After cooling her scalp and saving her hair for chemotherapy, the Venetian woman started a fund to help others

 Explanation: Both Dignitana and Paxman scalp cooling systems have FDA clearance. The FDA does not have an approval track for such devices. The first version of this story said otherwise.

VENICE - Soon after Holly Mori was diagnosed with breast cancer last July, she and her husband Tony took their daughters Cecilia and Snowden to the beach to break the news.

He explained that Holly would be weakened by chemotherapy and her hair would fall out.

Tony Morye said Cecilia, now 13, pretended to take him well, but Snowden, now 9, had many questions.

This was before Mowry learned to cool the scalp in order to reduce the effects of chemotherapy drugs on the hair follicles.

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After learning that she had breast cancer, Holly Mowry chose to use the DigniCap scalp cooling system to treat the cancer. H. Lee Moffat Cancer Center and Research Institute in Tampa. After completing this part of her chemotherapy, she and her husband Tony chose to start a fund with the Team Tony Cancer Foundation to help those who cannot afford treatment.

Mowry, who was treated at the H. Lee Moffat Cancer Center and Research Institute in Tampa, used the Degni Cape Scalp cooling system to help keep her hair safe, while the treatment sessions lasted six to eight hours.

Mowry underwent six rounds of breast cancer chemotherapy - once every three weeks until December 2, 2021 - and each time wearing a Dagnetana hat.

"It's not much fun, but as you can see, I have all the hair," she said.

"I lost 50% of it," he added. "So it's here and there and it's moving back and it's a little annoying."

The DigniCap used for scalp cooling therapy at both the H. Lee Moffitt Cancer Center & Research Institute in Tampa and Florida Cancer Specialists in Sarasota consists of a silicone inner cap and a neoprene outer cap.

Because Tony is an attorney and works with the Holy Gulf Coast Community Foundation, the couple can afford the treatment - which is not usually covered by insurance and can cost up to 3,000. ۔

"As soon as I arrived at my cancer screening where I knew I might be alive, it became really important for me to help other cancer survivors," she said. "I work for a nonprofit so my life is spent with other people and people who are less fortunate and what can I do for them. I had to have hair because I could bear it and other women did not.

The story continues.

Team up with Tony

The couple considered raising funds to help those who could not afford to pay for hair care during chemotherapy.

"I saw the benefit in that, from his point of view, from my point of view, and from the point of view of our children," said Tony Morye. "Unless it's covered by insurance, it's something we felt everyone had a choice to take advantage of, as we did."

In March, the best opportunity presented itself.

At the couple's favorite pub - Off Trail Bike & Brew, the Venice owner needed someone to cover the bar, so he could fill up for the kitchen.

Tony, who oversees the bar while attending law school at Temple University in Philadelphia, agrees - whatever advice he gives can go to his still-established fund to help cancer patients.

"We didn't even contact Team Tony when we decided to do that," recalled Tony Morye. Holly immediately contacted them.

"We built the plane when it flew this week," he added.

The team, the Tony Cancer Foundation, named after founder Tony McEchron, matches cancer patients with cancer survivors - fighters and survivors, as noted by Executive Director Kelly Dame. One-on-one guidance. "So that they have someone who has gone through the journey to help them, to answer questions about fears and emotions and to answer all the things that happened during their treatment. Are passing, "he added.

As part of this outreach, Team Tony has a medical aid fund that can help cancer fighters pay for treatment.

In this case, the funds raised by Mowrys are earmarked for cooling the scalp.

Tony Moore tented the bar from 3 to 8 p.m. On March 26 - something the couple promoted on social media - and tell those who can't tell if they can donate in an online effort.

All donations were made through the Louis & Gloria Flanzer Trust program, which basically matches individual donations up to $ 500 to double the amount.

"It was really busy, we raised a lot of money," said Tony Mowry, who joked, "Which is not a good day to learn to use the point-of-sale system."

Mowry added significantly to the treatment of two cancer patients. They are planning additional fundraisers - including a 5K run using Off Trail as their home base - and they can make the presence of a guest bartender an annual fundraising event.

Holly Mowry said she had two goals in starting the fund. One is to help people who can't afford hair salvage treatments and the other is to help increase the number of women seeking treatment. "So insurance companies can look at it and say, 'It works, It improves mental health, maybe even improves cancer outcomes. "

Low awareness and high cost

Nancy Marshall, one of the co-founders of the Rapunzel project, said awareness and cost are important barriers to increasing the use of cold cap therapy or scalp cooling systems to keep hair safe during chemotherapy.

Marshall and Shirley Bulgmeier founded the Repenzel Project in 2009 to raise awareness of both scalp cooling systems, as well as several fundraising efforts to cover the cost of any therapy, which https. can be viewed at: //www.rapunzelproject. org.

There are some national efforts, especially https://www.hairtostay.org.

"I would love to hear about these local initiatives, big or small; every one of them is welcome," said Marshall, when Morris was told to raise funds with Team Tony.

Marshall mentioned several successful regional efforts but was particularly excited about Cap and Conquer's efforts in Michigan, which was founded by six women.

The nonprofit, https://www.capandconquer.org raised more than $ 137,000 through a golf tournament last August.

"These six young women are just killing him," Marshall said.

All of these independent fundraising efforts are urgently needed.

Although many insurance companies will easily cover the cost of wigs to mask hair loss, they are slow to complete the scalp cooling therapy, which was introduced in the late 1990's. Came up with therapy.

Patients with scalp cooling therapy should purchase a kit from a vendor - in this case Dignitana - and then buy time on a machine that circulates cooling fluid around the scalp during chemotherapy treatment.

Scalp cooling therapy works to prevent hair loss in men and women but is often associated with women undergoing chemotherapy for breast cancer.

Kathy Robinson, nurse manager with Florida's oncologists in Sarasota, says she tells patients who use DigniCap treatments there to "save every treatment you have and submit it to your insurance company." Some insurance companies are paying for it. You never know. "

Marshall said the approval is tainted and often involves appeals.

"Sometimes it just depends on which adjuster you get," he added. "You find someone who has cancer and he loses his hair and he is sympathetic, somehow the claim is accepted."

Medicare's decision to cover some of the costs, starting in 2022, has created a gray area, as Medicare will only pay for clinics where chemotherapy is administered.

Meanwhile, in the general billing process in clinics that use the two most popular skull cooling systems - Dignitana and Paxman - patients deal directly with the manufacturers, although some clinics may charge an administration fee.

The Dignitana and Paxman systems are used in many large centers throughout Florida. Both systems have FDA approval.

Patients who use the Dignitana system do not pay for more than nine sessions - after which they are free.

Paxman puts the out-of-pocket cost for patients at $ 2,200.

The Rapunzel Project maintains a national list of where those systems are located, as well as facilities that include medical grade freezers that can store cold caps.

Marshall says cold caps - which can be stored and transported in dry ice - can be used on facilities that do not have medical grade freezers.

Locally, Moffat and Florida oncologists are more or less excluded from the scalp cooling procedure. Patients purchase their initial cap kits from the supplier and then purchase the treatment time on the machines directly from the supplier.

Two ways, one goal

Patients who choose the old cold cap system rent from cap suppliers between four and eight caps - Billigmeier and all founders of Cap and Conquer use all Penguin Cold Caps - which are either medical grade freezers or dry. It is kept cool in the snow.

Cold hat patients should bring a friend or family member to help replace the cold caps through the chemotherapy procedure or pay an assistant, as the hats get hot.

Typically, they change every 25 to 30 minutes.

Cold caps usually start at -22 degrees Fahrenheit, which is -30 degrees Celsius, and then heat up slowly until they change.

In contrast, skull cooling machines keep the patient's head at a constant temperature of 3 degrees Celsius or 37.4 degrees Fahrenheit.

For any procedure, cooling of the scalp begins about 30 minutes before the start of chemotherapy.

Patients who use a scalp cooling system apply it for about two hours after chemotherapy, as the medicine thins.

Patients with cold hats may wear their hats longer, as they may leave the infusion chair and wear their hats in the waiting room - or even on a home trip.

Dagantana conducted a study which found that about 72% of her patients had at least 50% of their hair.

The Mayo Clinic - which uses the Paxman system - cited another study that found that 66% of patients who cooled down to 32 degrees experienced a hair loss of 50% or less.

More than half of the patients in the control group who did not use the cooling system lost their hair.

Penguin Cold Caps cited a study in which 8 out of 10 users retained more than 50% of their hair - but it was a small, 10-person study.

Cooling reduces blood flow.

Cooling caps work partly because vasoconstriction in the scalp reduces blood flow, said Amy Bucciarelli, Clinical Operations Manager at the Infusion and Blood Draw Center at the McKinley Outpatient Center for Moffitt.

"It reduces the amount of chemotherapy agent that reaches the hair follicles and then lowers the temperature of the scalp, reducing the reaction rate so that normal cellular activity is localized to this part of the scalp." So it helps to slow it down dramatically.

McKinley Campus was a beta test site for Dignitana.

The scalp cooling cap is attached to a proprietary machine - in this case made of Dignitana - that circulates the cooling fluid around the scalp. A patient can be removed from the machine for a short period of time.

"We've done over 1,000 treatments here on our campus," Bucciarelli said, adding that data collected on Moffitt and other sites influenced the design of the new machine, which will be unveiled in October 2019.

"I've been a nurse for 38 years and I've worked in oncology since the '80s," said Bacarialli. "When we first started doing this, we used a tourniquet and a cold hat that was kept in the refrigerator - literally.

"The technology is amazing because the coolant fluid moves throughout the cap, cooling the cap to 3 degrees Celsius."

Cooling therapy works better with some medications than others and is effective for solid tumors - breast cancer, gynecological cancer, prostate cancer - but not for fluid and blood cancers.

Some patients cannot tolerate the cold, while others may have claustrophobia because of how the cap fits above the head and below the chin, Bacaryelli noted.

Robinson, the nurse manager of oncology specialists in Florida, noted that some patients are immediately frightened by hair loss during the procedure.

"We need a lot of encouragement from the patient to tell them it's all about recurrence," Robinson said. "Finally, a few weeks later, when he treated himself, he looked like a Chia pet and he was thanking us.

"We have good success with re-development and that's what you need to train people," he added. "You're going to have some wind damage, but it's all about what's going to happen next, protecting those flaps."

A way to maintain identity

The DigniCap is worn in Mowry Moffitt and includes a silicone inner cap and a neoprene outer cap. All should fit as tightly as possible and then fitted to the hose with the cooling machine.

"It's sad, it's not a fun experience," said Mowry. It's too cold.

"Moffitt's CSAs are the real heroes in this process, they are the ones who are most trained to do that," Mowry said. "It's really important that you get it right, otherwise it's not going to hit all the right places.

Sometimes assistants had to wear the hat more than once before it could fit properly.

Once that happens, "it's like the worst ice cream headache you've ever had," Mowry said. "You want it close to your scalp because you're basically putting your scalp in hypothermia."

"After a while it becomes numb and you can't feel it anymore," he added. "And then when they take it off, they have to wait. So they unplug it, turn it off and then they have to wait for it to melt."

Mori, who is still being treated for cancer but with a drug that does not require cooling the scalp to keep her hair safe, said most of her hair loss is caused by the edges of the cap and Comes around the crown of the head.

"It wasn't like a bald spot, it was just connected to each other, so it didn't look like I was losing my hair - unless you know," he said.

Instead of just accepting hair loss and wearing a wig, Mowry said she chose to cool her scalp with her chemotherapy to preserve her identity.

"When you are diagnosed with cancer, it kills you. Everything revolves around it," Mori said. "It simply came to our notice then.

"I didn't want to be: a cancer patient," he added. "I'm a mom, I'm a wife, I'm an employee, I'm a friend - that's all, and I'm a cancer patient."

"It's a part of my life that I'm going through and I'm going to survive cancer.

"So I didn't want to look in the mirror every single day and be reminded, 'Oh you have cancer, you have cancer, you have cancer.'

Mowrys, meanwhile, wanted to keep things as normal as possible for Cecelia and Snowden.

Marshall, who did not need chemotherapy to fight cancer on his own, said most people who choose to keep their hair safe do so for reasons such as Moryy.

"It's very little about falsehood. It's a lot about identity," Marshall said. "It looks like you, it doesn't look like a sick person, it doesn't look like a stranger in the mirror.

"Very few patients tell us it's about falsehood - it's about empowerment and it's about identity.

"When your hair falls out, that's everyone's business," he added. "People feel entitled to offer you good wishes, advice, all sorts of things - but not every parent wants or needs it and they will definitely prefer who it is from. Comes.

"Whose business is it? I don't know if you can put a price on it."

Earle Kimel covers South Sarasota County primarily for the Herald-Tribune and can be reached at earle.kimel@heraldtribune.com. Support local journalism with a digital subscription to the Herald-Tribune.

This article originally appeared on the Sarasota Herald-Tribune: Woman launches fund for chemotherapy to help others cool their scalp.