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Sunday, July 15, 2007

Few Words Today


Brave to the End:

Melanoma, Life and other Crazy Stuff (Shannon aka Butterflymom)

Que Sarah, Sarah

Two Lucky (Rusty and Yen archive from melanoma category)

Charlie Wemkea Blue

Living with Melanoma (Heather)

Kim from Iowa

Randy Evans

Monika From Germany

BarbaraGA

Melanoma has claimed the lives of so many brave people. The ones on my memorial today are only a few who have shared their journey either with blogs, posts on the MPIP, and or through many other ways.


Thursday, July 12, 2007

Being a curmudgeon may be good for your health

While checking my links to compile my big bear page with even more links than I compiled for my everything I wish I didn't know list of links, I discovered that one of my links didn't work anymore. Since I saved the article off line, I'm going to post it here. I love this article because it addresses the fact that people who use coping devises which they have found to work for them in the past, tend to do better when facing a cancer diagnosis. The point being that, for example, a curmudgeon should continue being a curmudgeon if that works for them. Trying to turn a curmudgeon into Polyanna because of some ideal about a positive attitude being the best way to fight cancer doesn't work. As a matter of fact studies have not shown that people with a positive attitude live longer although quality of life issues can come into play. I know for me research has always been my way of dealing with things that worry me, whether as a young mother, or as a mother whose child was selecting colleges, or in terms of work, and most recently in terms of melanoma. It's not that my research affected where my child went to college (she had her own ideas) or that it has much affect on the treatment I've received as a melanoma patient but it's my coping mechanism.

Below is the article from the Wellness Community which I can't direct link anymore.

The Challenge of the 'Positive Attitude'

People with cancer have long been told that having a positive attitude increases their chances of survival. How true is this? Is it important to have a “positive attitude” in order to battle cancer and improve outcomes? Not necessarily. And conversely, will a “negative attitude” mean a worse outcome or earlier death?

In a 2004 study by Penelope Schofield and her colleagues at Peter MacCallum Cancer Centre in Melbourne, Australia that involved 204 lung cancer patients, there was no evidence that a high level of optimism prior to treatment enhanced survival. However, the study underscored the importance of optimism in relation to quality of life. Those patients who were more optimistic were less depressed and more likely to adhere to treatment.

Another new body of work goes beyond just looking at a positive attitude and is examining its biological underpinnings by studying immune function and stress hormones. So far, the findings are similar to the Schofield study, indicating that successful coping is not necessarily about having a positive outlook or striving for a cheery disposition. Rather, coping in a way familiar to you (which could involve anything from stress relief to exercise) can prove beneficial. In fact, if someone is a natural curmudgeon, then continuing to be a curmudgeon may be the very thing to help lower stress, bolster the immune system and, possibly, influence the success of the cancer treatment.1

This new research does not just focus on patients’ tendencies to look at the glass as half-full or half-empty and how those attitudes may influence survival outcomes. Instead, researchers are examining how different coping styles may affect biological indicators of disease-fighting ability such as cortisol rhythms (a measure of stress levels) and natural killer cell counts (a measure of immune response). With better understanding of these biological variables, there may be ways (such as muscle relaxation, stress reduction exercises, or problem solving) to help patients maintain stress and natural killer cells at levels that improve their chances of extending survival.

For instance, researchers are measuring cortisol levels in womens’ saliva and counting white blood cells to determine if there is a connection between cortisol levels (a measure of stress) and the immune system. In an ongoing study, preliminarily published in 2000 in the Journal of the National Cancer Institute, researchers found that patients whose cortisol levels were flat and didn’t follow the typical pattern of decline throughout the day, died sooner than women with normal, fluctuating cortisol patterns. The finding, researchers believe, indicates that a psychological intervention may boost one’s disease-fighting ability, a notion that in the past has driven the focus on “staying positive.”

Researchers are now realizing that people cope with stress in vastly different ways. Individuals need to identify solutions that match their natural temperament and personality. The next step is finding the mechanisms that enable patients to keep their cortisol patterns and natural killer cells at optimum levels and hopefully extend their survival. For some patients, this may happen by being uncooperative and unpleasant rather than positive if this is their normal coping strategy towards stress.

For example, at Ohio State University, an ongoing study is measuring not only survival rates but also endocrine responses and biological markers of immunity. Women participating in the study, all of whom share similar diagnoses for breast cancer, are learning muscle relaxation, problem solving, and time management techniques. They are making dietary changes, such as reducing fat intake, increasing fiber and exercising, all in the hope that some methods will bolster the women’s ability to fight and ultimately beat the disease.2

In essence, people with cancer should be encouraged to develop realistic expectations about their illness so they can make good decisions about their care and not be pressured to be blindly positive. The important distinction is that optimism should not exclude sadness, anger, sorrow, grief and hurt. You can decide to go on in the face of all that, knowing the outcome is not under your control.

Is There a Difference Between Optimism (Positive Attitude) and Hope?

Jerome Groopman, M.D., author of The Anatomy of Hope, elaborates on the above idea by explaining that a positive attitude or optimism is the thought that “Everything is going to turn out for the best.” But life isn’t like that. Sometimes bad things happen to wonderful people. Hope, in contrast, does not make that assumption, but rather, in a clear-eyed manner, assesses all the problems, challenges, or obstacles, and through information and education seeks and finds a possible realistic path to a better future. This future is often unknown and unknowable but is constantly re-assessed based upon new information. A person with true hope will experience a wide range of emotions including fear, anger and sadness and through it all will try to move forward through all the difficulties.3

At The Wellness Community, we understand hope to be something participants gain from each other. After all, there is no person a cancer patient would rather see than a cancer survivor. The ability to make pragmatic decisions in the face of cancer based upon being with others who know what you are going through is an essential ingredient at TWC. Participants learn from each other and can increase hope as well as reduce some of the stress associated with cancer.4 If longer survival is not possible, then it is reasonable to hope for other meaningful outcomes—like hoping for a peaceful death or the resolution of family conflicts. Gaining information and support from others with cancer may lead to positive immunological and stress hormone responses.

________________________________________

1. Wall Steet Journal. Amy Dockser Marcus. April 6, 2004

2. Wall Street Journal. Amy Dockser Marcus. April 6, 2004.

3. Groopman, Anatomy of Hope.

4. Benjamin, The Wellness Community Guide to Fighting for Recovery From Cancer.

Wednesday, July 11, 2007

Birds and such

It's funny how much we can change. I used to be frightened of birds although I have always envied them because they can fly and I can't. Now one of my greatest pleasures is watching the birds and perhaps even more listening to their constant chatter in my secret garden.I'm not sure why birds used to scare me. Perhaps it was seeing the movie with the same name at a tender age. When we first bought the house I still live in 23 years later, I discovered there was a time of year when the birds didn't like me on my deck. That was the old deck with the now removed holly bushes which gave way to a bigger deck which is now in need of an overhaul its self. During the fall early in the morning the birds would come frighteningly close as if to scare me off my deck. That hasn't happened in years but at the time it scared me.The big turning point for me with the birds was when one got stuck in the old cage that enclosed leaves breaking down for mulch. I had to free the bird. It scared me to do it but I wasn't cruel enough to leave it. After that I had a different feeling about the birds. For a while I spent more on bird food than people food. A friend who I let stay in my house for a while started the massive feeding and built the bird houses. Through the years I've shifted over to providing a habitat which gives them plenty of food without all the feeders which attract the cats to stalk at certain areas. The only time I put out food is when everything is iced over or snowed over. I still have as many birds that hang out here but they can hide better and aren't in central locations when they eat.
When I went through my initial empty nest phase when my daughter went to college in 2003, I started a long and still unfinished project. That project was going over my old journals and pulling out what I wanted to keep and shredding the rest. I found that the only parts I wanted to keep for the most part were my wildlife and garden notes. All the anxt and irritation was gone with a poof of the shredder.

Tuesday, July 10, 2007

Everything I wish I didn't know about melanoma

I am not sure if I will post this blog entry or merely keep it for a way to get the HTML codes which make it possible to copy more than one click-able link into a response on the MPIP. Perhaps I'll post it so I can link the whole thing to my MPIP posts. Not sure since I'm betting it will take me a long time to get the whole thing together.

If I do link this as a solo page on my MPIP posts and anyone wants to go back to the main page of my folksy, photo intensive blog, Carver's Sight or is that Site, is the way there. When I first started my blog I thought that I would link it to my MPIP posts but since it's more of a diary than a melanoma page, I usually don't do that unless I'm linking a particular post which deals with a subject being discussed.

Below is my everything I wish I didn't know about melanoma list of links but first a pretty rose to take the edge off the thorns.


So I ended up doing a more comprehensive list of my links. The one below is more manageable but if you want to go to the big bear click on: My big bear group of links. Another update, Janner has finished a web site which has both of our links and more so if you want to check it out, go to Melanoma Resources.

If you want to start with a smaller group, then they are below. NOTE - I have not updated this and some links may not work. I recommend the melanoma resources link above because Jan keeps that up to date.

GENERAL HODGEPODGE OF LINKS I USE

Frank G's guide for Newly Diagnosed Melanoma patients Some time ago Frank put together a good group of internet links for melanoma patients and some of my links are already on Frank's page.

Melanoma Care Centers in the U.S. (organized by region)

Nursing Exemplars in Melanoma Care

Institute of Medicine Cancer Survivorship

NCI Treatment Statement for Melanoma Patients


NCI Search for Clinical Trials (note- this takes you to the advanced search where you get to specify region of the U.S. or another country, hospital, etc. but you don't have to fill on that in. If you want to see all the trials simply specify melanoma as the type of cancer, leave the stage as all and type of treatment as all and it will show all melanoma trials).

Clinical Trials (another search engine)


AJCC 2002 Revised Melanoma Staging (warning - you ain't no statistic so if you already know you are high risk go here if you like but try not to assume it's saying anything about you as an individual. If you are in a low stage see link below which is even better news for you than this one.)

ASCO population based validation of the AJCC melanoma staging

National Comprehensive Cancer Network (This site has practice guidelines for oncologists to use. You can view the clinical practice guidelines for melanoma and/or you can go to the patient part and see what they recommend by stage. The practice guidelines are much longer and denser but good information. The patient guidelines are more abbreviated).

Cancer Consultants Oncology Resource Center
(This site breaks down melanoma by stage and has a good discussion of treatments which are FDA approved as well as ones that are still in the clinical trial phase).

FDA Oncology Tools

Survivorship

Melanoma: Biology, Diagnosis and Management

Melanoma-Histopathological Variants

Pathology Outlines

An Evidenced Based Staging System for Cutaneous Melanoma (this has loads of charts and statistics and frankly has scared the beejesus out of me but I still refer back to it a lot)

Lymphatic System Medical Illustrations

PET/CT in Oncology

ACS: How is Melanoma Staged


How Cancer Grows

The Psychological Challenges Facing a Melanoma Patient

SPECIAL TOPICS

Thick Primary:

Prognostic Implications of thick primary in the era of Intraoperative Lymphatic mapping and Sentinel Lymphadenectomy

The Prognosis of Patients with Thick Primay Melanoma: Is regional Lymph Node Status relevant

Good Handbooks for home care:

Roswell Park Handbook for Melanoma Patients (Once you follow this link you can click on the part where you choose your surgery and several of the lymph node dissections are covered giving you a good idea of what to expect. This is not the cancer center I go to but their online handbooks are great for lymphedema prevention etc.)

Care of the JP drain (everything I wish I'd known when I went home with that dumb companion)

Adjuvant Treatment for Melanoma:

Helping Melanoma Patients Decide whether to choose Interferon High Dose

Response to Helping Melanoma Patients Decided whether to choose . . .

Pros and Cons of Adjuvant Interferon

Low Dose Interferon

Choices in Adjuvant Therapy of Melanoma

GM-CSF

Bio Chemotherapy (adjuvant version- note also tested for active treatment)

Adjuvant Radiation after LND (this one is on axilary but also used some with neck and other sites)

Treating Aggressive Limb Melanoma (recurrences, intransit, etc.)

Hyperthermic Isolated Limb perfusion

Isolated Limb Perfusion


Stage IV Melanoma:

Rather than list a bunch of links for stage IV melanoma (spread to distant sites) I think one of the better overviews is on Cancer Consultants stage IV page. Any newly diagnosed stage IV people can also use the clinical trial search engines I started off with to find new trials for stage IV melanoma as well as the links to melanoma care centers.

The deal with stage IV is that so much depends on where the cancer has spread to since this stage includes spread to any site past the first major draining lymph node basin and can include other skin sites, distant lymph nodes, and pretty much any organ, bone, etc. The cancer consultant page linked above covers both FDA approved treatments as well as the newer treatments currently in trials. One thing to keep in mind is there are melanoma survivors at all of the stages. I am currently stage III and one thing I've learned is that people do beat the odds. I have gotten to know a woman who is 6 years out from having lung and brain involvement and she is NED (no evidence of disease). There is always room for hope.

Miscellaneous:

Paraneoplastic Syndrome

American Pain Foundation

Livestrong

American Academy of Dermatology

Melanoma Research Foundation

Cancer Survivor Network