests, exams, and screenings, even if they cause anxiety about recurrence.
  • Alert your physician to any health problems or concerns immediately, even if they seem insignificant. Unfortunately, many late effects cannot be diagnosed until symptoms become apparent.
  • Maintain accurate and up-to-date health records. As you see new physicians throughout your life, it is important that they have access to your medical history and all cancer treatments.
  • Maintain health insurance. Especially for young adults, the temptation to save money and go without can be overwhelming. Yet late effects can crop up suddenly and treatment can be expensive without insurance.

More about Childhood Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

Together, we can make a difference.
Donate today because kids can’t fight cancer alone
®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit: