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This Mutation Likely Saved a Colon Cancer Patient’s Life

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March 18, 2024 – When Ken Aaron, 51, woke up from his first-ever colonoscopy last February to his doctor mouthing the words “we found a tumor,” there was no one more surprised than he was. The married father of two had some very mild GI discomfort before he booked the scan, but, besides that, there was nothing significantly amiss with the writer, an avid hiker and skier who lives in the Adirondacks.

“If I ate a fried meal, I’d feel blah,” he said. “It was more like ‘I don’t think I want that hamburger today – I don’t feel like it will sit well,’ but I don’t even know if those symptoms were related to my cancer.”

As Aaron absorbed the news that he had stage II colorectal cancer – and got over the shock of the diagnosis – he quickly realized that he would need to be his own advocate. At first, this took the form of gathering information, including a list of all the people he went to college with who became doctors.

Next, he put his case through a journalistic lens. He had no idea at the time how important this would be or that it would lead him to the frontiers of cancer science and unlikely recovery. 

“I treated my diagnosis like I was doing research for a story I was writing, but the story was myself,” he said. “I started thinking: What sources do I need to talk to, what facts could I establish about my disease, and what decisions do I need to make immediately.”

Aaron isn’t alone in facing this diagnosis. Colorectal cancer is the third most common cancer diagnosed in men and women in the U.S., according to the American Cancer Society. And the number of people under the age of 50 being diagnosed with the disease has been on the rise since the 1990s – though experts aren’t sure why.

Aaron’s first option: Surgery at his local hospital to remove the mass. And at first, this made sense to him.

“When you get a cancer diagnosis, your instinct is ‘get it out of me,’” he said, adding that he and his wife also thought it would be smart to reach out to a doctor friend first. “She told us we’d be crazy not to go to a dedicated colorectal cancer care center where this is all they do.”

With that advice in mind, Aaron began cold-calling cancer centers near his home, including the University of Vermont Cancer Center, the Dana-Farber Cancer Institute in Boston, and the Memorial Sloan Kettering Cancer Center in New York City.

“I knew no one – I couldn’t drop any names – I just called Sloan Kettering’s 800 number,” he said, adding that right away, he was scheduled for an appointment at one of their New Jersey locations. “Their only questions: Do you have a diagnosis and do you have insurance. I had the right answer to both.”

An Unexpected Finding

The next morning, Aaron and his wife drove the 5 hours to Memorial Sloan Kettering on what happened to be one of the snowiest days that winter. During that appointment with Michael Foote, MD, a gastrointestinal oncologist, the couple was told all the same things that Aaron’s local surgeon told him – that he would be scheduled for surgery to remove part of his colon. 

But what came next was a twist Aaron never expected.

“He told me that they wanted to look at the biopsy taken during my colonoscopy to see if I had a certain genetic deficiency that might qualify me for immunotherapy,” he said. “They told me that if I did, that would be like winning the lottery.”

When his doctor called days later to say that, yes, his tumor had a specific genetic makeup known as mismatch repair-deficient (MMRd) (present in 5% to 10% of all rectal cancer patients), he was floored, because this meant he might qualify for a cutting-edge immunotherapy clinical trial to try to shrink it – or have it disappear entirely – without chemotherapy, radiation, or surgery.

“We got so excited when we got Ken’s results,” Foote said. “In our clinical trial, we knew that the tumors in 100% of the rectal cancer patients who had immunotherapy disappeared, so we had expanded the trial to other types of cancer, including colon cancer. We thought he would be a good candidate for the trial.”

But first he would need a PET scan to make sure his tumor hadn’t metastasized. This, too, prompted another shocking finding. During the scan, one of his lymph nodes lit up, so he was scheduled for a biopsy right away. The finding: Aaron also has low-grade follicular lymphoma – that had nothing to do with his colon tumor.

Because Aaron now had two cancers, he no longer qualified for the clinical trial, but that didn’t stop his team from starting him on pembrolizumab (Keytruda) instead of dostarlimab (Jemperli), the drug being used in the trial. 

“This was an additional complication, as lymphoma is a cancer of the immune system and we would be using immunotherapy to treat Ken’s colon cancer,” Foote said. “It wasn’t clear at first how effective it would be, but we decided to try it.”

In April, Aaron had the first of his nine immunotherapy IVs of Keytruda, 2 ounces at a time, given every 3 weeks. Aaron had virtually no side effects, except that his existing gout got worse.

“This isn’t like chemo,” he said. “I can drive to the cancer center and back and even go skiing or hiking the next day.”

A Potential Bump in the Road – and Then a Miracle

After the fifth treatment, Aaron had another PET scan and another colonoscopy. It showed that he was making progress, but it was slower compared to other patients in the clinical trial.

“That was frustrating,” he said. “But my oncologist said that he thought my lymphoma might be the reason – they were giving me drugs to kick my immune system into gear, but lymphoma is a cancer of the immune system, so he explained that it might be tugging in the opposite direction a bit.”

It was only after his seventh treatment, colonoscopy, and another scan that a miracle happened: There was no sign of the tumor, and the biopsy came up clean.

“There was no cancer detected, and there was only scar tissue where the tumor was,” he said. “It was a miracle – I still can’t believe I’m saying this out loud.”

As per protocol, Aaron completed his treatment and had his final treatment in September. He has since had two PET scans, with another coming in June. He will get colonoscopies every 4 months for the foreseeable future. 

“You’re never really done – it’s just a new phase,” he said. “This is why they have support groups for cancer survivors. It’s not because you sit around and exchange high-fives. You’ve been on a war footing, and now you’re not, and you have a little PTSD. It’s definitely a traumatic experience.”

Aaron remains the de facto organizer of an online support group with his fellow Sloan Kettering patients.

“We’re still helping each other,” he said. “I’m still scheduling our Zooms every other Tuesday at 3 p.m. We need each other, and I know it helps all of us to talk to each other about what we’re going through.”

Ultimately, Aaron said, he’s walked away from this situation with a new philosophy.

“The answer is to extend empathy to everybody you meet and to do it perhaps more than I was doing it every day,” he said. “It’s not necessarily because you never know what somebody has going on. That’s true. But, even more than that, if you extend grace and somebody else does it in turn, the world becomes a better place.”

Aaron’s Tips for Advocating for Yourself

Make Sure Your Doctor Listens to You

“If you think something is wrong, get an answer,” he said. “You know your body best. If you feel like something’s not right, don’t let it go. If your doctor isn’t responsive, find another. Before I was diagnosed, I’m glad to say my primary care doctor was very attentive to my concerns, even though they were subtle; I’m still not sure they were related to my cancer. But I know others whose initial concerns were ignored.”

Escalate the Situation Right Away

“Find an institution or hospital that specializes in your cancer and go there. I wanted to be the most boring case my doctor saw all week, not the most interesting.”

Find the Best ‘Cancer Machine’ Near You

“In choosing to go to [Sloan Kettering], I felt like I engaged a ‘cancer machine,’” he said. “By becoming a patient there, I enlisted countless advocates on my behalf, an entire medical team steeped in the latest advances. I almost certainly wouldn’t have been put on the same treatment protocol if I didn’t go there.”

Let Your Doctors Take Care of You

“Cancer throws a lot of questions at you that can be really hard to answer, and while you want to advocate for yourself, it’s hard to know if you’re making the right decision,” he said. “Google only goes so far, but by going to a place like [Sloan Kettering], it was a relief to know that even if things went sideways – and they certainly could have as there are no guarantees with cancer – I at least took the ‘what if’ off the table. And at a time when it’s really the uncertainty that’s the hardest thing of all, it’s comforting to know you’ve done that for yourself.”



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Preteens and skincare: What parents should know – CHOC

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Published on: April 16, 2024
Last updated: April 9, 2024

Should teens and preteens be using so many skincare products with fancy ingredients? A pediatric dermatologist answers parents’ questions.

Link: https://health.choc.org/preteens-and-skincare-what-parents-should-know/



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Living With Crohn’s: My Daily Routine

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By Michelle Pickens, as told to Danny Bonvissuto

As early as I can remember, I’ve had issues with my health. When I was little, I had severe constipation, nausea, vomiting, and food sensitivities.

As I got older, those symptoms transitioned into diarrhea, irregular bowel movements, and pain. I was always very fatigued and my immune system was weak: The second someone in my class had the cold or flu, I’d get it, too. Looking back, it was a sign.

From a mental perspective, my anxiety was high. What if I need to find a bathroom? What if I’m nauseous? Doctors would say, “Oh, you’ll grow out of it. It’s just your anxiety.”

Finally, a Diagnosis

After years of misdiagnosis, I was finally diagnosed with Crohn’s disease in 2015. I was 23 and had just finished up college while working full time. My symptoms were getting worse. I had a lot of vomiting and pain. The fatigue was at the point where it was difficult for me to work or even get out of bed some days.

It was so bad it pushed me to seek additional care. I took a couple months off, looked for another job, and went through all the doctor appointments it took to get the diagnosis.

There’s no blood test for Crohn’s. No way to prove what you’re feeling. Eventually I saw the right doctor, who did a test with a pill camera called a small bowel capsule. (This is a pill-sized camera that you swallow, allowing doctors to see inside your digestive system.) It tracked my intestines and was able to get into a blind spot where neither a colonoscopy nor endoscopy can see inflammation. 

It was such a relief to get the diagnosis because it made me feel like I wasn’t crazy. For so many years I knew something was wrong and couldn’t name it. I also felt hopeful. Once I knew what I was dealing with, I knew I could work to get to a better place.

Sharing My Story

In 2016, I started a blog called Crohnically Blonde as an outlet to connect with people as I go through the stages of dealing with Crohn’s. When I first started to share, there weren’t as many people talking about it.

I’ve been able to form relationships in an online community through shared experiences. I hope someone can see my story and feel that, if they’re at the beginning of their journey, there’s a way to get through.

Managing My Medication

At first, I was on a lot of medication that wasn’t working well and was a huge imposition on my schedule. Now I get infusions of an immunosuppressive drug every 7 weeks.

It means being away from my family and job for 4-5 hours, and managing child-care coverage during the treatment and the weekend after, because I feel almost flu-like. The extra help allows me to rest and fuel back up after the treatment.

I have the option to be on more medications to control my symptoms. But I try to shy away from those and manage it on my own because I don’t want to be on medicine for every single thing.

Before I had my son, I was more willing to try different medications. But while I was pregnant, I could barely be on any of the Crohn’s medicines. After I had him, it didn’t make sense to be reliant on them.

Crohn’s, Pregnancy, and Motherhood

Crohn’s affected me throughout my pregnancy. I got very sick in my third trimester because I went off my immunosuppressive drug to avoid passing any on to the baby. I ended up having to be induced early so I could get back on the medication as soon as possible.

My son, Maddox, is 1 now. Crohn’s changed my expectation of what I thought motherhood would be.

I’ve learned that I’d rather be present and able to enjoy him in the good moments than push it when I’m sick. It’s been difficult. But if I’m not well, I can’t be there for my child. I try to be with him as much as I can, but there are times when I need to step back and take an hourlong nap.

I have a great support system: My husband, mom, or mother-in-law can step in and help out for a little while, and when I feel better, I can be a better mom. There are also days when I don’t have accessible help. In those situations, I’ll do lower-key activities that I can enjoy with him but that aren’t physically demanding on me.

Schedule and Adjust

Right now I’m in a pretty good spot. I work from home now, as a recruiter for a tech company, and that makes a huge difference. A lot of my anxiety in the past was around being in an office and being sick. Now that I can work remotely, it’s such a game changer.

But Crohn’s still affects my day-to-day. I have days where I’m feeling sick, and need to rest and change my plans so I’m home and not out somewhere.

No matter how planned-out I have my day or week, if I’m not feeling well that takes precedence. I like to be a very scheduled person. But I have to roll with the punches and have a plan B.

The biggest challenge is managing my sleep and stress. They’re both very influential in symptom flare-ups. I have to get at least 8 hours of sleep, no matter what. And I try to incorporate time to de-stress, like reading a book or relaxing at the end of the day.

Going to therapy helps offset stress as well, and is now part of my ingrained self-care schedule.

Social Life Strategies

My co-workers, family, and friends are very understanding. But that wasn’t the case at first. The more open I’ve been about Crohn’s, the more people understand that I’m not flaking out if I have to change plans; there’s an underlying reason.

I only have a certain amount of energy, so now I pick and choose. I know I need to work and be with my family, which means I have less energy to put into social situations.

I plan out what I’m comfortable doing, but have also become comfortable with changing plans. Even if I’m excited to go out to dinner with a friend, I don’t push it if I feel terrible that day.

Food in Flux

I’ve followed a gluten-free diet for years. I started with an elimination diet and realized that gluten was bothering me.

Other foods aren’t as black and white. I can eat a salad one day and it’s fine, and eat the same salad the next day and it makes me sick. I repeat the safe foods that don’t make me sick and stick to a general schedule of three meals a day that are pretty much all gluten free.

Sometimes the timing matters: I’ll wake up and feel nauseated and need a starchy food like dry cereal. If I’m going on a road trip, or have a big event, like a wedding, I plan it out and try to be careful about what I eat leading up to it because I don’t want to be sick. But it’s hard because you never really know. It’s kind of a gamble.

Flexibility Is Key

I’ve learned to be as flexible as possible. I never know what each day is going to bring, I just have to trust that my body is telling what it needs for that specific day. That’s my priority, and everything else can wait.

 



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The PowerBlock Adjustable Dumbbells That Shoppers Say Are 'Better Than BowFlex' Are $89 Off Right Now

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Men’s Journal aims to feature only the best products and services.  If you buy something via one of our links, we may earn a commission.

Adjustable dumbbells are an integral piece of fitness equipment to have in a functioning home gym, as they can be used for working on the chest, arms, shoulders, and many other muscle groups. The sweepingly popular BowFlex SelectTech 552 has been the choice of many for over a decade, but the price has shot up in recent years. If there’s another brand to know about, it’s PowerBlock, which packs just as much power and convenience as BowFlex dumbbells but for less—and now its bestselling set is on sale.

The PowerBlock Elite EXP Adjustable Dumbbells are on sale for $360 on Amazon—a 20% discount on the normal $449 price. These squared-off dumbbells have earned more than 1,700 five-star ratings from shoppers who have gone as far as saying they’re “better than BowFlex,” maker of the iconically popular SelectTech adjustable dumbbells

PowerBlock Elite EXP Adjustable Dumbbells, $360 (was $449) on Amazon

Courtesy of Amazon

Get It

The PowerBlock Elite EXP adjustable dumbbells offer a range of weights from 5 to 50 pounds in a slim, rectangular form that’s unlike any other model. The handle sits inside a cage-like design that’s padded with thick foam to protect and stabilize your forearms when lifting. Adjusting the weight is simple, too: Just use the color-coded guide on the top of the dumbbell to pick your weight, remove the magnetic selector pin, and pop it through the weight plate of the corresponding color. Once your weight is selected, everything is locked into place until you remove it again. What’s even better is that, once you’ve graduated from 50-pound weights, PowerBlock offers two expansion weights to build on your existing set.

Those who have brought PowerBlock’s adjustable dumbbells into their home gyms have raved about the high-quality build, the comfort, and their compact design, but many obsess over how easy they are to use. “I did quite a bit of research before pulling the trigger on these, but they’re exactly what I needed,” one shopper stated. “These are very easy to use. Changing weights takes me maybe 30 seconds between sets. They’re super compact and easy to store, too.” Another shopper agreed, simply stating that they’re “the most versatile, easy, and well-built that I have used.”

Many shoppers also praised the design of these dumbbells, specifically how their length is relative to the weight you select. “The weights feel great in the hand, and it is smaller when you’re using less weight as opposed to the BowFlex 552, which has the same length throughout,” one shopper described. Another shopper pointed out that with longer, fixed-length dumbbells, you “cannot get [them] close together when doing chest exercises,” but this model will allow you to achieve that complete motion.

PowerBlock adjustable dumbbells are a fine choice to feature in your home gym because of their ease of use, comfort, and design, but they’re even more of a no-brainer now that they’re on sale for just $360 and more affordable than the BowFlex SelectTech 552. We’re not expecting them to sell out, but the price could shoot back up at any time, so make sure to take advantage of the $89 savings and pick yours up soon.



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