Understanding Acute Lymphoblastic Leukemia (ALL)
- Detroit-based photographer Vuhlandes was diagnosed with a rare blood cancer known as acute lymphoblastic leukemia (ALL) after a bout with extreme lower back pain and stomach pain left him unable to walk, prompting him to go to the hospital.
- Despite being diagnosed with an aggressive from of blood and bone marrow, Vuhlandes has maintained a positive outlook on his cancer journey, something many people battling cancer can look up to.
- Acute lymphoblastic leukemia, or ALL, is a type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia.
- Dr. Zuri Murrell of Cedars-Sinai says optimism helps a cancer patient’s prognosis. He previously told SurvivorNet, “A positive attitude is really important.”
- Psychiatrist Dr. Lori Plutchik tells SurvivorNet that there is no “one right way” to seek support while coping with a diagnosis. She adds some people are comfortable talking openly about their diagnosis, while others prefer to keep it private, and both approaches are normal.
- She encourages those close to a person going through cancer to be respectful of their wishes when it comes to how they are comfortable seeking support
Prior to his diagnosis, Vuhlandes says he was unable “to stand or really do anything,” prompting him to go to the hospital and undergo testing, which ultimately revealed his diagnosis.
Read MoreIn a Instagram post, revealing his diagnosis, Vulandes explained how he was diagnosed a “couple weeks ago with ALL, saying, “It took me a little while to say anything because of how I’m feeling but I did want to share with you guys what was going on and the future of my work and my health.View this post on Instagram
“I made a video talking about the situation and where I am physically and mentally if anyone wants to hear a little more. This has clearly turned my life upside down emotionally and physically so a few things are going to change.”
Vuhlandes praised his fans for their support, hoping they would remain by his side throughout this journey.
“I love you all. I also do have a GoFundMe up in my bio for any unforeseen issues in my health or situation, for anyone who wants to donate it would be beyond appreciated. Anything not used for my these things will be given back into another organization,” he added.
That same day Vuhlandes took to social media, he also shared a lengthy video on YouTube, further explaining what led to his diagnosis and how he’s coping with the disease.
In the footage, shared on April 1, Vuhlandes explained, “I wanted to come on here and talk to you guys candidly about the situation, the future of this channel, the future of me, and kind of just have this candid conversation.”
After noting how he didn’t write anything down or plan what he was going to say, as he strives to maintain being “open and honest” to his followers, he explained, “I have cancer, specifically ALL, which is acute lymphoblastic leukemia. It’s basically a blood cancer where my white blood cells are very, very high, and it’s just like an aggressive cancer of the bone marrow and blood cells.
“So anyway, a couple of weeks ago I started fasting for Ramadan and it was going well … a couple days in fasting I started to notice a lower back, some stomach pain, and just some irritation in my stomach overall. I ended up going to urgent care, which I was reluctant to do because I don’t normally go to the doctor for things because I usually just get over it.”
Vuhlandes also recounted how he ended up going to urgent care, which suspected he had a kidney stone, something believed he could have as he’s dealt with similar issues in the past with his kidney. He also thought it could be the issue as he noted how he’s not been drinking much water or taking care of himself.
However, when the pain worsened, leaving him unable “to stand or really do anything,” he went to the hospital, where he underwent a CT scan,, had blood tests done, and a urine sample taken.
After waiting a while and having his blood drawn and additional time, Vuhlandes was told his “white blood cell count was extremely high,” and “it usually means blood leukemia.”
Vuhlandes was ultimately admitted and scheduled to see a doctor in the morning, staying in the hospital for approximately a week for further testing (including a bone marrow biopsy, and conversations with different medical teams to figure out what he had.
The testing and medical teams revealed he had ALL, and since his diagnosis last month, the photographer has already underwent weeks of treatment and says it’s going well,
“All things considered, I might not seem like myself right now, I’m a little week right now and kind of brain-fogged, my voice sounds weird … but at the same time, I’m in very good and positive spirits,” he explained.
“I’m not sad [or] down in the dumps, my mental health is in a decent stage, and I just over feel good. I have a really, really, really good support team behind me with my family, my friends, and everyone who knows about this already has been the biggest help. Without them I don’t know where I’d be mentally in this process.”
Coping With a Diagnosis
He added, “I’m just in the process of getting care and fighting cancer. And doing all the things I need to do to make sure I’m ok. I think it’s important to say that I know this isn’t a death sentence. Now, clearly the thought of cancer … and everything that goes with it is terrifying, but at the same time I do think that it’s a great time and opportunity to learn more about myself and life itself. And just make the best of this experience that I physically and mentally can.
Vuhlandes, who understands what lies ahead in this cancer-fighting journey, like losing his hair, continued, “So far, I’ve had really, really bad days and I’ve had some decent days, and I’d like to take some of those decent days with the bad and just be as positive as I possibly can.
“It’s a great time and opportunity to learn more about myself and just life itself and make the best of this experience.”
He concluded by raising awareness for a GoFundMe his friend made for him, titled “Help Vuhlandes Beat Cancer,” which has since raised more than $87,000, nearing it’s goal of $100,000.
The GoFundMe reads: “While Vuh and his doctors have been extremely optimistic about his journey battling ALL, his treatment is going to be arduous with unforeseen challenges. The projected treatment timeline is roughly 3 years, with the first year being heavy with treatment, uncertainty, and additional testing.
“I’m setting up this GoFundMe to raise money to help pay for unforeseen medical costs and supplement Vuh’s cost of living while he is unable to work due to his aggressive treatment, sometimes requiring full days of chemo and extended stays in the hospital.
“It’s difficult to forecast exactly how much money will be needed, but anything raised will go towards Vuh’s treatment and living costs. Any leftover money once he recovers will be donated to The Leukemia & Lymphoma Society to ensure others don’t need to experience what Vuh is currently going through.”
Learning More About Acute Lymphoblastic Leukemia (ALL)
Being diagnosed with acute lymphoblastic leukemia (ALL) can be emotionally overwhelming.
Patients and their loved ones will typically have many questions about the disease and how it will affect them. Dr. Olalekan Oluwole, a hematologist with Vanderbilt University Medical Center, spoke with SurvivorNet in a previous interview to answer some of the most frequent questions people have after an ALL diagnosis.
What Is Acute Lymphoblastic Leukemia (ALL)?
Dr. Oluwole says many times people worry that they might pass the disease on to other family members and wonder how they got it in the first place. He explained that in most causes it’s a quiet mutation that causes the leukemia.
“It is often not something that is heritable,” Dr. Oluwole told SurvivorNet. “If there happens to be a pattern in a certain family, many times that may be maybe because they were in the same environment. ‘I got exposed to the same thing, right?’ So it is not necessarily something that is heritable or like some of the other cancers, some of the other genes that we know about things like breast cancer. ALL is not like that.”
He said another question he hears frequently is what if people do nothing after a diagnosis.
“The ALL grows very, very fast. If we don’t do anything, it will cause somebody to die within a few weeks,” Dr. Oluwole says, stressing the importance of immediate care.
All About Acute Lymphoblastic Leukemia (ALL) — The Most Common Questions About the Disease
He says many times the leukemia is rested in the bone marrow, and because it is an abnormal growth, it just keeps dividing.
“It doesn’t follow rules, and it doesn’t stop,” he told SurvivorNet. “Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain.”
“By the time somebody comes to us and they have ALL we already assume that it has gone everywhere in the body, and we have to treat them like that,” Dr. Oluwole says.
He says many patients present with fever or infections because the bone marrow has “failed in its ability to make other types of blood cells.”
As for support after such a life-changing diagnosis, he says there are trained professionals such as have case managers and hospital navigators exist to aid people through their cancer journeys.
“Cancer is a really life-changing diagnosis and we would like our patients to know they don’t have to feel as if they are on their own.”
Focusing on the Positive Amid Cancer
Vuhlandes’ positive attitude while battling cancer is something we can all admire. He’s managed to keep an upbeat mindset through his diagnosis with an aggressive form of cancer.
This is something Dr. Zuri Murrell of Cedars-Sinai says helps a cancer patient’s prognosis. He previously told SurvivorNet, “A positive attitude is really important.”
WATCH: Staying positive matters.
“My patients who thrive, even with stage 4 cancer, from the time that they, about a month after they’re diagnosed, I kind of am pretty good at seeing who is going to be OK. Now doesn’t that mean I’m good at saying that the cancer won’t grow,” Dr. Murrell says.
Focusing on the positive is part of positive psychology. According to Dr. Samantha Boardman, a New York-based psychiatrist, positive psychology means focusing on encouraging feelings and finding what brings you a sense of vitality, as opposed to focusing on the illness.
For example, Noelle Kouris was only 34 years old when she was diagnosed with ovarian cancer. Similar to Mendes’ mom, she kept a positive attitude during cancer treatment and turned to humor to keep herself going.
WATCH: “F*ck You, Cancer But I Say It With A Smile” Ovarian Cancer Survivor Noelle Kouris Shares Her Story
“I just tried to smile every day that I walked into the center,” Kouris previously told SurvivorNet.
“The nurses used to tell me that I had this light about me. And I would try to crack jokes all the time at chemo. I would just smile, and offer somebody a smile because some people were there by themselves and had nobody by their side. So, if I offered them a smile, hopefully, it brought some positivity to their day,” she continued.
Mendes and Kouris are not the only ones who hasve learned the importance of positivity during caregiving or their own cancer battle.
Jesus Trejo is a stand-up comedian in Long Beach, California. He became a caregiver for both of his parents after his mother was diagnosed with a cancerous brain tumor and his father was later faced with colon cancer. But instead of panicking and focusing on the devastating nature of the situation, the only child stepped up to care for his parents with love and laughter. In a previous interview with SurvivorNet, Trejo explained how he put his career aside to care for his parents in their time of need while making time to smile along the way.
Stand-Up Comedian & Cancer Caregiver Jesus Trejo Reminds Us That ‘Laughter is a Game-Changer’
“The only advice I have for anyone watching this is laugh and laugh often, laugh at yourself. Don’t take yourself seriously. Things are already bad. Because once you do that, it’s a game-changer,” Trejo told SurvivorNet.
He also says the laughter itself might be brief, but “the effects of it just reverberate through your body, and can change an already bad situation into a better one.”
Meanwhile, Dr. Dana Chase, a Gynecologic Oncologist at UCLA Health, also says it’s important to try to focus on the good, stay positive, and do things that bring you joy to the degree you’re able to do so amid battling a disease like cancer.
“We know, actually from good studies, that emotional health, quality of life is associated with survival, meaning better quality of life is associated with better survival, better outcomes,” Dr. Chase said in an earlier interview.
SurvivorNetTV Presents: Maintaining a Positive Headspace
Opening Up About a Diagnosis
Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others, like Vuhlandes initially did, prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid.
RELATED: Check Out SurvivorNet’s Resources on Mental Health
WATCH: Sharing a Diagnosis
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explains.
Questions like “How much information should they share and with whom should they share the information?” are things Plutchik says patients take into consideration.
Dr. Plutchik explains, “There is no one right way to handle this diagnosis. People should do what feels right to them.”
A cancer journey can last months to years, which means cancer warriors may be experiencing a lot of uncertainty until they fully understand where their health stands. This uncertainty can influence when a cancer patient is ready to share their diagnosis, Dr. Plutchik further explained.
Dr. Plutchik stresses that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Deciding When and Who to Tell About My Diagnosis Became a Burden
Contributing: SurvivorNet Staff
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