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Patients Against Lymphoma


Support >  Survey

Last update: 07/02/2010

Patient Preference of Chemo-based Therapy following
Relapse of indolent follicular lymphoma (Completed)

Results Below


An investigator requested help in estimating patient interest in vaccine therapy (option C),
relative to similar standard treatments for follicular lymphoma. 
(The reason only one investigational option is included.)

Objective of survey is to estimate:

1) Patient preferences among competing chemotherapy-based protocols
2) Patient confidence in taking part in clinical decision making.
3) Patient interest in clinical trials - following relapse from initial therapy for follicular lymphoma.

1:  Which of the following chemotherapy-based protocols would you prefer following relapse from any prior Rituxan-based therapy?
For the purpose of this survey, imagine that only the following chemotherapy-based protocols are recommended based on your clinical circumstance.    

  A) Rituxan-based chemotherapy followed by observation

B) Rituxan-based chemotherapy followed by maintenance (regularly scheduled) Rituxan

C) Chemotherapy with No Rituxan followed by tumor-specific vaccine
         (assuming it is proven effective and one day approved by FDA)

D) Chemotherapy with No Rituxan followed by Radioimmunotherapy

E) No preference (will let my oncologist decide)

Note:  If desired, you can review information about the competing protocols by clicking the links above.

2:  How much confidence do you have in your answer to Question 1?

  A)   Convinced - would seek therapy elsewhere if my oncologist didn't agree.

B)   Confident - would consider my oncologist's opinion,
but would seek a second opinion if we did not agree.

C)   Moderate confidence - would inquire about my preference, but would follow my oncologist's advice.

D)   Low confidence -  would follow my oncologist's advice.

3:  Regarding clinical trials as a possible therapy, which of the following is TRUE:

    A) I would consider a clinical trial, ONLY if my oncologist recommended one.

    B) I would consider a clinical trial, even if NOT recommended by my oncologist.

    C) I would NOT consider a clinical trial.


4:  To confirm your diagnosis, select one of the following:

A)   aggressive lymphoma

B)   indolent follicular lymphoma

  C)   unknown lymphoma type

D) other indolent lymphoma


5:  Type your age  

Be sure to select an option for each question.

Thank you for participating!


Vaccine overview:

Vaccine therapy is experimental -  has NOT yet been proven to extend the duration of remission when given after chemotherapy, compared to observation. 

However, for the purpose of this survey, assume that it has been approved based on such evidence.

And that there is ample evidence of the safety of vaccine injections (which is already accepted). 

The goal of vaccine therapy is to "train" the immune system to recognize and eradicate residual tumor cells.

Outline of therapy:

1) A biopsy is needed to obtain the unique protein antigen (idiotype) from the tumor cells in order to produce a patient-specific vaccine. 

The idiotype antigen is then combined with an immune stimulant called KLH (forming Id-KLH).

2) Chemotherapy (most likely Bendamustine-based, or CHOP-like) without Rituxan is given to achieve a partial or complete response.

3) The patient then self-injects Id+KLH vaccine along with GM-CSF (an immune adjuvant)

See current study of vaccine therapy
produced by tobacco plant

Return to Question 1

Standard Chemotherapy Protocols for Follicular Lymphoma

Adapted from NCCN guidelines (2010): http://www.nccn.org/professionals/physician_gls/PDF/nhl.pdf

Therapy that can be given orally or by IV, depending on the type, such as:


Bendamustine-R (Treanda + Rituxan)


Cyclophosphamide (Cytoxan)


CHOP-R (Cyclophosphamide, Doxorubicin, Vincristine, + Rituxan)


CVP-R  (Cyclophosphamide, Vincristine, + Rituxan)


F-R (Fludarabine, + Rituxan)


FND-R (Fludarabine, Mitoxantrone, Dexamethasone, + Rituxan)


Chlorambucil, + Rituxan)

NOTE: Rituxan is almost always combined with chemotherapy based on studies consistently showing it improves the complete response rate and durations of the responses.

 Return to Question 1

Results of Survey

Survey responders: 139
Median Age 56 (range 29 - 77 years)

Preferred 2nd Treatment for follicular lymphoma (if chemo required)
Preferred 2nd Treatment No. %
R-Chemo, observation 19  14%
R-Chemo, maintenance R 36 26%
Chemo, vaccine (if approved) 36 26%
Chemo, RIT 23 17%
No preference 25 18%

Confidence in preference No. %
Convinced 18 13%
Confident 66 47%
Moderate confidence 45 32%
Low confidence 10 7%

Beware of confidence! ... blessed are the unsure, because they will continue to ask questions.

Would Consider Trials No. %
Only if Onc discusses 60 43%
Even If Onc Doesn't 72 52%
Never 7 5%

Limitations: The online community is a young "crowd" (median 56 years) and may have attitudes that do not predict those in the general population, which is ~10 years older. Further, the sample was non-random - which can lead to biased results ... for example, those with No Preference may be less likely to participate in the survey.  Further there is no way to be certain that people will correctly self-identify their preferences and attitudes.

Discussion: As we know, preferences are not equivalent to what is best - that will require comparative trials with long follow up to determine. We decided to leave out plain "vanilla" RIT and Rituxan (without chemo induction) to make the choices more comparable, anticipating that almost everyone would choose Rituxan if it was among the choices (in order to avoid the chemo).  We note further that the individual's unique clinical circumstances can be the critical factor in the selection of therapy. 

The survey was prompted by an investigator's request who hoped to establish that vaccine could compete with Rituxan as a consolidation option (assuming it is approved - and we truly have no opinion or expectation if it will prove to be effective or not).  This is the reason that only one investigational choice was provided.

What the preference data suggests is that if chemo is received as induction therapy that consolidation of some type is preferred to observation (to waiting for it to come back) ... in this group of patients, noting the above limitations.

Regarding vaccines: We expect that if vaccine was proven equivalent to Rituxan maintenance, in terms of efficacy (such as time to progression), the side effect profile would significantly favor vaccine ... so the high preference for vaccine (36%) was expected ... and we further expect that those favoring it over Rituxan would increase when presented with the relative safety data (again, assuming equivalence in other respects).

A caveat of vaccine therapy is that it requires a surgical procedure (a biopsy) to produce it. If this is a minor issue, we can't say. 

However, crystal clarity is not the rule in clinical science - more typically we have to deal with a tradeoff - studies showing one protocol better in potential efficacy, but worse in potential toxicity.  ... The answer requiring follow up sufficient to see a survival advantage for one versus the other protocol in randomly selected groups of patients.  Importantly, correlative studies are needed to help predict individual outcomes - to identify biomarkers that predict which individuals will benefit from which protocol, and what should be avoided.

Finally, until such time, we can expect that the opinion of our doctors will influence what is prescribed (probably significantly)... maybe not so much with this confident group, but almost certainly in the general population.

Many, many thanks to the participants!

Karl S (PAL)


Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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