Donna G

Hi Curtis, that post was neat. In a special way Katie can visit her Mom there. Best Wishes for the new year. Donna G

Yes, I new I could count on you guys! The article in the Pioneer Press ( St. Paul newspaper ) was longer than the one carried in Detroit, but the site Theresa added brings in the rest of the info. I just really feel that the emotions and stress of this disease is really hard and am so glad to see that the Cancer Clinics are evaluating how much this stess affects the outcome. This site is a great source of support for lung cancer patients especially where we need it so much and there are so few person to person groups. Donna G

Boy I wish I could find the article on the web. "new focus on the distress experienced by cancer patients" by Amy Dockser Marcus , Wall Street Journal. It discusses especially with lung, pancreatic and ovarian cancer how certain cancer centers have developed a tool to evaluate the stress these diagnosis cause and when to treat. RED FLAGGS Excessive worries, Fear, Sadness, Confused thinking, Despair or loss of hope, Severe family problems(Marriage crisis, child having problems in school) Spiritual crisis, severe financial problems. COPING STRATEGIES Explore spiritual beliefs, practice meditation, keep a journal, join a support group, take medication, talk to a counselor, create a support team of family members and friends. Hope I find it all printed as in todays paper somewhere on the net, anyone else see it? Donna G I FOUND IT Posted on Sat, Jan. 15, 2005 New focus on the 'distress' experienced by cancer patients BY AMY DOCKSER MARCUS Wall Street Journal Leading cancer organizations are focusing new attention on a problem that is often overlooked when treating cancer: the anxiety and depression that can affect patients and interfere with treatment. A group of 19 major cancer centers, along with the American Cancer Society, have developed a set of guidelines for evaluating a patient's level of distress. The guidelines involve a simple screening test in which patients go through a checklist of possible causes, from insurance issues to family problems, and rank themselves on a 10-point scale. Above a certain level, they are encouraged to seek help. While virtually all cancer patients experience some level of distress, the anxiety, depression and fear can reach a point where it affects a person's daily life and his or her ability to get needed treatment. Patients may find it difficult to get out of bed, much less attend appointments and chemotherapy sessions. Some distraught patients avoid acknowledging their disease and cancel appointments. Distress can also cause sleeplessness and confusion that may result in failure to take medication properly, potentially lowering patients' chances of a cure. Distress is an umbrella term doctors use to describe a range of responses, from fear to depression to spiritual crisis. Because many of the symptoms of distress — lack of appetite, nausea, weakness — mimic symptoms of cancer treatment, oncologists say it is important to understand the cause of the symptoms in order to know whether a change of regimen is called for, or if the patient really needs a mental-health professional or social worker. But at busy oncology offices, many doctors don't have the time to figure out if a patient is sleeping, eating or going about regular activities. And patients are often too embarrassed to ask for help or don't know how to recognize the signs. So these guidelines focus on helping the patients themselves identify when there is a problem that may keep them from following their treatment. COPING WITH CHRONIC STRESS The push by cancer groups to address distress comes at a time when new therapies are enabling more patients to live longer with the disease. As cancer is increasingly considered a chronic disease — with need for ongoing, sometimes lifetime monitoring and treatment — there is growing recognition that more patients will be coping with chronic stress. And because many of the newer treatments involve oral medications taken at home, rather than intravenous therapies in a medical setting, there is increasing concern that distress could cause patients to slip from their regimens without supervision. "Screening for distress" should be a standard part of any visit to the oncologist's office, akin to the way questions are already routinely asked about physical symptoms, says Michael Levy, director of supportive care at the Fox Chase Cancer Center in Philadelphia and a member of the panel that developed the guidelines. The guidelines aim to set out a simple, rapid screening test that enables patients to understand whether they are experiencing distress that might affect their ability to cope with cancer. Using a 0-10 scale, patients are asked to mark on a "distress thermometer" how much distress they experienced in the previous week, including the day they take the test. Patients are then given a list of potential causes and asked to check off the areas that are bothering them. It could be practical problems, such as difficulties arranging child care. Other possible issues include family strains; spiritual crises, such as a loss of faith; physical problems, such as fatigue; or emotional stress. A 5 or above on the distress scale is considered significant enough to merit some kind of treatment, such as meeting with a psychiatrist. Even patients who score lower on the distress scale are advised to seek out information about coping, says Jimmie Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York and chairwoman of the panel that developed the guidelines. ASKING FOR HELP The issue of patients experiencing problems that lead to noncompliance with treatment isn't confined to cancer patients. According to World Health Organization statistics, only around 50 percent of people follow their doctors' orders when it comes to taking prescription drugs, for reasons including forgetfulness and a fear of side effects. But distress is particularly acute among cancer patients. A study by researchers affiliated with Johns Hopkins University estimated that more than one-third of cancer patients experience significant levels of distress that require some kind of help — but only 5 percent of those ever get it. With some forms of the disease that have lower survival rates, such as lung, brain and pancreas cancer, the number of distressed patients is even higher, with almost half of patients reportedly experiencing anxiety levels that need treatment. Shirley Howe of New York City, age 60, says when she was diagnosed with ovarian and uterine cancer, she stayed in bed for a week. She says she felt so weak and fragile she couldn't even sign checks to pay her bills, and her fears about the disease made it difficult to understand the information her doctor gave her. Her oncologist never knew, she says. She finally realized she needed help and asked him for the name of a mental-health counselor. The new screening guidelines aim to help patients like Howe recognize distress symptoms, but similar evaluation guides have been studied inside centers like Memorial Sloan-Kettering as a way to help health professionals monitor patient levels of distress. The 19 cancer centers involved in developing the guidelines are part of a group called the National Comprehensive Cancer Network that has developed many guidelines for cancer care. Some cancer survivors who have been shown the guidelines by researchers say anxiety was a huge part of their cancer-treatment experience, but often no one asked them about it. Yvette Muyette, 57, was diagnosed with larynx cancer in 2000. Even when doctors told her her prognosis was good, she said, "All I could hear was 'you're going to die, you're going to die.' " She said she broke doctors' appointments because she was frightened by seeing other patients who had difficulty speaking because their voice boxes were removed during treatment. Counseling and anti-anxiety medication eventually helped her to follow her treatment regimen, she says, but she had to seek it out on her own. David Kissane, chairman of the department of psychiatry and behavioral sciences at Memorial Sloan-Kettering, says a focus this year will be on studying whether group therapy can improve adherence to treatment and prevent depression in cancer patients.

Welcome. So your Mom is 5 months into the journey. She has been through a lot. Sometimes it is good to block out some to cope with what you must. It is good that she has loved ones to pick up the slack for her. We all need help in these situations. Now keep us posted on how her scans come out. Donna G

I notice you just returned to work less than 2 weeks ago. Could you be tired too? It is an ajustment to get back into the swing of things and then add on the "normal" pre CT concern . Be sure you are getting adequate rest. Donna G

Looks like a "new ' season with new quiters starts in Feb. http://www.paxtv.com/shows/coldturk/ I never heard of it til your post! Donna G

Welcome Pamm. Perhaps if you write this problem under "Ask the Experts" they can come up with something. Donna G

Hi and welcome. It takes a while to see results. I had a 3+ Cm tumor in the apex of my right lung. I had chemo and radiation together, it killed it off. Then I was able to have surgery. Wishing you well and keep us posted on your Dad. Donna G

Hello, and welcome to this site. I was Stage III and had to have chemo and radiation , check for response and then surgery. Sounds like you are Stage IV I would think chemo / and or radiation would be the first treatment. Sometimes , some doctors , depending on the circumstance and your response to treatment will do surgery , sometimes that is not possible because of the site of the tumor. If it helps, when they did do my surgery , they said the only thing left was scar tissue. Praying that could be true for you. Now keep us posted on how you are doing. Donna G

I really like the NED part. Donna G

YES! great news. I am sitting on the edge of my seat just waiting to hear the details. Donna G

Just want to ad that Morphine actually makes it easier to breath. It also helps you relax so that you don't waste energy and need more Oxygen. I hope that helps. Donna G

Hi Maryanne. Don't worry about him needing pain meds. That is normal. A Thorocotomy incision is painful. It is good he is going to get chemo. Welcome Donna G

I forwarded this on to Jodi. She was diagnosed with this in her twenties also, one lung. She hasn't been at group, or on this site for a while. Donna G

Stress is doable, great news. Donna G

MOre good news! I love it. Thanks for the update. Donna G

Hi Leandra. Praying for you and your family. Sounds like you got some great sites by those above for you to look at. You say it was 2 months ago that your Dad was told he had tumors in his brain. Did he have a treatment for it ? How did he respond? Donna G

Thanks for posting. Sounds like good news to me. Weatherman says you are getting snow today. Take it easy if you must go out! Looking forward to more good news with the next test. Donna G

Glad to hear your good news. I started with an epidural but it fell out! So they gave me a PCA , that only took the edge off. So I know what you are saying . It will get better. Donna G

Please update us on what the radiation onc says this month. Meanwhile I pray that any lymph node or what ever is ZAPPED by the chemo! Donna G

I had those 2 chemos. It is the Etoposide that causes it. At about 2 weeks it started falling out in huge clumps. My husband wanted to shave it so it would quit falling on my dinner plate. I did not let him. It never all fell out but it was very very thin! Donna G

Thank you, THank you. What great news Mary Ann! Will be watching for your update! Donna G

Hi Mike. Welcome. Glad to hear your faith has helped you deal with this disease your Dad has. Remember your prayers will help your Dad . Double blind studies have been done that people who are prayed for do better, even if they do not even know they have been prayed for. Now keep us posted on how things are going. Donna G

Yes , Amen. Happy New Year To All. Donna G

My friend sent me a prayer card to St Peregrine 7 yrs ago , when she found out that I had lung cancer. I know he prayed for me. I now give it out to my friends that are afflicted. Donna G