CancerGuide: Kidney Cancer Resources

WEBSITES • ONLINE SUPPORT • ORGANIZATIONS • BOOKS

Useful Kidney Cancer Web Sites

Good Starting Points

A Friendly Easy to Read Introduction from Robin Martinez, who co-manages the KIDNEY-ONC E-Mail List with me.
The Urology Channel's Kidney Cancer Page

A decent high level overview from The Urology Channel
US National Cancer Institute's CancerNet Renal Cell Cancer Page

A Jumpstation for NCI's renal cell cancer information. Includes patient and professional state of the art statements (good place to get overview information), clinical trial search and more.

More Detailed or More Specialized Information

BiologicTherapy.org

This page sponsored by the Cleveland Clinic contains the most cogent and detailed review of immunotherapy I've found anywhere on the web. This includes IL-2 and Interferon-Alpha . While it's intended for professionals it's actually less technical than it could be - they take the trouble to explain some of the terminology. I think much of it can be understood by a determined patient. The Renal Cell Cancer section is by Dr. Ronald Bukowski who is one of the best known experts in our cancer. He is relatively conservative tending to favor interferon over interleukin-2. Whether or not you agree with the conservative perspective, the information here is just superb. [Reviewed January 2003]
KidneyCancerTrials.org: The Renal Cell Cancer Evaluated Trials Database

Another one of my projects, this new (as of August 2002) site is a database of selected clinical trials for renal cell cancer. Although there are few trials compared to other trial databases, what makes this different is that this database gathers as much information on each trial as possible and even offers an opinion on its merits. [Reviewed January 2003]
Proleukin.com

Chiron is the pharmaceutical company which make Interleukin-2 and Proleukin is Chiron's brand name for Interleukin-2 and this is their official web site. It contains both patient oriented information and professional information, including the official prescribing information (which can be very useful). Because they are the drug maker, their information is limited by law to FDA approved uses of the drug as described in the prescribing information. For IL-2, that means standard high dose IL-2. They can't mention other ways IL-2 is given. [Reviewed January 2003]
Kidney Cancer Journal

The Kidney Cancer Journal is a quarterly medical journal for professionals that is just starting out, and which is available free on-line. It contains news articles and technical reviews by some of the best known names in kidney cancer. The editorial board is truly an all-star cast. While meant for the professional, the determined layman will be able to gain a tremendous amount here. The technical reviews aren't easy reading for a layman, but as journal articles go, they're are relatively understandable (as is the case with most reviews), and the news items are easier. It doesn't look like they publish original research, but the reviews have plenty of references to the original research presented if you need it. Over time, I expect this to be a terrific resource for patients and doctors alike! [Reviewed February 2004]
Genitourinary Oncology Program at the Methodist Hospital in Houston Texas

The Genitourinary Oncology Program offers a variety of clinical trials for patients with kidney, prostate, bladder and testicular cancers. Contact this institution for treatment options, as they are actively enrolling patients in their studies. [Reviewed January 2006 by PF]

Websites of Professional Organizations

Several scientific/professional societies include doctors who treat kidney cancer and they all hold meetings in which medical research is presented. While the web sites of these societies are no place to find basic information on kidney cancer, they can be searched for the latest treatment developments - in the form of research abstracts. Of course, it's all technical, but don't let that stop you!

The American Urological Association is by no means specifically devoted to kidney cancer - but rather is the major professional organization for urologists - kidney cancer is one of the conditions they treat, especially surgery to remove the kidney tumor. Their site contains abstracts from their annual meetings so it is a source for new developments, though I find it rather hard to search. There is an emphasis on developments in surgical techniques, but systemic therapy is also covered. Finding the abstracts on the AUA website is next to impossible, so here's a direct pointer to the AUA Abstract Viewer [Reviewed February 2003]

The American Society of Clinical Oncology (ASCO) is the major professional organization for oncologists and their annual meeting is a key source of information on new developments in cancer therapy for all types of cancer, including kidney cancer. You want to find their abstracts which cover their annual meetings since 1997. Unfortunately, their new and "deproved" site design makes it much more difficult to browse abstract and presentations from other than the current year than it used to be, and the instability of their design precludes me from linking directly to the abstract page, so you'll have to find them yourself, probably somewhere under "meetings." [Reviewed February 2003]

Kidney Cancer Online Support : E-Mail Lists and Chats

Sometimes nothing is more valuable than the support or experience of people who've been there. You may also have the privilege of using your experience to help others. Because kidney cancer is relatively uncommon you are likely to have trouble finding a group of kidney cancer patients to meet face to face, but thanks to the power of CyberSpace you can be in touch with hundreds of kidney cancer patients all over the world in mere minutes.

There are several ways of getting together with kidney cancer patients online:

Chats: In an OnLine Chat room everything you type is seen by whoever is "in" the chat room at the same time. Chat is very "real-time". One limitation of chat is that you can only chat with those who are there at the time which may be a very limited number and may not be predictable. With a rare situation like kidney cancer pre-arranged times are usually necessary to gather enough people to make it work.
E-Mail Lists: All members of an e-mail list get any e-mail sent to the list, but they don't see them until they read their e-mail, so communication isn't "real time" the way chat is, but everyone who is a member of the list will see your message eventually, and also you can read the list whenever you want. I greatly prefer lists to chat because e-mail leads to more detailed, more carefully considered communication. Another advantage over both chats and face-to-face support groups, is that although response isn't instantaneous, a list is available 24 hours a day 7 days a week.

KIDNEY-ONC Mailing List

Join us on the kidney cancer mailing list! Subscribe to the KIDNEY-ONC mailing list and you will instantly be part of an electronic discussion group with over 900 kidney cancer patients. You'll find a wealth of both information and support. We'll do the best we can to help you, and hope you will be able to help us too!

KIDNEY-ONC is hosted by the Association of Cancer On-Line Resources (ACOR) - oh and by the way I'm one of the listowners.

For more information on KIDNEY-ONC, including how to sign-up please see the Kidney-Onc FAQ Page.

kidneycancerchat.org

kidneycancerchat.org is a service of the Kidney Cancer Association. Currently, a weekly chat is held there every Tuesday night, 8:00 New York Time. The association also sponsors occasional chats with kidney cancer experts. See the Association Web Site for details. The chat room is always open but unless there is an arranged chat it's usually empty. You could use it as a rendezvous spot to chat with a particular person. [Reviewed September 2003]

AOL Kidney Cancer Support Chat

Kidney Cancer Support Chat is available only to America OnLine members. It meets on Thursday nights from 8 to 9 Eastern time in AOL's Cancer Support Chat room at, aol://2719:3-6275- Cancer%20Support%20Chat (this link will only work for AOL members!).

Save that link in "My Favorites", or find the chatroom at Keyword: HEALTHCHAT by looking at the chat schedule under Cancer Support.

Another easy way to find the chat is to add HOST HLTH Robin to your Buddy List. Look for Robin at 8 PM Eastern time on Thursday nights. Click Buddy Info to find her location and join her in the chat room.

AOL sponsors Kidney Cancer Support Chat as one of many health and cancer chats. The Cancer Support Chat room is a permanent chatroom, always open. There are scheduled topics for some hours (when a volunteer HOST is present). The rest of the time it's open for general cancer chat. [Reviewed September 2003].

Kidney Cancer Organizations

Kidney Cancer Association

I strongly urge all kidney cancer patients to get ahold of The Kidney Cancer Association. I only wish I had known about this group when I was sick. The KCA web page is worth a visit but to get the most benefit you need to call them. In addition to some excellent literature they can also give you the names of the best experts in kidney cancer in your area. They can also be helpful if you are having problems with your health insurance.

Kidney Cancer Association
1234 Sherman Avenue, Suite 203
Evanston, IL 60202-1375
(800) 850-9132 Voice
(847) 332-1051 Voice

Kidney Cancer UK

This organization, founded by several British kidney cancer patients is substantial and active. They offer a newsletter, regular face to face meetings, informational brochures and various forms online support. There is presently little kidney cancer information available at the web site.

Australian Kidney Cancer On-line Support (AKCOS)

I think this is a small group - their web site isn't very substantial - but they do host a weekly chat which is open to kidney cancer patients world-wide

Kidney Cancer Books

There aren't many books specific to kidney cancer and some of these books are out of print and/or very expensive. If you are interested in any of them it pays to shop around online and to consider used if available. I was able to buy both of the very expensive technical books I describe below at substantial discounts (though they still weren't cheap). Bookfinder.com is a good place to start looking.

The Transformed Cell: Unlocking the Mysteries of Cancer

The Transformed Cell: Unlocking the Mysteries of Cancer
Stephen A Rosenberg M.D., Ph.D. and John M. Barry
1992 G.P. Putnam's Sons, New York
IBSN 0-399-13749-1

The Transformed Cell tells the story of the development of immunotherapy for kidney cancer and melanoma by Steve Rosenberg's group at the National Cancer Institute. It gives terrific insight into the way cancer research is done, as well as into some specific treatments such as Interleukin-2, Lymphokine Activated Killer (LAK) cells, Tumor Infiltrating Lymphocytes (TIL), and Genetically modified TIL. This is both a scary and inspiring book. The numerous failures are scary, but the successes are very inspiring, and I think offer some real hope to kidney cancer patients. This book is also an easy read - I was so excited when I got it that I blasted through the entire book in a single 4 hour sitting! Since it has been a long time since The Transformed Cell was published, you should not rely on it as a guide to current treatment. The Transformed Cell is no longer in print but is readily available in libraries and from used book sellers.

Renal & Adrenal Tumors

Renal & Adrenal Tumors
Arie Belldegrun, Alastair W.S. Ritchie, Robert A. Figlin, R.T.D Oliver, Edwin Darracott Vaughn, Jr Editors
2003 Oxford University Press
IBSN 0-19-850822-0

This recent technical book is intended for professionals. Like many specialty technical books, this is basically a collection of detailed reviews by different authors, including some of the most prominent doctors in the field. It is also very expensive ($285 new). Although it covers both kidney cancer and adrenal cancer, about 80% of it is devoted to renal cancer. Renal & Adrenal Tumors is edited by top doctors from UCLA, Cornell and the UK and many prominent specialists have contributed chapters. Although I haven't yet had a chance to review this book yet detail, it looks like subjects such as diagnosis, pathology, prognosis, and surgical techniques for localized RCC are emphasized more than therapy for advanced disease (which is still not exactly neglected). I understand Dr. Figlin has a new book on just kidney cancer which will be out soon.

Renal Cell Carcinoma: Molecular Biology, Immunology and Clinical Management

Renal Cell Carcinoma: Molecular Biology, Immunology, and Clinical Management
Ronald M. Bukowski, M.D. and Andrew C. Novick, M.D Editors
2000 Humana Press, Totowa NJ
IBSN 0-89603-781-9

This technical book is also intended for professionals, but is useful for determined patients. Like Renal & Adrenal Tumors, each chapter is contributed by a different author. Some chapters are more accessible than others (some are way over my head). Each chapter has numerous references to the original research papers. The topics include, diagnosis and staging, a review of the pathologic sub-types of renal cell cancer, several chapters on immunotherapy, surgical techniques, hereditary RCC, and treatment of the less common sub-types (unfortunately not including papillary RCC). This book is also expensive (over $150 new) and now out of print.

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