CLL Diary: Introducing www.cllforum.com

Monday, February 13, 2006

Introducing www.cllforum.com

The CLL community has a new internet meeting place: www.cllforum.com

This site has been put together by people with a lot of energy and dedication and I have agreed to serve as a moderator.

Here's the "official" announcement:

We are writing to announce the launch of a new internet resource for CLL patients and their caregivers.

This new site uses a different format than that of the ACOR listserv. It offers an expanded ability to communicate and interact, with subforums for a variety of CLL-related topics, as well as some off-topic options for those who just want to talk about other things. The software allows you to upload pictures, use an avatar to represent you in your posts, change font sizes and colors, use emoticons, and so on. We hope this will be a creative and fun way to communicate and build an online community. Our format also allows you to pick and choose from a menu of things you want to read about and participate in -- for example, those who want to discuss CLL treatment can do so without being interrupted by those who want to chat about the weather. There are no banned topics and we have areas for freewheeling debate.

CLL Forum is not intended to compete with the ACOR list, of which we are all members and will remain members. ACOR is an invaluable resource and its members have gone on to create any number of useful complementary websites, including CLL Topics, the Yahoo discussion groups, and various blogs. We believe this new site will be a helpful part of the constellation of places where patients and their caregivers can go for information and support.

We welcome you to check it out, participate, or just lurk, and we are interested in your comments and suggestions. Your input will help us build the site and tailor it to your needs.

Introducing the CLL Forum: www.cllforum.com

Sincerely,
Steve Madden
Denise England
Jenny Lou Park
Kurt Grayson
David Arenson

That pretty much sums it up. Stop by and check it out!

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CLL PROGNOSTICS & PLANNING

As we patients eventually learn, CLL is not a one-size-fits-all disease. Some cases are indolent, some progressive, some quite aggressive. Prognostic tests can give us a much better idea of what type of CLL we are dealing with. Knowledge is power, and I believe patients should have these tests and know what they mean. They do not provide a complete picture, and sometimes clinical symptoms tell a different story than one might expect from the results, but they are important tools that can help determine the when and what of treatment.

Here are the tests: IgVH mutational status, FISH, ZAP-70 (as done at a research institution such as UC San Diego, not a commercial lab), and CD38.

My tests indicate a progressing disease. I am IgVH unmutated and ZAP-70 positive, as measured at UCSD. I developed an 11q deletion per FISH in 2006, which disappeared in 2012 for some mysterious reason, giving way to a 13q deletion. I am CD38 positive now, despite having been CD38 negative for years.

Given my tender age, I will always be navigating treatment options if I want to have any hope of living a normal life span. Knowing my test results helps me plan ahead, and knowing the possible end point in my battle with CLL helps me plan what treatments make the most sense, and in what order. Like many CLLers, I am encouraged by the progress being made by new drugs such Ibrutinib and ABT-199; not to mention the news that T-cells can be supercharged to wipe out the CLL -- in much the same ferocious way that macrophages went after my red cells during hemolysis with AIHA.

The "when and what" of treatment is a subject of great debate among CLL experts as well as patients and local doctors. I tend to take a conservative approach, ever aware of the fact that overall survival in CLL depends not just on the effectiveness of your first treatment. What you do for an encore -- your ability to respond to treatment again, and then again -- may determine how long you get to stand on the stage. The late CLL expert Dr. Terry Hamblin once wrote that CLL is a war of attrition, and I am ever mindful that such wars are won, if they can be won, slowly.

Whether my decisions ultimately are proved wise will be written in these pages. I began using single-agent rituximab (Rituxan) in 2004, adding the steroid methylprednisolone in March 2007 to combat AIHA. In October 2007, after a severe AIHA relapse that left me steroid refractory, I was treated with Rituxan + cyclophosphamide, vincristine, and prednsione (R-CVP). In January 2009, when AIHA and hemolysis of red blood cells returned, I had Rituxan + cyclophosphamide and dexamethasone (R-CD). I used this a few times to control the condition, with shorter and shorter periods until AIHA relapse. Starting in February 2010 I used Arzerra (ofatumumab) and Revlimid (lenalidomide), and then for a year and a half maintained control of the disease -- and the AIHA -- with Revlimid alone. Alas, the Revlimid came at a high price in terms of blood clotting issues, and as of 2012 I was treated with bendamustine and rituximab, which gave me a CR in the marrow and blood, leaving some swollen lymph nodes behind.

2013 is turning out to be my most challenging year yet, with the arrival of Richter's Transformation in April. Up to 10% of CLL patients can expect to develop Richter's, in which some of the CLL clones mutate into a more dangerous B cell lymphoma. Richter's is fatal in some 50% of cases, but it also can be beaten with chemotherapy and stem cell transplant. Read my latest posts for updates on my experience.

My best advice to patients is to gather all the facts you can about your CLL and then think ahead and plan ahead. Develop a long-term strategy, but expect to have to roll with the punches. And don't be rushed by doctors, family, or anyone else into a decision you are not comfortable with: Treating CLL is almost never an emergency. Take the time to learn and reflect, and then go with your intuition.

There are no guarantees that your choices will work out, of course, but at least you can rest assured that you put your heart and soul into making them. That sort of effort is the effort that can, with luck, beat cancer.

Quotes I Like

"The thing in life is not to know all the answers but rather to ask the right questions." -- Anonymous
"Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." -- Vaclav Havel
"The man who never alters his opinion is like standing water, and breeds reptiles of the mind." -- Blake
"We must be willing to let go of the life we have planned so as to have the life that is waiting for us." -- E.M. Forster
"Think of all the beauty still left around you and be happy." -- Anne Frank
“Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.” -- Greg Anderson, lung cancer survivor
"I had a choice to make when they said I was going to die. I could chose to live the rest of my life dying, or I could chose to live life until I die. And I chose to live life'. -- Anonymous cancer patient
"Life can only be understood backwards; but it must be lived forwards." -- Soren Kierkegaard
"It's always something. If it's not one thing, it's another." -- Roseanne Rosannadanna

CLL Diary

Monday, February 13, 2006

Introducing www.cllforum.com

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