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    3 Tips to Make the Most Out of Your CML Care

    There’s no doubt about it: the COVID-19 pandemic has shaken things up when it comes to managing chronic conditions, including chronic myeloid leukemia (CML), a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood. About 15% of leukemias in adults are CML, according to the American Cancer Society . Even as it becomes safer to enter hospitals and doctor’s offices in person, there’s still a level of anxiety about seeing others in the waiting room. Nikki Yuill of The Leukemia and Lymphoma Society, spoke with Dr. Ehab Atallah, MD, from the Medical College of Wisconsin, about the unique challenges that the pandemic has caused for people living with cancer, particularly CML. Dr. Atallah says that cancer treatment has always remained a priority no matter what; doctors have simply adapted to the limited access to people in person. “According to the American Society of Hematology, and experts at the International CML Foundation, there have not been any significant changes to the recommended treatment for newly diagnosed patients with CML or those currently receiving care. Many health care practices have adapted to the circumstances with safety measures to protect patients with CML.” Most doctor offices have pivoted to virtual and televisit appointments, as well as emailing and texting with people living with CML. In-person visits have also been shortened to minimize exposure (where possible), and labs have worked to space out those seeking things like blood work to avoid extra people waiting in the same room. Many people have adapted to the new normal and we could see some of these changes in the format and length of doctor visits becoming the norm even after the pandemic; however, this could hurt patients who are in need of more hands-on care: people whose current treatment plan stops working or is causing them unbearable side effects, or those still seeking something that will stick and make a positive impact on their health. There have been many advancements in the last 20 years in CML treatment and management, according to Dr. Atallah, which also means more options than ever. That, combined with the unique protocols around COVID-19, makes it even more paramount for both you and your doctor to make the most of appointment conversations. This is where proactivity plays an even bigger role. Be fully open with your doctor about life with CML “The more we know about the day-to-day experiences of patients with CML, the better care we can offer. Patients should feel comfortable bringing up challenges and asking questions,” says Dr. Atallah. Reflect on your current treatment – is it still meeting your needs in terms of your response and the tolerability of side effects? Talk to loved ones that you live with or see frequently to see if they’ve noticed any changes in your health status. Prepare for meetings with your doctor or care team, and bring notes about your feelings and response to treatment, as well as how frequently any symptoms impact your daily life. Ask questions and start a dialogue with your care team if you aren’t happy with your response to side effects and/or wish to explore other options. And when talking to your doctor, remember that you’re never complaining when talking about symptoms, however small they may seem to you! That side effect could be the key in making a positive change to your overall treatment plan. Track your experience with CML and your treatment Nikki from The Leukemia and Lymphoma Society says that her organization talks to people living with CML about the importance of “staying in the chronic phase,” meaning that CML isn’t advancing to a more severe phase. One way to recognize any potential red flags when it comes to CML advancement is for people to familiarize themselves with what to expect and watch for. One method she suggests is journaling regularly because “it is a great way to capture data of your day-to-day experience that helps to have an informed conversation.” Tools like the LLS Health Manager or BELONG app can help people hold themselves accountable to this practice, as well as connect them with like-minded people who are going through a similar situation. The Mighty app is also a great community forum to find others living with any type of cancer. Prepare for your visit Once you have identified the areas of concern or topics that you’d like to discuss with your doctor, prepare for your visit by writing down your list of questions or updates and share them with your care team as an “agenda” as soon as your visit starts. In a context where time is ever more precious, this will help you and your providers use the time together to address your most pressing needs. All of these suggestions are key in helping your doctor help you find the best treatment for CML, your lifestyle, and your needs. The more aware and proactive you are about how CML impacts your life, plus the more open you are with your care team, the greater the chance that your doctor can help you find and stay on a care plan that better fits your health and well-being. To learn more about CML and find additional resources, please visit WhatAboutMyCML.com . Learn More 12/21 171562

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    There Isn’t Such a Thing as a “Good Cancer”

    If you’re living with a chronic condition, it can sometimes seem easy to compare your experience to another’s story and suggest that one is “better” or “worse” than the other. This is something we, as the chronic condition community, do often; we see a loved one going through a difficult experience and decide that our case is the “better” one … so we shouldn’t complain. Especially when it comes to cancer, there are so many different types with varying symptoms, treatment options, survival rates, and other differentiating factors. But the truth is, every cancer case can be scary, confusing, and full of unknowns for the person living through it, and every situation deserves to be treated with the same level of care, love, respect, and support. In the last couple of years, the pandemic has disrupted a lot, including cancer care, but the need for people living with chronic myeloid leukemia (CML) to receive proper attention remains just as important as ever. According to the Leukemia & Lymphoma Society (LLS), CML occurs when a genetic change takes place in an early version of stem cells, the cells that make red blood cells, platelets, and most types of white blood cells. This change forms an abnormal gene called BCR-ABL , which produces an abnormal protein called the BCR-ABL1 which leads to the development of CML cells. The leukemia cells grow and divide, building up in the bone marrow and spilling over into the blood. In recent decades, CML has often been labeled as the “good cancer.” However, not only does this outlook minimize the reality of the person who is living with CML, but it also diminishes the importance of remaining proactive about treatment. Someone who is living with any type of cancer may already feel hesitant to disclose every symptom, question, or concern to their doctor. Add the narrative that CML is a “good cancer,” and it may make some feel as if they’re “complaining.” In reality, you deserve to be heard and validated for your experience regardless of your diagnosis. Nikki Yuill from The Leukemia and Lymphoma Society spoke with Dr. Ehab Atallah, MD, from the Medical College of Wisconsin, to get his opinion on why CML may be deemed as a “good cancer” by some. One reason is that the prognosis and medication options have greatly improved in the last few decades. “Over the last 20 years, with advances in treatment, patients and health care professionals have seen CML become more manageable. Based on data available from 2010 to 2016, the estimated five-year cancer survival rate for those with CML is 70 percent,” he said. He also reiterated the importance of continuing to engage with the treatment, monitor responses to it, and notice major milestones toward remission. When it comes to anyone living with CML, Dr. Atallah says the goal is always to see the number of leukemic cells in the blood go down and help the person get back to their day-to-day life. However, just like anything else, people who live with CML all have different experiences. What works for one person may not work for the other. Some people may notice treatment side effects that disrupt their daily life, while others may not encounter any at all. “In some cases, a [person] may be on a medication that was once working, but the number of leukemic cells starts to plateau or even go up instead of down. This may be due to drug resistance, which happens when cancer cells no longer respond to a medication,” he explains. While the advancements in care are definitely worth celebrating, it’s still important to remain diligent with health management for these reasons. It’s also crucial for you to fully share what you’re going through with your doctor. As mentioned above, Nikki Yuill shares that The Leukemia and Lymphoma Society hears about a lot of people who aren’t fully disclosing everything during doctor visits. In addition to not wanting to sound like a “complainer,” Dr. Atallah says that many might feel as if they’re supposed to “work through it” when it comes to cancer. While side effects are common and to be expected, it doesn’t mean that a person should struggle through them without support from their doctor. Dr. Atallah also encourages his peers to ask more questions too, knowing that some people may not know where to start when discussing their experience with CML. Regardless of whether you view your cancer as a “good cancer” or not, always speak up about what you’re experiencing, whether it’s to loved ones, friends, and especially your doctor. You deserve to be supported, cared for, and validated. To learn more about CML and find additional resources, please visit WhatAboutMyCML.com . Learn More 12/21 171563

    Community Voices
    cesur
    Community Voices

    I’m new here!

    Hi, my name is hopeprayer. I'm here because
    of a family member w leukemia
    #MightyTogether

    1 person is talking about this
    Community Voices
    Community Voices

    I’m new here!

    Hi, my name is hopeprayer. I'm here because
    of a family member w leukemia
    #MightyTogether

    1 person is talking about this
    Community Voices

    Wrecking Ball, Meet Rope: Cancer + Mental Illness

    <p>Wrecking Ball, Meet Rope: <a href="https://themighty.com/topic/cancer/?label=Cancer" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="Cancer" title="Cancer" target="_blank">Cancer</a> + <a href="https://themighty.com/topic/mental-health/?label=Mental Illness" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="Mental Illness" title="Mental Illness" target="_blank">Mental Illness</a></p>
    6 people are talking about this
    Community Voices

    Forty-Two Days of Grief

    <p>Forty-Two Days of Grief</p>
    1 person is talking about this
    Community Voices

    I'm new here!

    Hi, my name is akaTeri. I’m new to The Mighty and look forward to sharing my story:::

    My mom was happy and beautiful and fun during the day, but at night she became a different person. She was so unhappy, resentful and angry (no booze or drugs involved)!!!! All four of us tiny kids huddled together and were very scared. Frightened!! My father who was an introvert, just would say, "Oh shut up." And he would read the paper or watch tv. This went on for 15 years. My father died of leukemia when I was 15, and so I became the CareProvider. In fact, I had always been the one who noticed that if I kept the house in order and very very "kind" to my mother, she wouldn't turn into another person at night (sometimes)--So Therefore, yes, I am the one who "fawned" my way through life. A horrible habit I have discovered. And all three of my sibs are messed up, too. You see, my mom never apologized for any of it. Her tirades always lasted two hours. In fact, as we got older, we would nod and say, "Here goes! Two hours down the drain." The worst part is that she never "owned it. Never apologized --ever. So you see, there wasn't any assurance of safety from our own mother. We somehow figured it out on our own. Trust issues for me? YES! Self loathing? YES. Because mom never reassured us of any sort of safety, sanity and love after dinner. It was almost like she kept reminding us we were a burden in her life. And all of our school friends thought she was the coolest mom in town. I do remember one time, she said to us that —IF we we told Anybody (about her) we would be punished..."it would be a mortal sin!!!!!"So yes, we hid the truth, we were scared to death of her and God. We were manipulated. "Please help us! Please help us!" I would cry in my nighttime dreams! That is why I latched on to this website, because someone else cared about me and pushed me in your direction. ----->I am learning that TRUTH or TRUTHS will expose light and healing on funky wounds from childhood trauma. Thank goodness, because I am almost 68. My mother has since died, and at first, I didn't want to tell anyone about her for fear she would come back and curse me! Haunt me! —--But my counselor said, "Oh no, your mother wants you to be whole. She wants you to be finally free of that darkness." I said, "OKAY." And I have been lighter and much more honest with myself than ever before. Self care? I am ready for it. x-x-x-x-x Bring it on! —------I would love to help others too---but of course, that is my CAREGIVING personality coming out right away :)) My good friend who has guided me, says I am an Empath, too. I had to look it up and when I did, I cried.

    #MightyTogether

    #PTSD

    #ComplexPosttraumaticStressDisorder

    2 people are talking about this
    Community Voices

    Very hard decision

    <p>Very hard decision</p>
    2 people are talking about this