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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

1 comment:

Kim said...

Whoa there, girl. That's a lot of info for one 'little known' disease. Thanks for gathering it...I am not gonna read it right now, though. You know why.

The world wags on with three things: doing, undoing, and pretending.
-some kind of Proverb

I am still pretending. Now watch me find a lump or something.
Love you Buddy.