From Galileo peering through his telescope (about the same magnification as a decent pair of binoculars, according to the guide at Kitt’s Peak National Observatory), or the Wright brothers launching themselves skyward, there’s magic in science, hope in discovery. Today, the fear of polio doesn’t haunt every mother and measles no longer kill millions each year.  Cancer patients are living longer than ever after diagnosis.

Behind the headlines, there are people. Dedicated researchers searching for answers, advocacy groups fundraising to look for cures. And there are clinical trial participants.

Cancer Hope Network cancer support mentors can help

Cancer Hope Network’s Talking About Clinical Trials (TACT) program connects patients considering a clinical trial with a trained survivor mentor who was also a study participant.

Have questions about the signup process? Overwhelmed by paperwork? Hearing concerns from family? Talking with a TACT mentor is a chance to get firsthand answers. TACT matches – the connection between a volunteer and a support seeker – are free, confidential and available by phone. (request a peer support match today)

Research creates hope

“I encourage the patients I talk with to hold on to hope,” says CHN Support Volunteer Ann, a bladder cancer survivor and caregiver. “Don’t lose faith. They’re coming out with new research, new information and new drugs every day.” That hope is becoming a reality because of patients participating in trials. Lung cancer survivor Ellen feels fortunate to have been diagnosed now. “We’ve made more headway in the past five years than we’ve made in the previous 20.” Ellen and Ann are not alone in their passion for the hope research provides. Cancer Hope Network’s 400+ Support Volunteers have participated in clinical trials at more than twice the national rate.

Clinicaltrials.gov tells us more than 350,000 trials are active today. Some will succeed, and some will head back to the lab for further study.Thanks to researchers and patients in search of discovery’s magic, many of those trials will chart a path to new gold standards of treatment.

As with Edison’s “10,000 ways that don’t work,” some trials end without reaching their intended endpoint. But there’s magic along the way. Support Volunteer David, a glioblastoma survivor, participated in a double-blind study. When the study ended, he discovered he’d been in the placebo group – but that the organic carrier (included to mimic the side effects of the active drug) may have been helpful in keeping him alive. There are always reasons not to explore, to wait until the magic is tested and accessible.

For scientists, discovery sometimes means challenging long-held beliefs (see also: Galileo).
For pioneers venturing into the great unknown, there was certain hardship.
For patients facing cancer, there are reasons too – including not knowing about available trials and fear.

Trials can help participants find hope

Potential cancer clinical trial participants must balance the unknowns against possibility and hope. Support Volunteer Paul valued the possibility of more time spent with loved ones. His clinical trial lowered his blast score enough to make him a candidate for a life-saving transplant to treat his Acute Myeloid Leukemia and allowed him to attend his 55^th college class reunion. Support Volunteer Hank began taking experimental treatments when his deep-seated melanoma metastasized. That treatment helped him “hold on as along as possible so they could develop something that could work” over the long term. Today, he’s actively volunteering to help others.

Cancer research helps others

For others, the magic is in the possibility of helping others – like colon cancer survivor Support Volunteer Michael. “The empathetic nature and persuasiveness of my oncologist convinced me to take part in a study. I wasn’t promised it would be the greatest thing since sliced bread, but I’d be helping others.” Breast cancer survivor and caregiver Support Volunteer Linda agrees. “The studies are wonderful. You’re saying ‘yes, I’d be happy to be a guinea pig’ because it might help someone else. I would do the study again.” Support Volunteer Kent’s participation in a clinical trial saw him through aggressive prostate cancer – and the launch of the drug whose efficacy he’d been helping to test.

At CHN, we’re staunch believers that patients and their loved ones must be champions of their own health. For some patients, that may mean participation in a clinical trial. Our volunteers stand ready to help as possible participants navigate the decision-making process and treatment. Request a Talking About Clinical Trials match or call 877-HOPENET to speak to a member of our Programs Team.

We are indebted to the brave women and men who have ventured into the unknown – and created magic. Thank you.

About CHN
Cancer Hope Network provides free one-on-one peer support to adult cancer patients and their loved ones.

Our survivor and caregiver peer mentors have faced more than 98% of the cancers that will be diagnosed this year.) Together with our caregiver volunteers, they provide support from diagnosis, through treatment and into survivorship. Our team of social work and healthcare professionals oversees all volunteer and client matches.

The post In Celebration of Modern Magic: Clinical Trials appeared first on Cancer Hope Network.

Unfortunately, the scan revealed polyps – some clearly benign and others not so clear. He scheduled laparoscopic surgery to remove them “to be sure.” What was supposed to be routine surgery quickly became something else.

“I went in to have it removed laparoscopically. Five hours later, they’ve removed a cyst the size of a meatball, along with 14 inches of colon. My surgeon, Dr. David Ward sent the cyst to the lab and gave us the dreaded diagnosis and recommended an oncologist to help us move forward.” His oncologist, former CHN trustee Ken Adler, walked him through the benefits of chemo therapy (a reduced risk of recurrence) and suggested that, based on his markers, Mike would be the perfect candidate for a clinical trial in addition to the gold standard treatment he’d be receiving.

The trial was testing the efficacy of drugs that had been successful fighting other cancers. Instead of 3 hours for each chemotherapy treatment, Mike would need to stay for six. Plus, he’d be required to extend his treatment for six additional months.

Dr. Adler explained the pros and cons carefully, showing the empathy that is his hallmark. Even facing cancer, Mike wanted to help. He signed up.

“The additional drug we were testing had minimal side effects. I was never promised that the treatment would be the greatest thing since sliced bread, but I knew it’d be helping others,” he reflects. “What did I have to lose, other than time?”

Mike counts himself lucky. He views initial diagnosis as the most difficult part of his fight. “People die from cancer. It was an initial shock. But it became much easier after that.”

He worked through treatment, even travelling a bit. “I was lethargic, but not sick. I forced myself to get busy, get in the shower, stay busy. I got up every day with a sense of purpose. That’s what kept me going, what gave me the energy to keep moving. I was lucky. After speaking to so many others about their reactions to chemotherapy, my reaction was in the top 10% best possible version.”

A self-described “healthy guy,” he recalls feeling fortunate while getting his weekly infusions. “How could I possibly feel sorry for myself? I’m here once a week, there’s a woman who’s had every day treatments for 28 days. There’s a parent whose kid is receiving treatment. It was easy to keep a positive attitude because others had it so much more difficult.”

Plus there’s Mike’s sense of humor. His weekly treatment included a bag of medication that he carried with him. “If you go in Wednesday for three hours, you leave with a bag and a wire and have to come back Friday to give it back. I was receiving chemo, but I could go to work. I put the pouch on my belt, hidden under a sport jacket. Guy asked what was in the pouch and I responded honestly – FU. (the name of his drug)”
For ten years, he’s channeled his zest for life and sense of humor into helping others as a CHN Support Volunteer. “On some calls, the person is initially very reticent about saying anything to me. I’m just a voice on the other end of the phone. When they realize I’ve had the same diagnosis, treatment and issues they’re facing, they open up. A lot of people need some kind of cheerleader. They need reassurance from someone who has been there, done that. I become that cheerleader.”

He encourages anyone diagnosed with cancer to get connected to a Support Volunteer. “So many people have well-meaning people in their lives who don’t know how to handle it. To call on someone who went through what you are makes life a little easier.”

Today, the husband (he and his wife will soon celebrate their 45^th anniversary), father and Army veteran who served in Vietnam is enjoying the life he once dreamed of, full of good health, golf and travel. Best of all, there’s lots of time with his grandson – “Having a grandchild is like eating all the ice cream you want and not gaining any weight.”

The post A bag of FU and hope. appeared first on Cancer Hope Network.

After one day with particularly swollen ankles, she had an ultrasound to look for a cause. The results came back after she’d returned to work. Her doctor called with a simple message, “You have a huge blood clot. You need to get off your feet now, go to the emergency room and get a blood thinner ASAP.”

She began treatment for the blood clot but the symptoms persisted. Further testing revealed that what her doctors had thought was a swollen lymph node was actually an enormous mass. They moved into crisis mode. “It was Christmas time. We couldn’t get anything scheduled. I finally got a biopsy. They figured out what I had and I started radiation and chemo. It was the worst Christmas ever.”

Although her medical training in pediatrics helped make sense of the jargon floating around her diagnosis and treatment, Jenn found new perspectives on the other side of the gown. Her first bout of radiation left her throwing up, unsure if she could go through the second treatment. Luckily, the tech on duty recognized the classic signs of radiation poisoning and Jenn’s care team was able to find medication to minimize the symptoms.

It was a lesson she’ll never forget – and one she shares with her matches. Patients should discuss preventive medications with their doctors before chemotherapy or radiation. That conversation could end up making a dramatic difference in quality of life.

“People have an expectation of being sick and vomiting all the time,” she says. “There are great medicines to help control vomiting and nausea. There’s no reason you have to feel that way all the time. I’ve been on chemo for seven years and have only thrown up a few times.”

She encourages that advocacy in all aspects of life with leiomyosarcoma – or any cancer. “Ask. Ask. Ask. Build relationships. Talk to the social worker. It’s good to have a contact person after you’ve been released.”

Jenn’s life post-diagnosis has been a series of ups and downs that included searching for a job while undergoing radiation. “I’d get radiation, pop a pill and get on a plane to go to an interview. I didn’t make a big deal of it, but I decided to share that I was in treatment with potential employers.”
She underwent surgery, where doctors removed a major vein, her right kidney and adrenal gland. Complications from her recovery led to gallbladder attacks, terrible chest pains and more surgery, which led to the discovery that her cancer had spread.

Today, she gets scans every four months and has found equilibrium on an oral chemotherapy. “I’ve been on this chemo longer than pretty much anyone else. Most people are only on it for about a year and I’ve been on it for five years. There’s no hard precedent of what the right treatment is. There’s no protocol. It’s an ongoing conversation with me, my husband and my oncologist.”

Through her diagnosis, treatment and recoveries, Jenn and her husband have been surrounded by a community of loving family and supportive friends. It wasn’t easy making the transition from helper to helped.

“I learned how to be vulnerable and to ask for help,” Jenn recalls. “Which was not in my wheelhouse. I always felt guilty asking for help and I’d taken it as a great point of pride to be independent. But I’ve learned that people want to do something.”

And “do something” they did. From homemade food (“When I was first diagnosed and going through treatment, people made meals for us. Once a week, our friends would bring us a meal and it was often enough that we could eat for a couple days. It wasn’t too much – and it was spaced out.”) to pajamas (“Sometimes you have to wear the hospital gown, but not always. Pajamas were a nice change.”), a hypnosis tape (“My friend is a psychiatrist. She tailor-made relaxation tapes that helped me envision my immune system fighting the cancer.”) and even taking shifts to watch over her (“After surgery, my leg was paralyzed, but I had to get up every two hours to go walk to deal with the nerve pain. We had people come stay with us for a week at a time and get up with me every other night. They’d take turns getting me up, helping me. Some of these people were taking their vacation time to care for me.”)

That patchwork of love and care made all the difference. “We were grateful to have so many people who were willing to make a sacrifice to take care of me – to take care of both of us, really.”Jenn recently celebrated her 43^rd birthday. After nine years of poking, prodding, treatment and surgeries, age is something to be embraced. “This birthday was one I never thought I’d see. I don’t mind getting older, because I am actually living to see another birthday. And that, to me, is a big win. I’m proud of making it this far.”

After nearly a decade of uncertainty, she and her husband are making “leaps of faith, making commitments.” They’ve adopted a dog Piper and are looking to the future. “I feel like we are finally able to start moving forward with our lives. We’re moving out of the holding pattern we’ve been in since I was 34.”

“My surgical oncologist was ever the optimist,” she recalls when asked about the best advice she’s ever received. His advice was simple, but profound. “Don’t let cancer take any more from you than it’s already taken.” Jennifer has put that advice into practice. “It’s easy to catastrophize things, to make something worse than it actually is. Yes, my diagnosis is terrible, but we really have to cling onto the things that are important to us – our friends, building relationships, taking opportunities of joy and not wallowing in self pity.”

It’s in that spirit that she began volunteering as a CHN Support Volunteer. “If I can make anything good out of this situation, if my experience can help others, that’s another way for cancer not to take away so much.”

Need perspective? Looking for some encouragement through a tough diagnosis or into survivorship? Get matched with Jenn – or another Support Volunteer who has been where you are.  Click HERE or call 877-HOPENET (877-467-3638) today.

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