oncologists are not referring patients to clinical trials in significant numbers. Many
patients feel disloyal investigating trial options on their own. Treating physicians may
not be able to make informed judgments about emerging treatments, or they may not have
any incentive to send patients elsewhere for treatment. For cancers that are incurable
with "standard" treatments, emerging treatments ought to be a major
consideration instead of a rare consideration. How else can we hope to improve survival?
What should add urgency to this problem is the growing awareness in the patient community
that "standard" therapies can often preclude the use of emerging therapies.
perspective comes from the idea that a treatment with higher specificity is less likely to
undermine their general health, and, importantly, their immune status.
The following excerpt from CancerConsultants.com indicates that
patients are seeking better treatment options and that they will participate in clinical
trials if they can locate a desirable study:
The new clinical trials application is a response to the
increasing demand for easier access to cancer information. After extensive market research
to evaluate how and why cancer patients use the Internet, CancerConsultants.com
learned that patients rated clinical trials information as the most important Internet
service, with 60% of patients actively seeking access to clinical trials.
"Although clinical trials are crucial for improving
cancer treatment, fewer than 5% of cancer patients actually participate in clinical
trials. By removing some of the barriers to enrollment, the Internet will significantly
increase clinical trials accrual," Weaver said.
* Patients with indolent incurable cancers provide an
opportunity for testing new agents. Its time to seize that opportunity and end the
practice of wasting it on watchful waiting.
* Design studies that include untreated patients with
incurable indolent cancers in front-line clinical trials of low toxic therapies. This will
provide an opportunity for investigators to evaluate new therapies on patients with good
immune status (not yet compromised by cytotoxic therapies).
* End the catch 22: Patients with indolent and incurable
lymphomas feel that they must use an approved toxic therapy (that cannot cure them or
improve survival) before trying emerging therapies that might improve survival with less
toxicity. Adding insult to injury is the appreciations that majority of approved standard therapies can
undermine the patients ability to benefit from emerging therapies.
* Build better trials and they will come. News of low toxic
clinical trials travels fast. Recently, a vaccine study that did not require pretreatment
with chemotherapy filled in one week.
* Provide incentives to treating physicians to enroll their
patients in clinical trials, and communicate to the media that this is the proper role of
* Communicate to patients that it is not disloyal to seek
treatment in clinical trials, and that they do not need their treating physicians
approval to do so.
* Routinely provide treating physicians with clinical trial
information for specific blood cancers. Emphasize and encourage participation in studies
for incurable cancers.
* Final note: reverse the notion of getting creative when
things are going bad for a patient. Lets get creative earlier in the course of the
disease when the patient is most able to benefit. Patients who are losing ground are not
going to have the will or ability to evaluate, enroll, or benefit from a clinical trial.
An example of why creativity is needed earlier:
Karl and group; Have been lurking for a long time now, as
I've been going through some unpleasant times.
Original diagnosis Oct. 96 - Follicular small cleaved cell -
Stage IV Nov 96 Fludarabine X6 - Very successful. No activity until June 2000. July 00,
Rituxin X4 with mixed results. Onc wanted to repeat Fludarabine, but I asked for a 2nd
opinion, a Lymphoma Specialist at Univ. of XYZ. He agreed that Fludarabine was as good as
anything else. Started Fludarabine in March of 2001. Cat scans after 3 treatments showed
After 4th treatment (June) became very sick. Cat scans and
BMB showed disease had become refractory to Fludarabine. Bone marrow involvement
extensive. Red Count dropped to 7 had first red cell transfusion, and started Epogen. The
last part of July started Salvage regimen I.C.E. Counts dropped and would not come back.
Platelets dropped to 7. First Platelet transfusion. During 6 weeks between I.C.E.
treatments White Counts dropped to .8. I took Nupogen for 10 days following treatment and
it only brought the White Counts up to 2.1 through 3.0. First of Sept had 2nd I.C.E
reduced by 25 %. Counts dropped again, not as critically as first time, but low enough
that I had to have more platelet Transfusions. When it was time for my 3rd I.C.E. counts
still not high enough so they started Rituxan. Have had 3 treatments of Rituxan, repeated
cat scans show new growth.
Next Monday new treatment of High Dose Methotrexate
w/Leucovorin Rescue and Vincristine, and Dexamethasone will be started . My Onc. said we
had to get creative because nothing seems to be working.
Has anyone had any experience with this new regime she's
recommending? I would really appreciate any feedback anyone has. It's been a long tough
year. Sorry for the lengthy post. I tried to shorten as much as possible.
1 Each Subsequent Therapy Results in Diminishing Response Rate
and Duration of Response in Low Grade or Transformed Low Grade
Non-Hodgkin's Lymphoma. abstract
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