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The life-saving treatment that’s being thrown in the trash – Ars Technica

March 30th, 2017 9:49 pm

Enlarge / A little needlework and blood has never looked better.

MaricorMaricar @ Handsome Frank

A few hours before beginning chemotherapy, a man named Chris faces his cellphone camera with a mischievous smile and describes a perfectly absurd milestone at 1:37pm on a Wednesday. There is no more beautiful moment in a mans life he says with puckish glee. Because how can you not laugh when youve been invited to bank your sperm in advance of being Godzilla-ed with chemotherapy and radiation, all just four days after being diagnosed with acute myeloid leukemia at the age of 43 and given a 5 to 15 percent chance of survival?

Oh, and the fertility clinic forgot to send someone over with a specimen kit, and theyre closing in little more than 20 minutes, so you have to fire up your iPad for some quick visual stimulation to help you fill a sterile tube. Just try to ignore the legal consent paperwork all around you and the catheter thats been surgically inserted into your jugular vein.

And because there are no couriers available, your sisterwho has been running half-marathons to get in shapegamely volunteers to tuck the freshly filled tube in her sports bra to keep it at body temperature before dashing the mile to the clinic. You imagine her arriving as the window is closing, lurching towards the counter and shouting Nooooo! in the slow-mo way they do in action movies. She hands over her precious cargo in the nick of time and triumphantly exclaims, This is my brothers!

Nothing is normal about leukemia or its aftermath, and Chris Lihosit has chosen to cope by learning everything he can about the disease and poking fun at its many indignities and absurdities. While some people with cancer are reluctant to share because they see it as a sign of weakness, he knows that humour and openness have a way of breaking the ice and maintaining visibility.

On the last day of 2015, Chris received one of the estimated 40,000 umbilical cord blood transplants performed around the world to date. Cord blood contains what are known as stem cells and progenitor cells, which can give rise to oxygen-carrying red blood cells, infection-fighting white blood cells, and clot-forming platelets.

Transplanted cord blood can be used to treat or cure more than 80 conditions, from leukemia to sickle-cell disease. Based on current research exploring autism, brain injury, cerebral palsy, type 1 diabetes, and cardiovascular disease, among others, the list of potential applications is likely to grow. Emerging strategies are even transforming cord blood left over after birth into a potent potion that might provide lifesaving treatments for victims of a nuclear disaster.

Stem and progenitor cells are also found in the spongy marrow within some bones and in the blood that circulates around our bodies. But cord blood, once dismissed as medical waste, is particularly rich in these cells. As researchers are discovering, it may carry other significant advantages, too.

While a cord blood transplant might save your life, though, going through the process and then starting anewyour survival down to an anonymous babyis far from easy.

The first cases of leukemia were documented some 200 years ago. The earliest known reports, by Scottish surgeon Peter Cullen in 1811 and French surgeon Alfred Velpeau in 1827, chronicled a baffling ailment marked by an enlarged spleen. Cullen described the mysterious transformation of his patients blood serum from a clear pale yellow to a milky liquid. Velpeau was just as astonished by what he likened to a thick gruel, leading him to conclude that his dead patients blood was full of pus.

As we now know, bone marrow produces cells called blasts," which take time to grow into infection-fighting white blood cells. But leukemia sends production into overdrive, filling the blood with blasts that dont develop as they should. This army of immature cells crowds out the useful ones, leaving the host highly vulnerable to internal bleeding or foreign invaders.

Although the risk factors for leukemia are only partly understood, scientists have linked it to genetic disorders such as Fanconi anaemia and Down syndrome, and to exposure to radiation or toxins like benzene. The out-of-control growth of abnormal white blood cells, though, has provided an opening for drug and radiation therapies that selectively cull the bodys fastest-growing cells. As a last resort, doctors may deliberately kill off all leukemia-riddled blood and bone marrow cells and attempt a full reset with someone elses blood-forming stem cells.

In early August 2015, Chris Lihosit fell ill with an exhausting, dehydrating, and pajama-soaking fever that mysteriously disappeared two days later. During a check-up, on his 43rd birthday, his doctor named summertime flu the most likely culprit.

Then the same thing happened again, and it settled into a disturbing pattern: midweek chills and an escalating fever that would break on Sunday. By Monday, Chris would feel fine, only to have the sequence repeat itself. He joked about it with colleagues at T-Mobile, where he works in software development, Well, I hope its not cancer!

On alternating weekends from May to October, Chris would volunteer as a backcountry ranger for the US Forest Servicea physically demanding role that involves patrolling Washingtons Cascade Mountain forests and hiking along high-altitude trails with a backpack that can weigh up to 32 kilograms. But now, even at sea level, he was getting winded just walking his two dogs around the block. What the hell was going on?

A medical appointment revealed a heart murmur and suspicions of endocarditis, an infection of the hearts inner lining. The scare triggered another series of tests that led Chris and his husband, Bill Sechter, to Emergency Room 4 at the University of Washington Medical Center.

A whiteboard checklist documented his Saturday morning: insertion of a large-bore IV as a potential conduit for antibiotics, a round of blood draws, and discussions with the ER doctor. Then the phone rang and the nurse answered, listened and responded to multiple questions in quick succession: Yes. Yes. Oh, OK. OK. Yeah. He excused himself from the room and soon returned in a full hazmat suit," as Chris describes it. Yellow.

And thats when we were like, Oh shit, its on. Something is seriously bad.

Chris learned that his level of infection-fighting neutrophil cells, normally churned out by the bone marrow, had fallen so low that his defences were in tatters. He was also severely anaemic, with roughly half the normal amount of red blood cells in his blood.

It wasnt endocarditis. And when one of his doctors performed a blood smear, she saw something on the microscope slide that shouldnt be there: blasts. These leukaemic cells, stuck in adolescence, were the harbingers of the coming horde that had so astonished 19th-century surgeons.

The doctor apologetically broke the news, and Chris and his sister dissolved into tears. In an emotional Facebook post later that day, he attached a picture of himself in a hospital gown and pink facemask and wrote: this avowed agnostic could actually go for your good juju / positive thoughts or even your (gasp) prayers.

More tests, including a bone marrow biopsy of his pelvic bone, painted an increasingly disturbing picture. He had acute myeloid leukemia, a fast-progressing cancer. The biopsy suggested that an astonishing 80 percent of his bone marrow cells were cancerous. Strike one.

Other results suggested that chemotherapy wouldnt be as effective on his form of leukemia. Strike two.

And genetic tests put him in the unfavourable risk category by revealing that his cancer cells carried only one copy of chromosome 21, a rare anomaly associated with dismal outcomes, according to recent studies. Strike three.

Chris needed to start chemotherapy immediately. But first, he had his sperm banked. Then, with family and a close friend at his side, he celebrated his impending treatment with prime rib and cheap champagne smuggled into his hospital room.

Over three days, he received multiple doses of the anticancer drugs cladribine, cytarabine, and mitoxantrone, the last a dark blue concoction often dubbed Blue Thunder." The drug turned his urine a shade he describes as Seahawks green in honour of Seattles football team. Other patients have had the whites of their eyes temporarily turn blue.

On the third night of his drug infusion, a sudden back pain grew into an intense pressure in his chest that felt like he was being stabbed. A heart attack? An emergency CAT scan instead revealed two newly formed blood clots: one in his right leg and another in his right lungnot uncommon consequences of chemotherapy.

Over the next six months, Chris would need transfusions of blood-clotting platelets whenever his level of them dipped too low, and daily injections of a blood-thinning drug whenever it rose too high. Thirteen days after being admitted into the hospital, he posted a more hopeful Facebook entry: And Im finally going home! Now the real adventure begins.

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The life-saving treatment that's being thrown in the trash - Ars Technica

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