This information is supplied by Rob MacNichol:

The URL for this guide is: http://geocities.datacellar.net/HotSprings/Spa/1350/hclsummary.html

Many new folks have come to Mark's HCL site and have many of the same questions. Many are long time friends and have come here to share experiences beyond HCL. Because Mark has set up this site, and because I live in close proximity to Scripps Clinic where 2cda was developed and used, I have put together some information that may help those who want to contact Scripps for second opinions, testing or general information about Hairy Cell Leukemia.

Hopefully, this will help those with questions. I know time is of the essence. Those who post on this site will appreciate the phone numbers that follow, and the WWW site for Scripps. Should you find these numbers outdated please let us all know with a post.

Much of this information is already out on Mark’s HCL site but it is buried in different postings that have accumulated over the years.

The Scripps site page is at:

Dr. Saven the research specialist and leader in HCL treatment has a page at:

Here is the page for Clinical trials at:

Here is DR. Saven’s E-mail address.

ASaven@scrippsclinic.com

I go to the La Jolla Clinic located on Genesee Ave. Dr. Saven sees me there. The phone number is only one of several which I will add below.

Doctor Saven's secretary may be reached at (858) 554-9489

The FAX number is (858) 554-8946.

Carroll Burian (858)554-9375 (she is the Clinical Trails Assistant and answered all my questions. I found her to be very helpful).

Paulette Geiger (858)554-8384 (her title is Cancer Special Services and gets patients into the system for testing).

Carrie Bryntesen (858)554-8564 (She is the research nurse).

I'm told that Faxing Dr. Saven should be done by your doctor. He won't respond to patients. You may be mailed a bunch of information. I believe that to be under Dr. Saven’s care you must be a California citizen. However, there have been many out of state - and out of country people treated by him. They return home to their primary doctor, I suspect.

Dr. Saven has referred to HCL as a non-Hodgkin’s lymphoma, and as simply a lymphoma. It is a slowly progressing disease, and according to Saven the best treatment for HCL is no treatment until one of three following blood counts drop to a critical level. These levels can be quite low before he recommends treatment. As I recall he will treat when one of the counts hits bottom (i. e. WBC=1, Hemoglobin=10, or Platelets =100). If either one or all meet this level he recommends 2CDA.

2CDA has the best success for most sufferers of HCL. It is somewhere in the vicinity of 80% successful. Successful is total or partial remission. After treatment some people go for years without any problems. Some need retreatment after a few months. Some have a return of HCL every couple of years.

Each time 2CDA is used it destroys some of your healthy bone marrow. This has a cumulative effect (the more you use it, the more bone marrow you will lose).

Some possible alternatives to 2CDA are:

There are newer approaches to HCL treatment that may not harm the marrow at all, or very little: One of our best sources for HCL info was Don Knox. While Don is extremely knowledgeable, it has become apparent that over the years many others on this site have been able to contribute remarkable information especially for those among us who have special problems with rashes, slow recoveries, and just plain old anxiety—which is probably most of us at one time or another. Don, Thumper and Keith happen to have HCL-V (Hairy Cell Leukemia-Variant). In this case the white cells go up, compared to HCL patients whose white cells go down. HCL-V does not respond much to 2CDA. HCL-V sufferers will benefit from the newer drugs coming out, as will we all.

For those of you who are new to Mark’s site there are two pages one ACTIVE, and one left for archive reference. They may be accessed at:

http://messages.yahoo.com/bbs?action=m&tid=0c190d1a1d160b1d1d&sid=0c190d1a1d160b1d1d0&mid=1&g=1

and

http://geocities.datacellar.net/HotSprings/Spa/1350/geobook.html

This section has ARCHIVED files that contain a lot of experiences concerning HCL. I recommend that you read them for a view of what HCL is like. Most people have a relatively good experiences with treatments for HCL, but a few - as you will read - have a battle on their hands. As near as I can tell, most people relapse eventually. Second treatments are not unusual and a few have had three or four treatments with 2CDA alone, not counting other drugs or spleenectomy. I think JC just about holds the record for treatments. As I understand it he’s had four 2CDA treatments each remission lasting about two years. He started treatment with BL-22 but science failed him on that treatment and he turned to RETUXAN. I had RETUXAN and it did not work for me. However, this one sure did work for JC, and if you allow him I’m sure he can tell you something of his experiences. OH! I had 2CDA, came out of remission. I had Retuxan, which did not work. I had 2CDA again and went into 100% remission. This was over a three year period. My point is that considering JC and others here there is a lot of hope with HCL, A lot of us have had excellent results even though things looked quite bleak at times. So hang in there. The of course some folks get one treatment and that seems to be all they ever need, at least for 10 or 12+ years. Many people have different blood count results after treatment, however, if you can get past the mental stress, you will find that even with lower blood counts you will be fine.

Robert B. MacNichol

rmacnichol@ivc.edu

If you are curious about me outside of HCL I have a home page with various ways of contacting me at:

http://geocities.datacellar.net/rbmac5y/FFZ_Home_page.html?1027467644185

If you notice any thing that’s incorrect concerning the above information please feel free to contact me.

Thank you

Rob MacNichol

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