HCL Patients Page



It has occured to me since I wrote the diary that there are a great number of HCL patients that are using the Internet to get information about HCL, to attempt to answer questions about the disease and to locate others with whom they may communicate about their situation. As a result, a decision was made to develop a second aspect to this website devoted to helping others with HCL or their loved-ones to get information, ask questions of other sufferers, locate others with HCL, and so on. The Hairy Cell Leukemia Support Group was created with this in mind. It is a group of people with intimate knowledge about Hairy Cell Leukemia; they've either had it, have it, or practice medicine on it. You can pose a question to this group by writing a letter to the HCL Support Group. All members of the group will receive your letter and then will decide if they can respond to your issue.

Additionally, a guide needs to be developed with basic information about the disease and its treatment. As of now, The Guide to Hairy Cell Leukemia only consists of some summary information about treatment and the various comments, stories and information supplied by the readers of this site. To make further information available to sufferers of HCL, we need to create as much communication between ourselves as is possible, but that can only work if you, the person afflicted or concerned takes an active role in this.

My sincere thanks to Geocities for providing the space for this helpful website.

Mark Taubensee


Do you have a question about HCL?

If you have a question about HCL, write the Support Group directly (in care of me). Your inquiry will be forwarded to all members of the Support Group. If they have information about your particular situation, they will respond. You may also pose your question to the general readership by writing to the Message Board located on the main page. Your answers will come from other patients and persons familiar with HCL who respond by sending you an email, so remember to include your email address or other information you feel appropriate.

Do you want to talk to someone who has had HCL?

Go to The HCL Message Board and simply mention that you would like to talk to others about your situation and be sure to leave your email address. They will write you, giving you their phone number, so you may call them. Of course, you could leave your phone number in your comment, but that would necessitate expense on their part to call you.

Former sufferer of HCL?

You can be of great benefit! Afterall, you have been through this thing. You can become a member of the HCL Support Group. You can also start monitoring the Personal Stories, Comments, Concerns and Questions section, and the HCL Message Board. You'll know who you can help by writing them or receiving their calls.

You can also participate by sending information to me, that I will post in the site in some way. We need to create this "Guide to HCL" that will contain all kinds of practical information for people who have contracted this disease. You know something that can be of great help to new patients. For example: if you lose your appetite during chemotherapy, what foods might be best. Things like this. There are several categories of information that would be helpful like: how to break the news to others, medicines that helped me, how to deal with doctors, and so on. You can help to select the categories of information that will be included and responded to. Get it? Then the information will be compiled and placed under headings that will be continually added to, to keep information current and broad.

What else can be done?

This site will be the result of all of us working making suggestions about what you think needs to together. You can have an active part in it by be added (or deleted), or anything else. What would you include if you had this site?

I'll need help to make this work, as it is information from many sources that will make this site the most helpful. Become a partner in this effort. Let me know what role you'd like to play. Dare to daydream, to visualize how this thing can be most effective. Let's go!





this page hosted by Get your ownFree Home Page