Chronic Lymphocytic Leukemia Archives

Chronic lymphocytic leukemia (CLL) is a typically slow-growing cancer which begins in lymphocytes in the bone marrow and extends into the blood. It can also spread to lymph nodes and organs such as the liver and spleen.

CLL develops when too many abnormal lymphocytes grow, crowding out normal blood cells and making it difficult for the body to fight infection.

More resources for Chronic Lymphocytic Leukemia (CLL)  from Patient Empowerment Network.

10 Ways of Thriving After Cancer

First and foremost, “surviving” cancer is amazing. After all, cancer is one of the deadliest diseases in the world! So, if you are a survivor, you are indeed worthy of praise. 

There are many types of cancers out there. One thing that they all have in common is that they are a result of uncontrolled growth of abnormal cells anywhere in a body. Early detection of cancerous growth results in a good prognosis as there is nearly no definitive cure for any form of cancer at its late stages.

Again, whether yours was at its late-stage or not and you survived, you are a winner! At this point, you should hold no reserve about cancer resurfacing and instead THRIVE. 

Now that you have survived cancer, the next step is reintegration back into society and doing the best you can to thrive while doing so. 

1. Battle your fear & anxiety head-on 

Long after getting cleared of cancer, survivors have to fight an emotional battle of fear and anxiety. No matter what the medical reports say about their health status, there is the seemingly never-ending fear of the cancer returning. 

This emotional turmoil is insurmountable and almost never avoidable unless you normally just have a strong will. You must quench this fear so that you can thrive.  A chat with your doctor is vital. Disclose whatever concerns you have about your health. Your doctor may even schedule frequent testing and care plans to make you feel better. 

2. Be devoted to your physical therapy sessions 

Cancer is usually for the long term. So, when the health providers eventually manage to get rid of all the cancerous growths, you may be left with a physical limitation like immobility. Such a physical limitation may make life less enjoyable, thus your doctor’s statutory recommendation for physiotherapy.

 Be dedicated to treatment sessions and work closely with the physical therapist as well as your loved ones. Don’t be afraid to ask for continued support as you heal.

3. Try a new hobby 

Don’t rush to get back to your old self before cancer. Try to enjoy the process more by finding new sports or leisure activities that fill your time. 

So, instead of getting mopey and worrying over cancer resurfacing, try knitting for a change, go golfing, try swimming! There is nothing too small or too big to try, and the main goal is to get you taken by any activity other than sitting down and getting paranoid. 

4. Consider returning to work

A defining part of getting reintegrated back into society after cancer is a career. If you were working before cancer, going back to work can help redefine your life. 

If you weren’t, try finding a new skill or going job-seeking. This gives you a sense of normalcy, but even better, it occupies your time! Remember, one of the most important ways to thrive after a battle with cancer is to not dwell on the past and simply enjoy the moment. 

5. Find intimacy with your loved ones 

There is nothing better than speaking to people who genuinely love you. Such emotional talks are sure to renew your confidence and help you build strong emotional support. If you are dating or married, it’ll help a great deal to bear your thoughts before your partner. Keeping it all inside won’t help and may even make you distant from them. 

6. If possible, start exercising

Numerous benefits accompany exercise. These range between boosting your physical endurance to giving your mental health a much-needed boost. 

Aside from that, nothing beats that sense of accomplishment that comes with completing an exercise session every day. Before starting an exercise regime, tell your doctor; and you may have him refer you to a physical therapist with knowledge of care for cancer survivors like you. 

If you are strong enough to exercise independently, start small with home workouts and build your way up to going for a walk at the park and then the gym. 

7. Make A List of Your Fears

This is on emotional terrain. Write down your deepest fears about life after cancer or what you think may prevent you from enjoying this new phase. This may include fear of the cancer returning, fears about your health overall, concerns of satisfying your partner in bed like you once did, fears of losing your job or doing poorly at it, and many more others. 

No matter how many they are, penning these fears down on paper can help you tackle them. After writing, you may even discover that some of these are so insignificant and shouldn’t be any trouble. Either way, you are tackling these problems head-on. 

8. Let go of the past 

This is an essential task if you want to thrive following a battle with cancer. Letting go of the past may be harder for people who have been fighting bouts of cancer over a significant number of years, but there is indeed nothing better than finding a new you. 

Cancer puts a dent in your mental health, so it may pose a challenge to let go of your history. If this is you, speaking to a counselor or even your doctor will be beneficial. 

9. Accept that there are going to be bad days 

It is a part of living to have good and bad days. As a cancer survivor, you can’t escape this, and you may even be more vulnerable, having battled one of the world’s deadliest diseases. As you strive to get back to normalcy, you have to realize that not every day will be good and that the process may be a lot harder than you expect. 

An optimistic attitude and never giving up are crucial to overcoming the dismay or depression that may set in when you’re not successful at something you try to do. You can also create a backup plan for such days e.g., take a walk with your partner, go to the cinema, etc. 

10. Share your experience with support groups 

There is nothing like working closely with people who have had similar experiences with you. Whether they are still battling cancer or not, speaking to others about your own experience surviving the disease will give them a ray of hope. It will equally do you a lot of good. 


Resource links: www.aicr.org, www.curetoday.com, www.inovanewsroom.org

PEN-Powered Activity Guide

A Look at Leukemia

What is Leukemia?

As with many other cancers, leukemia is not a singular disease. There are many types of leukemia, and while it is a common childhood cancer, leukemia actually occurs more often in older adults. Leukemia is the most common cancer in people under the age of 15, but it is most likely to affect people who are 55 or older. There are more than 60,000 cases of adult leukemia diagnosed each year, and it is more common among men than women. 

Leukemia is a broad term that describes cancer of the blood or bone marrow. It starts when the DNA of developing blood cells are damaged and the bone marrow makes abnormal cells. The abnormal blood cells are the leukemia cells which grow and divide uncontrollably. Unlike healthy cells that follow a life cycle, the leukemia cells don’t die when they are supposed to so they continue to build up, eventually overcrowding the blood. They crowd out normal white blood cells, red blood cells, and platelets so those normal cells can’t grow and function. Eventually, there are more cancer cells than healthy cells in the blood. The type of leukemia is determined based on which blood cells are affected by the abnormal cells. Leukemia usually affects the white blood cells, called leukocytes, but can occur in other blood cells. There are four main types of leukemia: chronic, acute, lymphocytic, and myelogenous.

Leukemia that grows slowly is called chronic leukemia. The cancer cells form very slowly so the body can also continue to form healthy cells, but over time the cancer cells continue to grow and the leukemia worsens. 

Acute leukemia grows very quickly and gets worse really fast. It has been identified as the most rapidly progressing cancer, and it can develop and grow in a matter of days or weeks.

Lymphocytic leukemia forms in the part of the bone marrow that makes lymphocytes, which are white blood cells that are also immune cells. Chronic lymphocytic leukemia (CLL) is most common in older adults and makes up about 25 percent of adult leukemia cases. It is more common in men than women and is very rare in children. Acute lymphoblastic leukemia (ALL) also affects older adults, but children younger than five have the highest risk of developing it.

Myelogenous leukemia forms in the bone marrow cells that produce blood cells, rather than forming in the actual blood cells. Chronic myelogenous leukemia (CML) accounts for about 15 percent of all leukemia cases in the United States. CML develops mostly in adults and is very rare in children. Acute myelogenous leukemia (AML) is a rare cancer that develops quickly with symptoms of fever, difficulty breathing, and pain in the joints. It can be caused by environmental factors, and develops more often in adults than children, and more often in men than women.

There are also several less common types of leukemia. Most of these types are chronic, and each year in the United States, about 6,000 cases of these less common leukemias are diagnosed.

  • Chronic myelomonocytic leukemia (CMML) develops from myeloid cells.
  • Juvenile myelomonocytic leukemia (JMML) is typically found in very young children and is another type of myeloid leukemia.
  • Acute promyelocytic leukemia (APL) is a subtype of AML.
  • Hairy cell leukemia is slow growing, chronic, and makes too many B cells that appear hairy wen viewed under a microscope.

Leukemia Possible Risk Factors

There are several risk factors linked to leukemia. There are environmental factors and genetic reasons why some people might develop leukemia. Some of the factors can be controlled while others can not. Age, smoking history, and exposure to hazardous chemicals are all possible risk factors. Other risk factors may include exposure to chemicals or medical treatments, personal health history, and family history. Some of the possible risk factors need more study to determine a definite link to leukemia, but being aware of your potential risk is important.

If you were exposed to chemotherapy or radiation therapy for another cancer you have a higher chance of getting leukemia later in life. Also, children who took medications to suppress their immune systems, such as after an organ transplant, may develop leukemia. Exposure to chemicals such as benzene and formaldehyde, often found in cleaning products, hair dyes, and embalming fluid, may also increase your risk of developing leukemia. Smoking and exposure to workplace chemicals like gasoline, diesel and pesticides could also be a risk factor.

There are several syndromes, conditions, and genetic disorders that can also increase leukemia risk. Li-Fraumeni syndrome, a hereditary disorder, is linked to leukemia, and children with Down syndrome have a two to three percent increased risk of developing acute myeloid or acute lymphocytic leukemia. Other genetic disorders that increase leukemia risk are Fanconi anemia, and dyskeratosis congenita (DKC). The inherited immune system conditions ataxia-telangiectasia, Bloom syndrome, Schwachmai-Diamond syndrome, and Wiskott-Aldrich syndrome also increase the risk of leukemia. Risk is also increased in patients with a history of blood disorders such as myelodysplastic syndrome, myeloproliferative neoplasm, and aplastic anemia. There are also viruses, such as the human T-lymphotropic virus (HTLV-1), linked to leukemia.

Family history can also play a role in the development of leukemia. Having a sibling with leukemia is a risk factor, and having an identical twin with leukemia gives you a one in five chance of developing it yourself.

Preventing Leukemia

There are no known ways to prevent leukemia; however, being aware of risk factors and attempting to reduce them could help. Studies have linked leukemia to smoking and obesity, so quitting smoking and having a healthy body weight could help prevent leukemia. In addition, avoiding heavy exposure to dangerous chemicals might decrease your risk.

Signs and Symptoms

There are no reliable early screening methods for leukemia and, especially in chronic leukemia, the symptoms may not be very noticeable early on. Symptoms such as fatigue and fever may not be alarming at first, and could be mistakenly attributed to other causes. Acute leukemia symptoms come on faster and are typically more noticeable. All types of leukemia can have similar symptoms, but the symptoms each individual patient has can help determine the type of leukemia. Any symptoms should be checked by a doctor.

The most common symptoms of leukemia are:

  • Extreme fatigue that doesn’t respond to a good night sleep
  • Enlarged lymph nodes that are swollen and tender as a result of leukemia cells building up
  • Unexplained fever higher than 101 degrees that occurs frequently or lasts more than three weeks with no explanation
  • Night sweats that can also occur during the day, and can drench the sheets through to the mattress
  • Bruising and excess bleeding such as frequent nose bleeds caused by poor blood clotting which is also a symptom
  • Poor blood clotting is apparent when small red or purple spots, called petechiae, appear
  • Abdominal pain occurs when white blood cells accumulate in the liver or spleen
  • Bone and joint pain usually occurs in the hips or sternum where there is a lot of bone marrow that is being crowded by abnormal cells
  • Headaches and other neurological symptoms such as seizures, dizziness, visual changes, nausea, vomiting can occur due to leukemia cells in the fluid around the brain and spinal cord
  • Unintentional weight loss of five percent or more of your body weight in 12 months or less. Weight loss can sometimes be a result of having a swollen liver or spleen which can lead to loss of appetite
  • Frequent infections occur because white blood cells aren’t working properly to fight infections
  • Anemia, or iron deficiency, occurs when there is a lack of hemoglobin in the blood to transport iron in the body. Iron deficiency can cause labored breathing and pale skin. Symptoms of anemia are nausea, fever, chills, night sweats, flu-like symptoms, weight loss, bone pain, and tiredness

Complications from Leukemia

Leukemia can cause several serious complications due to the nature of the disease and treatment. Complications such as life-threatening infections can occur when white blood cells are damaged or reduced. When white blood cells aren’t fully functioning, the body can’t properly fight infections, so any infections a leukemia patient gets, such as urinary tract infections or pneumonia, can become very serious. Low platelet counts make bleeding in areas such as the brain, the lungs, and the stomach or intestines very dangerous, while high white blood cell counts can cause leukemia cells to spill over from the blood into other organs possibly causing respiratory failure, stroke, or heart attack.

There are other complications that are related to specific types of leukemia. Notably, the development of secondary cancers and blood cancers are more likely in CLL patients. Another complication of CLL is called a Richter transformation in which the cells can transform into an aggressive form of lymphoma. Kidney failure can be a treatment-related complication of AML or ALL.

Leukemia Diagnosis 

Leukemia can’t be diagnosed based solely on symptoms, but if leukemia is suspected, in a general exam, the doctor will look for an enlarged spleen or liver and take a blood sample. Further diagnostic testing may include a bone marrow test where a long needle is used to extract marrow from the center of a bone (usually the hip). The bone marrow test will help determine if the patient has leukemia and the type of leukemia.

Staging Leukemia

Staging is used to identify the size and location of cancer in the body. Typically cancers have four stages with Stage I usually indicating the cancer is in one location and is not very large. Stage IV indicates the cancer has grown large and spread far from the original location. Most leukemias aren’t usually staged because they are in the blood and therefore have already spread throughout the body. Instead, leukemia can be considered untreated, active, in remission, or recurrent. The exception is CLL, which can spread through the lymph nodes or the blood or bone marrow, so it does have three stages.

Treatment

The earlier treatment starts for leukemia, the better chance of remission. However, thanks to some exceptional advancements in leukemia treatment medications, doctors are often able to take the time they need to come up with the best treatment plan for each individual with leukemia, even in cases of acute leukemia if life-threatening complications are not present. When coming up with a treatment plan, doctors consider the patient’s age, overall health, and most importantly, the type of leukemia the patient has.

Leukemia treatment options vary for each type of cancer:

Watchful Waiting is used when treatment for slower growing leukemias, such as CLL, may not be necessary;

Chemotherapy is the primary treatment for AML, and sometimes a bone marrow transplant is needed;

Targeted therapies are medications that are tyrosine kinase inhibitors which target cancer cells, but don’t affect healthy cells. Targeted therapies have less side effects. Many CML patients have a gene mutation that responds very well to targeted therapy;

Interferon therapy is a drug that acts similar to a naturally occurring immune response which slows and then stops the leukemia cells. This therapy can cause severe side effects;

Radiation therapy is often used in ALL to kill bone marrow tissue before a transplant is done;

Surgery to remove the spleen may be necessary, depending on the type of leukemia;

Stem cell transplant is effective in treating CML and is usually more successful in younger patients. After chemotherapy or radiation or both are used to destroy the bone marrow, new stem cells are implanted into the bone marrow so noncancerous cells can grow.

Treatment for acute leukemia can take up to two years. It is usually done in phases. In the first phase the goal is to use chemotherapy for several weeks to kill the cancer cells and put the patient in remission. The second phase is designed to kill any remaining cancer cells using chemotherapy or stem cell transplant or both. The treatments and their side effects can be pretty harsh for older patients so researchers have been focusing on finding targeted therapies for acute leukemia, which have fewer side effects. Researchers are also hoping CAR T-cell therapy, which uses the patient’s own immune system to treat cancer, could be an eventual replacement for stem cell replacement therapy in older ALL patients. AML is more aggressive and often harder to treat, but several new targeted medications have been approved to treat AML. Researchers continue to look at other targeted therapy options and other drugs for AML.

In some cases of chronic leukemia, a stem cell transplant might be required, but the main treatment is oral medications that patients will probably take for the rest of their lives. Some research is investigating whether or not patients could potentially stop taking the medications at a certain point. 

CML treatments have really advanced and there are now several drugs that target the abnormal protein that causes CML. Thanks to these targeted medications CML patients now have a close to normal life expectancy and a 90 percent five-year survival rate. Clinical trials are looking at using targeted therapies to treat CLL as well and CAR T-cell therapies are also being considered for CLL treatment.

Recovery and Survival

Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age. Leukemia is more likely to be fatal in older patients. The average age of those who die from leukemia is 75. However, the many advances in treatment options and medications, such as targeted therapies, have created a better prognosis for many. Leukemia has a 62.7 percent five-year survival rate, and some people with leukemia can now achieve complete remission.


Sources

Felman, Adam. “What to Know About Leukemia” Medical News Today, medically reviewed August 28, 2019, https://www.medicalnewstoday.com/articles/142595. Accessed March 9, 2020.

Raymaakers, Karen. “Symptoms of Leukemia” Verywell Health, medically reviewed November 1, 2019, https://www.verywellhealth.com/leukemia-signs-and-symptoms-2252435. Accessed March 9, 2020.

“Adult Leukemia: What You Need to Know” Dana-Farber Cancer Institute, updated December 5, 2019, https://blog.dana-farber.org/insight/2019/11/adult-leukemia-five-things-you-need-to-know/. Accessed March 9, 2020.

Wang, Eunice. “How Fast Does Leukemia Develop” Roswell Park Comprehensive Cancer Center, October 4, 2018, https://www.roswellpark.org/cancertalk/201810/how-fast-does-leukemia-develop. Accessed March 9, 2020.

“Reducing Your Risk for Leukemia” Canadian Cancer Societyhttps://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/reducing-your-risk/?region=on. Accessed March 9, 2020.

“Risk Factors for Leukemia” Canadian Cancer Societyhttps://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/?region=on. Accessed March 9, 2020.

Stöppler, Melissa Conrad. “Leukemia” MedicineNet, medically reviewed September 11, 2019, https://www.medicinenet.com/leukemia/article.htm. Accessed March 9, 2020.

“Leukemia Screening” Moffitt Cancer Centerhttps://moffitt.org/cancers/leukemia/diagnosis/screening/. Accessed March 9, 2020.

“Leukemia — Patient Version” National Cancer Institutehttps://www.cancer.gov/types/leukemia. Accessed March 9, 2020.

“Cancer Stat Facts — Leukemia” National Cancer Institute Surveillance, Epidemiology, and End Results Programhttps://seer.cancer.gov/statfacts/html/leuks.html. Accessed March 9, 2020.

“Advances in Leukemia Research” National Cancer Institute, June 25, 2019,https://www.cancer.gov/types/leukemia/research. Accessed March 9, 2020.

Empowered! Podcast: Meet Andrea Conners

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.


How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbour who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”


[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerble media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Triage Cancer’s Quick Guide to Health Insurance: Employer-Sponsored & Individual Plans

2019-Health-Insurance-Employer-Individual-Plans-Quick-Guide-rev

Triage Cancer’s Quick Guide to Health Insurance: Medicare

2019-Health-Insurance-Medicare-Quick-Guide-Final

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)   

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm 

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Complete Guide To Mindfulness

Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. betterrelaxation.com

How Could CLL Treatment Advances Benefit You?

 

How Could CLL Treatment Advances Benefit You? from Patient Empowerment Network on Vimeo.

 Dr. Kerry Rogers reviews recent chronic lymphocytic leukemia (CLL) treatment advances and explains how patients may benefit from evolving research.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

Tips for Determining the Best CLL Treatment for You

  

The Truth About CLL Treatment Options

  

What You Need to Know About Developing CLL Research


Transcript:

Patricia:

Excellent. What do you think about the future – how do you feel about the future of CLL treatment? What makes you hopeful?

Dr. Rogers:                 

Oh. Well, I think a couple things. One is for CLL, in many ways, the future is now, and I think it’s only going to get better from here on out.

So, a little less than a year ago, two very large clinical trials were reported that compared our best chemotherapy to oral targeted therapy with an ibrutinib-based regimen for CLL, and the oral targeted therapy was superior in terms of something we call “progression-free survival,” which is how long people were alive without their CLL coming back or causing problems.

So, oral targeted agents, which, in general, not – everyone’s an individual, so until you try a treatment, you don’t know what’s gonna happen, but in general, have fewer side effects than chemotherapy, are better at controlling CLL than chemotherapy, so that’s what I like to put in the category of “the future is now,” and I think it’s only gonna get better. So, we’re improving on our existing oral targeted agents with next-generation drugs that have slightly different side effect profiles.

We are also studying combinations of these drugs, and oral targeted agents, and monoclonal antibodies to try to make treatment shorter, to try to get remissions deeper, to really try to improve the quality of life of people taking these therapies and not just improve how long they live with CLL.

And then, for people that really have the worst of the luck with CLL that have really high-risk findings, that don’t benefit for as long as we’d like from oral targeted therapies, that their CLL comes back after a couple years on those, I think the most exciting thing is really CAR T-cell therapies and those cellular-based therapies that aren’t donor stem cell transplant because I’ve seen people who have really benefited from those who had terrible problems from their CLL before that, and I think that’s gonna improve quality of life for a very specific subset of our CLL patients.

That is still in clinical trials for CLL, but has been in enough of them I can feel very confident that we have an idea about what the side effects are and how well it works. So, that’s really exciting. Can I add just one more thing about this before I…?

Patricia:                      

Absolutely.

Dr. Rogers:

So, I saw a consult recently for a person that was recommended to start treatment for CLL. His questions for me were, “Should I start treatment now, and what treatment should I take?” This person had never had a treatment before. So, I agreed with his oncologist, who said that he should start treatment now, and his oncologist had talked about several options, but I think with some of the changes in what we’re recommending for CLL, his oncologist had also wanted him to come see me to get a recommendation too, so it was like, “Oh, that’s great. Why don’t you go see Dr. Rogers at Ohio State and see what you should do?”

And so, one of the things he had discussed with the two oncologists in his office closer to his home were, “Oh, we have these – we have ibrutinib, it’s a really outstanding oral targeted agent, but you’ve gotta take it for a really long time, so why don’t you just take chemotherapy, because I think something better will come along?”

And, I was like, “This something better. Literally, this was demonstrated to be better than the chemotherapy. Something better did come along, and it’s this.” So, ibrutinib is better than chemotherapy. I think the idea of “Why don’t we do a less effective treatment because something better might come along?” is not true anymore. We have something better. And, he actually decided to enroll in a randomized phase 3 trial that’s gonna set the new standard of care in CLL, so he was very excited to get treatment as part of a research study. I think he decided that was actually really important to him, and he really liked what the study was.

But, it was just – it was kind of like, “Maybe something better will come along.” I’m like, “Something did.” So, that’s kind of the nice position that many people with CLL are in now. There’s still a lot of work to be done in CLL, but I just get increasingly hopeful as therapies get easier to take and more effective.

The Truth About CLL Symptoms

 

The Truth About CLL Symptoms from Patient Empowerment Network on Vimeo.

When it comes to CLL symptoms, what’s fact and what’s fiction? Dr. Kerry Rogers reviews chronic lymphocytic leukemia (CLL) symptoms and discredits common myths. Want more information? Download the Program Resource Guide here

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

How to Take Control of Your CLL Symptoms

  

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

  

Overwhelmed By a CLL Diagnosis? Key Steps to Take


Transcript:

Patricia:

Sure. Let’s talk about symptoms a little bit more. Here are a few things that we’ve heard from CLL patients. Are these fact or fiction? “I shouldn’t travel if I have CLL, since I may get an infection.”’

Dr. Rogers:

I think that is fiction. So, I’ve heard this, too, and the way I like to think about it is if you’re expected to live with CLL for a very long time, you had better go out and do the things you want to do. This is not supposed to keep you a prisoner in your house. Now, if you’re in the middle of starting some sort of more intensive treatment for it, or less intensive treatment, but you started last week, that is not a good time to go somewhere where there are no hospitals – in the middle of the Pacific Ocean or to rural Africa. So, you’ve gotta be smart about those things, but you wouldn’t go to rural Africa the week after you had a heart attack, either.

So, I think for people who are doing well, living with CLL, but aren’t needing some sort of – in situation where they need a lot of medical visits and care right now, definitely travel. And then, yes, you can get infections when you travel, but you can get infections in your own neighborhood, and I don’t think that keeping yourself only in your neighborhood or where you live is really gonna help you live any better.

You do have to be kind of smart about it. So, if you’re gonna go somewhere where there’s malaria, go to a travel clinic. Make sure that you take the advice of the travel clinic. If you’re going to Houston, you probably don’t need to do anything special. If you’re going to Central America, then you might wanna go to a travel clinic. And, as you know, most people with CLL are instructed to avoid live vaccines, so you have to tell the travel clinic, “I’m going X place. What are the recommendations? I’m not supposed to get live vaccines.” Sometimes, they can recommend low doses of antibiotics to avoid this. They have practical ways to avoid it – for ticks, if you tuck your pants into your socks.

So, being cautious and taking care not to get infections is good advice, but I don’t think it really helps people to limit their travel. Does that make sense? If someone got a stem cell transplant or something, that’s a different category. I’m talking about most people with CLL.

Patricia:                      

Sure. Well, you mentioned the problem with live vaccines and patients with CLL. Should patients with CLL get a flu shot or vaccines? Because we hear from some patients – they say they shouldn’t.

Dr. Rogers:                 

Yeah. So, because CLL is a cancer of the immune system cells – B lymphocytes – it makes the rest of the immune system function differently than in healthy individuals. So, the benefit that people get from vaccines if they have CLL is actually less, so the – if you get a flu shot, it doesn’t decrease your risk of getting the flu the same way it would for a healthy adult.

However, it’s still a good idea to do because people with CLL live at a higher risk of infection, and the way I view it is you should take every opportunity to decrease your risk for infection because influenza is curable, and if you can decrease your risk even a little bit, I would do it. Now, live vaccines are a bit of a debate because people who are immunocompromised don’t get them. So, live vaccines are a live virus similar to the on that you’re being vaccinated against.

So, examples of live vaccine are the oral typhoid vaccine, the MMR vaccine – I know we’re having measles outbreaks in some parts of the country, so MMR is kind of off the table. There is an intranasal flu vaccine that’s live. It’s very hard to get these days and uncommon to be offered. So, I recommend people get all the vaccines they’re due as long as they’re killed vaccines.

There is now a new shingles vaccine called Shingrix, which is a killed vaccine. I’ve had many patients get that. We’re not sure how well it works in CLL; probably not as well as in healthy adults, but it is safe, so if you get your hands on it – it’s been on shortage – there’s no reason not to get these things. I do think for people that have had really severe vaccine reactions that’s always an individual conversation with your doctor.

Patricia:

Yeah, it sounds like it. How about this one? “I’m not experiencing symptoms, so I don’t need treatment.”

Dr. Rogers:

That may or may not be true. So, in some cases, especially if people are in monitoring or observation for their CLL, the goal is to start treatment before you get horribly sick, right?

So, in some cases, you’ll see that the changes in the blood really predict that someone’s going to start to be really sick from CLL in the next few months. You might see their platelet count is going down, or their hemoglobin is going down a lot, and so, there’s kind of a level – so, a platelet of 100 and hemoglobin of 10-11 where you think about treatment. It’s not like, “Oh, you hit this level, you need to do treatment tomorrow,” but it’s time to plan a treatment.

Also, that is the one group of CLL patients where a bone marrow biopsy is really needed to make sure that the decrease in blood counts is CLL and not something else. Most of those people feel fine, but if your platelet count is headed down, it’s probably best to start treatment before your platelet count is below 10 and you start having bleeding symptoms. So, there are some people who are recommended to take treatment for CLL because their doctor has noticed that they’re gonna be at risk for developing problems or symptoms that might make them feel much less well.

And so, you wanna start the treatment when you’re still feeling good and before you’re having a lot of bleeding and issues. However, the majority of people who don’t have symptoms don’t need treatment for it. Quite a while ago, they did randomize people with intermediate- or high-risk CLL to either chemotherapy at diagnosis or delayed until they had one of those treatment indications I’ve been talking about, and treating it with chemotherapy just because you’ve diagnosed it did not help people live longer or better. So, if people are not having symptoms and their doctor doesn’t notice a problem, there’s no reason to treat it.

Patricia:                      

We talked a little bit how diet and exercise can help with symptoms, but can they control symptoms? Tricky question.

Dr. Rogers:                 

I’m not sure. I think that’s really individual. The thing I get asked all the time is, “What diet do I go on to make my CLL go away, or so I never need treatment?” And, there are no evidence-based diets to make your CLL go away. The coffee enema thing doesn’t work. The no-sugar thing – I’m not sure that works.

I do tell my patients to try to eat and behave as if they’re gonna be around a long time because people with CLL usually expect to live many, many years, and heart disease is still killing people in this country, so you can’t stop managing your diabetes, you can’t start eating hamburgers when you have horrible heart disease, so I think you still have to follow a regular, healthy adult diet.

Most people feel better if they eat fruits and vegetables and try to eat a well-balanced adult diet, so I think that helps pretty much everyone, even healthy adults, but I don’t have any specific diet to control CLL symptoms, although I did have one guy that said ever since he’s been eating white toast every morning, all his symptoms are much better. So, if you find something that works for you, it doesn’t matter what it is. If it’s working out for you, you should do it.

How to Take Control of Your CLL Symptoms

How To Take Control of Your CLL Symptoms from Patient Empowerment Network on Vimeo.

 From fatigue to swollen lymph nodes, Dr. Kerry Rogers discusses her approach to managing common chronic lymphocytic leukemia (CLL) symptoms.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

The Truth About CLL Symptoms

  

Fact or Fiction? CLL Treatment & Side Effects

  

Overwhelmed By a CLL Diagnosis? Key Steps to Take


Transcript:

Patricia:

Dr. Rogers, we’ve talked a little bit about symptoms – fatigue, night sweats, swollen lymph nodes. How do you manage the symptoms of CLL?

Dr. Rogers:

That’s a good question. So, if people have enough symptoms from CLL that’s really impacting their life significantly, then I suggest they take a CLL treatment.

So, if people have big lymph nodes that are interfering with what they’re doing – like I said, that nice man that was too fatigued to get his mail off his porch – that’s a reason to do a CLL therapy, treat the CLL, and make those symptoms go away. The really difficult ones are when you’re not sure if someone’s fatigue is related to CLL.

So, there’s many people I take care of that are living with chronic levels of fatigue that are not enough to impair their daily activities much, and you’re not sure what it could be related to, so one thing I like to do for things that aren’t clearly severe CLL symptoms is try to figure out what else could be causing it. So, I know myself and many other physicians I work with closely that treat CLL – we think we might diagnose more people with sleep apnea than fatigue related to CLL, and getting your sleep apnea treated is very important. So, it’s always important to do a very thorough look to make sure that these symptoms are from CLL.

And then, in terms of milder fatigue, treating CLL won’t always make that better because people usually live with some chronic side effects from the treatment, and it’s really hard to improve on feeling really good. So, if people have some mild fatigue but feel pretty good in general, it can really only make that worse at some point. And, I find that people themselves find ways to manage. Some people who might be in the actually elderly category like to nap, especially if they can and they’re retired.

Younger people actually shockingly sometimes find moderate exercise helpful. And, I know a lot of people find moderate exercise helpful for other forms of fatigue. So, for people living with mild levels of fatigue, that is definitely – people have those strategies to exercise. A couple people really improved their nutrition and found it helpful. So, sleeping better, focusing on maximizing benefit from things you can do, is good.

In terms of night sweats that people get sometimes that aren’t too severe, usually, they find ways to manage with fans or things like that in the bedroom.

Patricia:

These sound like important quality-of-life conversations with your physician.

Dr. Rogers:

Definitely. And, I think any time people have symptoms, it’s always good to talk to definitely your hematologist, especially if you have CLL and you don’t know if it’s CLL-related or it could be, and then, also, your primary care doctor or your general doctor, because sometimes, they’re really good at thinking of what else could be contributing, and occasionally, it’s a back-and-forth before you really determine what’s causing this and if it’s CLL-related, but either way, feeling better is really important.

The Truth About the Causes of CLL

The Truth About the Causes of CLL from Patient Empowerment Network on Vimeo.

 What causes chronic lymphocytic leukemia (CLL)? Dr. Kerry Rogers shares facts and addresses common misconceptions about the causes of CLL.

Dr. Kerry Rogers is a hematologist-oncologist at The James Cancer Hospital and Solove Research Institute. More about Dr. Rogers here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

The Truth About CLL Symptoms

  

How to Learn More About Your CLL

  

Essential Lab Tests for CLL Patients


Transcript:

Patricia:                      

Here we go. Dr. Rogers, let’s talk about facts and fiction around CLL. Here’s what we’ve heard from CLL patients. Are these fact or fiction? “Exposure to pesticides caused my CLL.”

Dr. Rogers:                 

So, this is a very difficult one, and I will preface this by saying I’m not actually an expert in environmental exposures. I am more an expert in CLL management. But, there is some evidence that exposure to pesticides, including Roundup, increases the risk for developing non-Hodgkin’s lymphoma, and there’s a class-action lawsuit against Roundup that my patients keep asking me about.

I think it’s really hard to say for any one person whether or not their cancer is caused by pesticide exposure. If it’s someone that sprayed Roundup in their garden a couple times, then no, I wouldn’t think so. If it’s someone that was bathing in it regularly, exposed to it on the farm all the time, then it might have contributed, but there’s usually more than one thing that goes into someone getting CLL, so I would never plant the entire blame for something on one particular exposure, but I do think it’s quite possible that pesticide exposure can increase a person’s risk for developing CLL and non-Hodgkin’s lymphoma.

Patricia:                      

This is probably applicable just to veterans. “I was exposed to Agent Orange, and it caused my CLL.”

Dr. Rogers:                 

So, the same stuff I said about pesticides applies to Agent Orange, but Agent Orange can be a factor in developing CLL. It is in the VA list of diseases associated with Agent Orange exposure. So, for anyone that was exposed to Agent Orange that developed CLL, I would really encourage them to go to the VA and get their Agent Orange intake interview because they are likely entitled to VA benefits because they have CLL and were exposed to Agent Orange.

Patricia:                      

Do you hear that often from your patients who were exposed to Agent Orange?

Dr. Rogers:                 

That they’ve gone to the VA? Yes. Actually, I have a couple people that – many of these people get care at the VA, which is also great, but I do take care of a couple of people who have VA benefits due to Agent Orange exposure who have CLL for sure.

I also have a couple people that, despite the fact that they were exposed to Agent Orange, didn’t feel like going to the VA and seeing if they could get benefits, and I think that’s very reasonable, too. Whether or not people wanna do that is an individual decision, but is definitely on the list of Agent Orange exposure-related diseases. And so, the VA could provide care, medications for CLL, and in some cases, other financial benefits, so for anyone who would like, I think contacting the VA if you have CLL and were exposed to Agent Orange is not a bad idea.

Patricia:

How about this one? “CLL is only a disease of the elderly.”

Dr. Rogers:

Oh. Well, that one is definitely not true. So, CLL is not really a disease of children. I’ve never seen someone under 18 with it, and of course, the median age of diagnosis is somewhere between 65 and 70, sort of around 65, so that means that there’s a lot of people less than 65 living with CLL.

I’ve seen people as young as 20, I’ve seen some people in their 30s, I see many people in their 40s and 50s, and also, part of this question is what do you consider elderly? I don’t really know that I consider people in their 60s elderly in many cases. So, people in their 90s are usually willing to accept that they’re elderly, but people in their 60s, often, I wouldn’t call them elderly, and I know you draw these age numbers to say you’re a senior citizen, but there’s more things that contribute to the word “elderly.”

So, I guess what I’d say is this is – CLL is definitely not exclusively a disease of the elderly. There are many people in their 40s living with this, and I’ve seen people as young as their 20s, and then, also, you gotta figure out for yourself where you’re gonna draw the line and say “elderly.”

Patricia:

Sure. How about this one? “CLL is genetic, and my children may inherit it.”

Dr. Rogers:

So, this is a very difficult question. Instead of saying CLL is genetic, I think what I would say is that CLL is heritable, meaning it can run in families.

And, the rough estimate is that 1 in every 10 people that are living with CLL have someone in their family that will also get CLL, so we know that it does run in families – not in every case, but many cases – and I think at least in terms of people I’ve seen with this, people come and see me, and they either say, “Oh yeah, sure, my cousin, my uncle, my parents, my brother – everybody had CLL.” Or, they’ll say, “Really? Someone else in my family could get this?” So, it becomes pretty clear who’s gonna have it in their family and who’s not, but it does increase the risk of your family members getting CLL.

The interesting part of that is as a CLL community, I think we have not done a very – or, we have not been able to pin down a gene that causes it. So, if you think about breast cancer, colon cancer, you can say, “Oh, someone has a BRCA mutation, the family needs to get tested, we can do something to avoid your kids getting breast cancer.”

But really, with CLL, they’ve done a lot of research looking at family cohorts – and, by “they,” I mean not me specifically, but other CLL researchers have done this – and really have not identified anything that’s saying, “Oh, if you have this gene, you’re gonna get CLL, you’re at risk for CLL,” so, we can’t say it’s genetic and there’s one gene it’s pinned on, although it might be genetic based on a constellation of genes or a gene we haven’t identified. So, I think that’s kind of interesting.

The other thing that I’ll say that’s really important when thinking about whether or not your family could be at risk for CLL is that even people that have very what we call unfavorable or high-risk CLL, with something like deletion 17p, other family members that have CLL end up having a pre-CLL condition called monoclonal B lymphocytosis, or 13q CLL, or 11q CLL, so they have a completely different genetic feature for their CLL, even though you can tell they’re in the family as people with CLL.

So, it’s not that the CLL genetic factors we use to predict how you’re gonna do with it are inherited throughout the family, just the risk for getting CLL. I think that’s important to realize.

The other thing is that unlike breast cancer, where you say, “Oh, this is in your family, you should get breast MRIs, you should consider a prophylactic mastectomy,” there’s not a good screening system for CLL, and since when it’s diagnosed, it’s observed, and there’s no known way that we have to prevent it, it’s not like you have to go and get your entire family tested because we don’t have a genetic test, and a screening is not as beneficial as it is in breast cancer where you can get a surgery to prevent yourself from getting the disease. Does that make sense? Okay.

Patricia:

Thank you. What are some of the things that you hear from your patients that we haven’t mentioned?

Dr. Rogers:

About CLL?

Patricia:

About the way they got it.

Dr. Rogers:

Oh, the way they got it. Hmm.

I think the most common things I hear from people that we haven’t mentioned are in either the exposure category, to things that aren’t known to cause CLL, or infections, like, “Oh, I had a really bad bout of influenza,” or “I got pneumonia, and then I got CLL.” I don’t know if these – I don’t know if any infections that are demonstrated to cause CLL.

Sometimes, the white count can go up when people have infections in response to that, because they’re still living immune system cells, so if people get diagnosed when they have an infection because they got their blood drawn or because their white count went up because they were sick, but that’s something common I hear. And so, it’s really hard to say, “Your bout of pneumonia isn’t why you got this,” but it is frequently how people get diagnosed with that, so I hear that sometimes.

Patricia:

What are the actual causes of CLL? What do we know?

Dr. Rogers:

So, CLL, like most blood cancers is – the way I like to think about it is that your blood cells are one of the most rapidly growing and dividing cells in the body.

You know how over the course of your lifespan, your skin sloughs off, your hair grows, you have to cut it? So, your blood cells divide and turn over within your body, and they’re really quite rapidly dividing, and when cells divide, they replicate their genetic material, and just because it happens so many times over the lifespan, they make mistakes and pick up mutations.

So, many of the mutations they pick up either cause that cell to die, which is fine, or cause your immune system to attack it as abnormal, which is fine. But, in some cases, the mistake or mutation they made when the cells were dividing causes the calls to become broken or mutated in a very specific way that makes them CLL. And, it’s probably not just one mutation; it’s probably a series of them that accumulate to cause CLL.

And so, some of these things are those things we test for in a FISH panel, like 17p is an abnormal genetic change that happened as these cells were dividing over the course of the person’s lifespan, but there’s probably more changes than that that go on, and eventually, the cells become CLL, grow out of control, and have the common features of CLL. So, that’s how I like to think about it.

And then, these questions of “Oh, did pesticides contribute? Did this contribute? Did Agent Orange contribute?” is really just about did those agents cause your cells to break or mutate more, or in a specific way that would make them CLL? So, a lot of things that cause cancers in general, and not just CLL or increased risks for cancers in general, are things that alter, break, or change DNA.