Patients

Are you a patient receiving treatment for Recurrent Respiratory Papillomatosis? Please help us by taking this survey so we can create a comprehensive epidemiological database of patient information. Your personal confidentiality will be maintained at all times.

Stay connected with us and join our Recurrent Respiratory Papillomatosis Foundation email listserve. This listserve is intended for patients, family members and professionals dealing with Recurrent Respiratory Papillomatosis as well as related diseases and conditions. It is meant to connect members of the RRP community with each other and to supplement the webpage, other organizational websites, the RRPF Newsletter and message board of the RRPF.
To subscribe, simply send a blank email to: RRPF-subscribe@yahoogroups.com

Learn About Adjunctive Therapies

Adjuvant or adjunct therapies are generally considered non-surgical treatments that are used along with surgical excision of papilloma to reduce or eliminate the need for surgery.

Adjunct Therapy and Protocol Update:

The following reports of statistics and clinical research involving RRP therapies, represents a best effort to make an accurate and objective presentation of information from surveys, articles submitted by investigators, personal communications and reference to literature. Where appropriate the RRPF has provided its input in a constructive manner which we hope will best serve the RRP community.

Therapy
Users
No
Improve
Comp
Partial
133
61
72
27
45
DIM1
7
2
5
1
4
61
26
35
5
39
Acyc
31
20
11
4
7
19
13
6
1
5
Retin
16
10
6
0
6
15
6
9
3
6
20
2
18
4
14

Table 1. Patient/family assessed impact of adjuvant therapies reported (Summer 2002).

1. In most cases the patient/parent has not specifically noted whether they are using I3C or DIM. Please help us assess the impact of DIM vs. I3C by including the specific name of the product that you are using.

Experimental therapies for which the RRPF has no documented patient supplied statistics:

Cimetidine (Tagamet)

HPV Vaccines

Omega-3 Fatty Acids (Fish Oil)

Some notes regarding the above table:
The therapies are abbreviated as follows, I3C/DIM = indole-3-carbinol (I3C) or Diindolylmethane (DIM), IFN = interferon, Acyc = acyclovir, PDT = photo dynamic therapy (*thus far only 1 patient has reported who has used the new agent mTHPC and they have indicated a complete response) , Ribvrn = ribavirin, Retin = retinoicacid or accutane, Mumps = mumps vaccine. In the category of other therapies used, improvement has been noted using the following treatments: Echinacea and Thuja (homeopathic anti-virals), a mixture of vitamins including vitamin C and vitamin A, ShapeRite immune formula, topical 5-flourouracil (5FU), bleomycin and cobalt. (Please see the I3C Update in the RRP newsletter issues, regarding side effects for some of these treatments.)

Patient Statistics

The statistics that follow are based on RRPF questionnaire responses. Although suggestive trends are apparent, there has been no attempt to determine statistical significance, so caution is urged in drawing conclusions from the numbers below. In addition to these data, results regarding adjuvant therapies are presented on page 5. Tables 1 – 3 provide a breakdown of the patients in the support group who have reported to us, based on sex and age; the sample sizes range from 486 to 547 for tables 1-3.

Table 2. Total number of patients in support group reporting.

Females Males
All Ages 243 304

Table 3. Distribution of patients based on current age brackets and sex.

Age Groups Females Males Total
Under 10 50 50 100
10-20 67 57 124
20-30 25 17 42
30-40 39 44 83
40-50 19 38 57
Over 50 24 56 80

Table 4. Distribution of patients based on diagnosis age brackets and sex.

 Age Groups

 Females

 Males

 Total

 Under 10

 165

 151

 316

 10-20

 14

 7

 21

 20-30

 23

 34

 57

 30-40

 12

 43

 55

 40-50

 11

 30

 41

 Over 50

 6

 15

 21

Table 5. Distribution of respiratory papilloma sites of involvement based on responses from 367 patients.

 Site:

 J-O

 A-O

 Total Patients

 above cords

 112

 48

 160

 at cords

 193

 151

 344

 below cords

 91

 41

 132

 tracheal

 47

 16

 63

 bronchial

 26

 7

 33

 lung

 18

 4

 22

Table 6. Distribution of surgeries for RRP

 

 JO-RRP

 AO-RRP

 Total

 1-10

 64

 102

 166

 11-25

 46

 36

 82

 26-50

 34

 19

 53

 51-75

 15

 2

 17

 76-100

 17

 0

 17

 >100

 22

 3

 25

 >200

 5

 2

 7

 Total Responses

 203

 164

 367

Table 7. Answers to some RRP research questions.

 

 Was patient nursed?
J-O / A-O

 Was patient exposed to smoking?
J-O / A-O

 Yes

 71/71

 88/101

 No

 115/64

 88/44