My good friend, Al, suffers from chronic lymphocytic leukemia (CLL), where the lymphocytes proliferate and take over. It appears to be a heterogeneious diagnosis, since some people go for years with no symptoms except for really wierd blood counts before symptoms start to show up...fatigue, anemia, night sweats, swollen lymph nodes. On the other hand, some patients are diagnosed and go down hill rapidly.
The National Institutes of Health is doing a study on the natural history of the disease in untreated (ie, watch and wait, or watch and worry) patients, and we applied for Al to participate almost two years ago. We finally were invited to come to Bethesday, and we returned yesterday. Thought some of you might be interested in how such things work, so I am copying below my report to the ACOR-CLL list.
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FINALLY, after over a year's wait, I accompanied my friend, Al, to NIH to be screened for
the CLL natural history study. (For those who are still waiting, or who would like to be included,
we learned that they currently have about 150 enrolled, hope to get to at least 250, and probably
500 before the study is closed.)
The principal investigators we met were
Adrian Wiestner, MD, PhD of the NHLBI Hematology Branch and
Gerald Marti, MD, PhD, Cellular and Tissue Therapy Branch, Division of Cellular and Gene Therapies, Center for Biologics Evaluation and Research (CBER), FDA
Dr. Marti's area of expertise is in the development of technology for such things as flow cytometry for cellular anaylsis.
The study was transferred from the Cancer Institute to the Heart Institute Hematology Branch about a year ago since Dr. Wiestner is the
one with the real interest in CLL.
Al has been in watch-and-wait for about ten years. We wondered if they would find him "exciting" enough to include in the study.
The research nurse, Susan Soto, assured us that they would not have invited him if they did not think he would meet their criteria (big sigh of relief.)
This visit was primarily a repeat of all his blood work, a physical exam, and a consultation with the investigators. They concurred that he has been getting
excellent care from his local hem/onco. However, his local doc has been toying with the idea of at least putting him on prednisone (which Al has declined)
and the NIHers concurred that he should not do this, at this point. They did find enlarged lymph nodes (which they are itching to get their hands on).
He will go back to NIH in April for a CT scan and assignment to at least one study they have him in mind for.
It was most impressive to be packed into one small exam room with the principal investigators, the research nurse, and two fellows and realize
all the expertise surrounding us. They do emphasize that they are doing research, not "treating" you. However, if anything in your condition changes
they will be ready to make additional recommendations for treatment, or put you into an appropriate therapeutic trial at NIH.
A few negatives....this first visit is totally at our expense. We understood that he would be reimbursed for the next trip, in April....however this is only half
correct. He will not be formally enrolled in the study until the morning of his arrival at NIH, so half of his airfare will be on us. The reimbursement for a hotel
is $60 per night. I DARE you to find a convenient hotel in Bethesda for anything near that, even with their "clinical patient" rate. Still, it is worth it for the
quality of the evaluations and the ability to contribute to the knowledge base on CLL.
Some totally extraneous thoughts....I used to work at NIH, but haven't been back to Bethesda for about 25 years. In the meantime they have constructed the
metro (very easy to get from Reagan National Airport to Bethesda!) and COMPLETELY redone downtown Bethesda. As we got off the Metro and started to
walk to our hotel, I couldn't even recognize the street we were on and had to ask for directions!! Embarrassing!! The NIH campus also had some drastic changes.
It looks like a university campus...lots of buildings all over, lots of grass and lovely trees. You used to be able to walk in, wander around, eat in the cafeterias or picnic.
Not any more. Since 9/11 all government facilities have really upped security. The entire campus is surrounded by a high metal fence. Only two entrances are
open to the public. NIH furnishes shuttle transportation from local hotels and airports to the Clinical Center. Our bus stopped at the Patient Entrance. We got
off and basically went through a screening exactly like TSA airport screening and were issued an ID badge to wear. Then back on the bus which delivered us to
the Clinical Center. It is sad that the world has come to this.
Sara Anne
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