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Patients Against Lymphoma


Changing the Treatment Paradigm for indolent NHL: 
Should we treat early with novel agents?

Draft: 01/16/2014

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Treating 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.[1] This 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. It’s 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 patient’s 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 physicians.

* Communicate to patients that it is not disloyal to seek treatment in clinical trials, and that they do not need their treating physician’s 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. Let’s 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.

-Karl Schwartz

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 improvement.

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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