Wednesday, April 8, 2015

What One Woman Learned After Caring For Her Husband Through Lung Cancer

Posted: Updated: 
LAURA POST
In 2005, Laura and her husband Tim opened a bakery in Ypsilanti, Michigan, fulfilling a lifelong goal of Tim's. In July 2012, Tim was diagnosed with stage IV lung cancer. He died in October 2013 at age 53. This is Laura and Tim's story.
How It Happened: In May 2012, my husband went out of town to a car show. It was inside a tent and when he came outside, his left eye was clouded over. He went to a regular eye doctor, who referred him to a specialist. I live in Ann Arbor and the Kellogg Eye Center here is pretty famous, so he went there. The doctor knew immediately what this was associated with and ordered a scan. It was the day before the Fourth of July. My husband had the scan and the day after, while I was at work, he went to review the results with his primary-care doctor. They called me immediately. You get really shellshocked -- that’s the first, sort of awful part. Then the road opens up and you have no idea what’s on that road.
Before the treatment could even start -- a week later, my kids called me at work. “Mom, something’s wrong. He’s in pain.” Compression fractures had occurred in his spine. He was rushed to the emergency room. Then it’s these sort of spiraling events. All these things start happening all at once. It’s tough, physically and emotionally. They don’t show you the scans, they tell you about them. I remember one of the oncology doctors, midway through radiation, actually pulled up the picture of his spine with tumors in it. It makes you want to faint.
You are trying to figure out the logistics of everything. The logistics are harder than anybody can really ever imagine. It’s not where everybody sits around and has a nice meal and listens to nice music. It’s not like that. It’s trying to help your husband keep food down and keep him comfortable. You are on-call every second of the day. As a caregiver, you get your adrenaline levels going and after a while they get completed depleted.
I grew up with a dad who was a cardiologist, and people died suddenly from heart attacks all the time. I knew that this could happen. Death happens. My husband had never thought about death. He really didn’t know how to process it. He just wasn’t that kind of person. He had no concept of what was going to lie ahead of him.
tim post
How I Coped: In February 2013, I remember walking out to my car, my brain just in turmoil. There was all this talk of divorce and crazy stuff. A friend of mine, who’s big into yoga, took a CD out of her car. She goes, “Take this.” The CD was by a yoga instructor she was friends with, and it was really him just talking the listener through closing her eyes and breathing. The minute I put that CD in my car, that’s what I did every day. I started with meditation. What you’re doing is letting go for a moment. You can’t control the situation, but you need to think clearly to understand how to navigate it. I grew up in the sixties in Kentucky. It’s a little traditional -- you don’t grow up with that whole thing about taking care of yourself. I had to read a lot of articles about how it was okay to take care of myself.
Where I Stand: People sit back and think, “I can’t believe somebody is going to not fight this thing.” Well, it’s the stupidest fight on the planet. Why spend your energy fighting something if you can end things with your family in a peaceful, loving way? I told people at work: If my husband had gotten diagnosed and died suddenly, I’d be sitting here, in the middle of 2013, crying because I had lost the love of my life. Here I was in the middle of 2013 praying. Really praying, that God, or nature, or the universe, would just take him. It’s really hard on the family.
I realized that if I were faced with my own diagnosis, if it were one like lung cancer, I would never go down that path. Not because I don’t believe in medicine, or society, or because I’m really negative. I just know that for me personally, it wouldn’t be worth it. I sat there in oncology -- I didn’t even sit in the waiting room, I sat near the radiation because I had to help my husband in and out of his room. I saw him in all kinds of situations and it was pretty eye-opening. I know personally, I would choose death.
What I Learned: I told Tim when he started his bakery, “Do this now, sweetheart.” It was a great move for him and I’m so glad we did it. I remember telling him, “Do this because you don’t know what your life will bring. You don’t know when you’re going to die or when something will happen to make you not be able to do this.”
Now that it’s over, the other half of it, I have to say, is that life never looked so beautiful. When I go on a walk, I am literally smiling. I thank God every day that I can walk. It changed my whole perspective on the beauty around me. That’s the good part that comes out of it.
My daughter convinced me to join the Y that’s not too far from our home. I walk down that street -- my husband and I had a couple of friends who lived on this street, way back before kids. I walk by those houses and I go, “That’s right. We used to have a great time.” That’s the piece that is remaining, luckily. Through the whole grieving process, I never thought that any of that good stuff would come back, but it did, in an even bigger way. It’s hard not to walk by those houses and start to laugh and smile and appreciate life.
As told to Erin Schumaker. This email and interview have been edited for length and clarity.
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Friday, April 3, 2015

Mouth sores caused by cancer treatment: How to cope

Understand how to manage cancer treatment side effects, including mouth sores, so you can feel more in control as you go through cancer treatment.
By Mayo Clinic Staff
If you're about to begin cancer treatment, be aware that certain treatments can cause mouth sores (oral mucositis).
Mouth sores can be painful and distressing. They can range from a mere inconvenience to a severe complication that may make you unable to continue your cancer treatment.

What are cancer-related mouth sores?

Cancer-related mouth sores are sores or ulcers that form on the inside lining of your mouth or on your lips. The mouth sores appear burn-like and can be painful, making it difficult to eat, talk, swallow and breathe.
Sores can appear on any of the soft tissues of your lips or your mouth, including your gums, your tongue, or the roof and floor of your mouth. Sores can also extend into the tube (esophagus) that carries food to your stomach.

How do cancer treatments cause mouth sores?

Chemotherapy and radiation — alone or combined — can cause mouth sores. That's because these cancer treatments are intended to kill rapidly growing cells — such as cancer cells.
Some healthy cells in your body also divide and grow rapidly, including the cells that line the inside of your mouth. Unfortunately these healthy cells are also damaged by chemotherapy and radiation.
Damage to the cells in your mouth makes it difficult for your mouth to heal itself and to fend off germs, leading to sores and infections.
Chemotherapy and radiation both can impair your body's germ-fighting system (immune system). With an impaired immune system, viruses, bacteria and fungi can more easily infect your mouth, causing mouth sores or making mouth sores worse.
Bone marrow or stem cell transplants also can lead to mouth sores if you develop graft-versus-host disease (GVHD). In GVHD, the transplanted cells or stem cells try to reject your body's normal cells. The transplanted cells view your body's cells as foreign and attack them. Mouth sores are just one sign of GVHD.
Here's what you may experience with each type of cancer treatment.

Chemotherapy

Whether you experience mouth sores while undergoing chemotherapy depends on the type and dose of medication you receive, as well as how often you receive your treatment. The chemotherapy drugs most likely to cause mouth sores include:
  • Capecitabine (Xeloda)
  • Cisplatin (Platinol)
  • Cytarabine (Depocyt, Cytosar U)
  • Doxorubicin (Doxil)
  • Etoposide
  • Fluorouracil (Carac, Fluoroplex, Efudex)
  • Methotrexate (Rheumatrex, Trexall)
Mouth sores caused by chemotherapy treatment usually develop a few days after treatment begins and go away within two or three weeks after stopping chemotherapy. The mouth sores usually reach their peak around the seventh day after chemotherapy treatment ends.

Head or neck radiation therapy

Only radiation aimed at your head or neck causes mouth sores. Whether your radiation treatment will cause mouth sores depends on how much radiation you receive and whether you're also receiving chemotherapy at the same time.
You may begin to experience mouth pain two to three weeks after you begin radiation. More-intense doses of radiation will cause mouth sores to develop more quickly. Mouth sores from radiation may last four to six weeks after your last radiation treatment.

Bone marrow or stem cell transplant

Mouth sores associated with GVHD develop two to three weeks after a bone marrow or stem cell transplant.
People who receive transplants usually receive high-dose chemotherapy or radiation to prepare their bodies for the transplant. Since these therapies also cause mouth sores, it can be difficult to tell whether the sores are from the transplant preparation treatment or from GVHD.
Your doctor may test cells from your mouth to determine what's causing your mouth sores.

Monday, March 30, 2015

David KrollContributor
I cover drugs, education, and the science affecting our daily lives.full bio →
Opinions expressed by Forbes Contributors are their own.

What 60 Minutes Got Right And Wrong On Duke's Polio Virus Trial Against Glioblastoma

An engineered version of the poliovirus has been in development for more than 20 years as a treatment for one of the most difficult-to-treat cancers, a brain tumor called glioblastoma multiforme, abbreviated GBM. A human safety trial of the virus, called a Phase I study, is ongoing at Duke University’s Brain Tumor Center in Durham, North Carolina. The patients who’ve been enrolled have the toughest form of this disease: GBM that has returned after previous surgery and treatment.
Last night, the CBS News program 60 Minutes devoted two segments of the broadcast to correspondent Scott Pelley’s 10-month-long glimpse into this clinical trial. (Disclosure: I have held an unpaid adjunct faculty appointment in Duke University’s Department of Medicine since 2002, was a paid faculty member there in 2001, and did a year-long research sabbatical there in 2000 while I was a pharmacy professor at the University of Colorado.)
The segment, called “Killing Cancer,” was produced by Michael Radutzky and Denise Schrier Cetta and did a responsible job of illustrating the potential power of this new treatment with the sober realities of the challenges presented by a cancer whose prognosis is measured in months. The program, the entire transcript, and supplementary materials are available at the 60 Minutes website.
Using the virus that causes the childhood paralytic disease called poliomyelitis to treat cancer seems outrageous. We’ve been trying to eradicate the virus from the planet since the 1950s, when two types of vaccines were developed by Drs. Jonas Salk and Albert Sabin. The Americas were declared polio-free in 1994 and the disease only remains in three countries: Nigeria, Pakistan, and Afghanistan.
But the way that the polio virus infects cells and what it does afterwards are the precise actions that Matthias Gromeier, MD, thought could be harnessed to treat cancer. Gromeier has been at Duke for the last 15 years painstakingly shepherding his studies from lab to clinic. But the German-trained molecular biologist began this work in earnest 25 years ago when he came to the States to work with the renowned virologist, Eckard Wimmer, at the State University of New York at Stony Brook.
Some technical background
Detailed in this seminal 1996 paper in the Proceedings of the National Academy of Sciences, Gromeier and colleagues in Wimmer’s lab replaced a segment of the poliovirus’s RNA genome with a corresponding piece from a human rhinovirus, a type that causes the common cold (The virus is still known in the literature and on Duke’s webpage by the cumbersome name, PVS-RIPO.)
They found that this recombinant (or chimeric) virus could still infect cells that had the poliovirus receptor, but that the virus didn’t replicate. Many cancer cells, including glioblastoma, overproduce the poliovirus receptor (known as CD155 or Necl-5). So, by using the right amount of this designer virus, the researchers could selectively kill glioblastoma cells in culture without affecting normal neuronal cells. For this reason, this virus is called an oncolytic virotherapy, meaning that it causes lysis or bursting open of cancer cells.
But that’s not all. The way that cancer cells make proteins is different from that of normal cells. So even when the virus gets into some normal cells that have the receptor, it’s not as damaging. This two-part difference between cancer cells and normal cells is the basis for trying to treat human glioblastomas by directly infusing very small amounts into the tumor through a one millimeter diameter catheter that’s inserted into the tumor through the skull, guided by 3-D imaging. That part of the work is done by Duke neurosurgeon, John Sampson, MD.
But once in the brain, the normal protective triggers the body’s immune response against the tumor cells. In fact, the patient’s own immune response is probably more important than the initial bursting of the cancer cells.
As Gromeier explained on 60 Minutes, “So cancers, all human cancers, they develop a shield or shroud of protective measures that make them invisible to the immune system. And this is precisely what we try to reverse with our virus. So by infecting the tumor, we are actually removing this protective shield. And telling the– enabling the immune system to come in and attack.”
But the immune response must be carefully manipulated because too much virus can cause a massive swelling of the brain. So that’s why the goal of this first Duke trial isn’t to determine the virus’s effectiveness. The purpose is to get to the right dose, as explained by the Brain Tumor Center’s deputy director, Henry Friedman, MD.

A personal aside
While I was on sabbatical at Duke in 2000, Gromeier had joined the faculty in microbiology and immunology in the same building where my mentor, Ken Kreuzer was located. I remember when Gromeier’s first independent grant was funded through the National Cancer Institute’s RAID program, a funding mechanism that allowed unique cancer treatments discovered in academia to be cultivated for clinical trials using the preclinical toxicology, medicinal chemistry, and biologics expertise of the NCI Developmental Therapeutics Program to produce clinical trial-quality study agent.
When I ran into Gromeier a few years into the process, he said that the level of detail required to get the product even made was tortuous. When they were using cholesterol in the mix to originally help the virus into the cells, he said that NCI and FDA were concerned about the source of the cholesterol being cattle and that they had to be sure that the preparation didn’t have any miniscule amount of the virus that causes mad cow disease. Every step of the process had to overcome this degree of scrutiny. And even when the clinically-qualified batches of virus were made, the FDA required seven more years of safety testing, up to and including administration to three dozen monkeys, before the first human subject was permitted in 2011.
My near-teenage daughter just walked past the computer as I’m writing this and I was struck by the fact that Gromeier has been working on this at Duke a couple of years longer than she has been alive. The rigor with which the safety of this approach is being evaluated is remarkable.
I encourage you to watch both parts of the 60 Minutesstory. Knowing some of the folks involved but also putting on my critical hat as a scientist and writer, I have a few thoughts on how the story was presented.
What I liked:
1. The program was careful to note that the effectiveness of the virus in three of the study volunteers interviewed was offset by an equal number of patients who are no longer alive. Eleven of the 22 volunteers have succumbed to their disease.
2. The program gave time for Henry Friedman to say that a clinical effect of the study agent is not the goal of a Phase I study.
3. Annick Desjardins, MD, the neurooncologist who followed the patients and evaluated their post-surgical functioning, showed the true level of compassion and teamwork that forms the nucleus of the Brain Tumor Center’s reputation.
4. Even when Scott Pelley pushed Friedman and center director, Darell Bigner, MD, PhD, to use the word “cure” or “miracle,” both were very measured and guarded but still conveyed a sense of optimism. In Friedman’s 34 years at Duke and Bigner’s 49 years, they’ve seen a lot of death. But they’ve also made significant contributions in So for them to both say that the recombinant poliovirus approach was the most promising agent they’ve seen for glioblastoma in their careers, it’s hard not to be excited.
5. Both the program and Duke made it very easy for prospective patients to have their questions answered about potential eligibility for the trials: Editor’s Note: For more information on the Duke University polio trial or other brain cancer trials, click here or call 919-684-5301. The Duke page is very easy for interested subjects to navigate for referrals and information on this and other clinical trials at the Brain Tumor Center. The site was clobbered last night and was unreachable for the first two hours after the program aired, but it has been available every time I’ve clicked this morning.
What I liked less:
1. At the outset, Pelley made it sound like very few advances have been made in cancer treatment over the last 100 years: “The long war on cancer has left us well short of victory. Radiation flashed on in the 19th century, chemotherapy began to drip in the 20th but, for so many, 100 years of research adds up to just a few more months of life.” That’s partly true, but partly nonsense. Tremendous strides have been made within many cancers, from childhood leukemia cures to cancer survivors who are counting decades since their treatment. The program needn’t have denigrated how far we’ve come to show the promise of the viral therapy. It’s impressive enough on its own.
2. Pelley: “Duke went to the FDA for approval of this new Frankenstein virus.” Frankenstein? No, no, no, no. Moreover, the virus wasn’t approved. It was granted Investigational New Drug status to begin clinical trials.
3. The emotional power of the two people who are in remission, particularly the first recipient, Stephanie Lipscomb, was so positively overwhelming that I don’t think the risks were fully balanced by the story of another patient who did not do well and withdrew from the study. The positive anecdotes were very compelling and a viewer hoping to get into subsequent trials might be overly optimistic. While I mentioned above that I liked the fact the the 11 of 22 response statistics were a valuable inclusion, the amount of time given to that point led to its underrepresentation.
4. For Forbes readers, there was a paucity of information on the intellectual property considerations of the polio virus therapy and detail on how the drug will ultimately be commercialized. The program mentioned briefly that the investigators have a financial stake in the drug’s success, as with many clinical trials. But there was no discussion of the fact that the first patents on the therapy were granted to Gromier with Wimmer and the Research Foundation of SUNY-Stony Brook. Issued in 2003 and 2006, we don’t know if any hurdles exist for Duke’s commercialization of the technology (I have no inside information on this; I’m just raising it as a viewer who expected the issue to be addressed.).
5. While interviewing Gromeier, Pelley led him to speak about the use of the virus against other cancers. I don’t think the program made clear that the work in prostate, breast, and pancreatic cancer, among others, was still in the experimental phase.
6. The program only briefly touched on other therapies that exploit the immune system for cancer but didn’t mention that viral approaches are being taken by quite a few other research teams and companies. Forbescontributor, Arlene Weintraub, has a more comprehensive discussion this morning.
7. Without knowing Henry Friedman, one might think that CBS was being disrespectful to him because he chooses not to dress as a typical physician: He was wearing a Duke hoodie and jeans and Pelley said that’s how Friedman’s brain thinks about fashion. Indeed, his dress is most often casual but I know that it breaks down barriers with his patients, most who are coming from far away and freaked out about their disease. Friedman is a fierce advocate of every facet of Duke and has contributed immensely to the brain cancer treatment internationally. Moreover, I admire him most for his establishment of a program (with neurosurgery colleague, Allan Friedman, MD – not related) for Duke’s women athletes who wish to pursue medical school and his strong support of Duke women’s basketball. Perhaps that’s just me.
Why the absence of the Tisch name?
And my final observation was one that just struck me as odd. The Duke Brain Tumor Center, originally established in 1937, was renamed the Preston Robert Tisch Brain Tumor Center after the Tisch family donated $10 million for research at the Brain Tumor Center and the Duke Comprehensive Cancer Center. Yet the 60 Minutes program made no mention of this name.
The late Bob Tisch was treated at Duke for his brain cancer, living for 14 more months after he was given a two-month prognosis in New York. Bob Tisch was the brother of the late Larry Tisch, CEO of the CBS network from 1986 to 1995. During his tenure, Larry Tisch slashed jobs in the news division and one can’t help but think that the remaining old-timers at 60 Minutes might hold some grudge. Alternatively, they might not have wanted to cloud the story with this two-steps-removed association with the Duke Brain Tumor Center.
In any case and for whatever reason, the omission was glaring. CBS has not responded to a request for information.
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