Vol.7 No.2 An RRP Foundation Publication 1998 Fall
P.O Box 6643, Lawrenceville, NJ 08648-0643

____________________________________________________________________________________________________

Contents
… Opening Comments &emdash; p.1
… RRPF Organization Information - p.2
… RRP Remission News- p.2
… RRP Network News - p.3
RRP Web News - p.3
… RRP National Issues - p.3-4
Registry Update - p.3
Papillomavirus Conference - p.4
Atlanta Support Group Meeting - p.4
… Patient Statistics - p.4
… Adjunct Therapies - p.5
Indole-3-Carbinol-p.5
I3C and Bone Density &emdash; p.6
Indolplex News - p.7
PDT Update - p.7
… Research Activities Update - p.7
… RRP Perspective - p.7-8
… Patient Profile - p.8
… Memorial - p. 8
… Enclosure-RRPF Mission Statement, Information/Support Centers, subscription form

From the Editor

This issue of the RRP Newsletter is dedicated to RRP patient, Stephen Wright, who was a member of our support group since 1993. Steve died unexpectedly in August of this year from postoperative complications. A short memorial can be found on page 8.

The past six months were very busy for the RRPF. During that time, our web presence was upgraded signifigantly (see RRP Web News) . Bill Stern made a presentation at Johns Hopkins University as part of a workshop on RRP. In addition, Bill will also be making a presentation at the upcoming Papillomavirus Conference in January of this year (see enclosed abstract). The web presence and these presentations are very valuable to the RRPF and each of us as RRP patients/parents; as information on this disease is conveyed to the RRP community, including practitioners, researchers and of course those directly affected. This data (primarily gathered via the questionnaires we submit and update regularly as patients or parents of patients) assists the medical and research community in learning more about RRP.

We would like to thank Bill Stern, Dan Brown, Bill Widmayer and Susan Spock for upgrading and maintaining the web site. In addition we would like to thank Bill for the presentations and all others who assisted with the progress of the RRPF. We also would continue to welcome others who are interested in helping to gather information, assist with the web effort and write articles. If you would like to help in any way, contact Bill Stern or myself.

Chris J. Neuberger

(405) 749-8499;

email: Cneuberger@horizonfleet.com

P.S. Thanks to Lindsay and her friends Raquel, Megan, Allison, Sadie and Katie who helped stamp, address and stuff these newsletter mailing envelopes.

We are most grateful to all those individuals, medical professionals and corporations who have supported the RRPF. Although it is impossible to publish the names of all that contribute, we extend our sincere thanks to everyone who has supported our efforts.

Future donations from individuals, professionals or from the business community will be very much appreciated. Tax deductible contributions may be made to:

RRP Foundation
P.O. Box 6643
Lawrenceville, NJ 08648-0643

Do you donate to the United Way through your employer? You can select a "Donor Choice" option which would allow you to direct a donation to the RRPF as the 501 (c) (3) of your choice.

We would like to take this opportunity to acknowledge: Maura Weiner’s friends and family who, at Maura’s request, donated to the RRPF in lieu of gifts to Maura (for a special birthday celebration); also, our thanks to the friends and family of Stephen Wright, who were most generous in his memory.

To physicians and nurses: Please distribute copies of this newsletter to your RRP patients.
If you are not registered with the RRPF, please do so by completing the Practitioner Questionnaire enclosed.

RRPF Officers, Directors & Advisors

Marlene Stern
President
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 530-1443
marlenelin@aol.com

Bill Stern
Treasurer and Director
P.O. Box 6643
Lawrenceville, NJ 08648-0643
(609) 530-1443
wfs@gfdl.gov

Henry Woo, Esq.
Secretary
Medtronic International Inc.
Suite 2002, C.C. Wu Building
308 Hennessey Rd.
Wanchai
Hong Kong
henry.woo@medtronic.com

Diane Burke, RN
Director
Department of Otolaryngology
The Univ. of Iowa Hospitals and Clinics
E230 GH, 200 Hawkins Drive
Iowa City, IA 52242
(319) 356-1765
diane-burke@uiowa.edu

Susan Woo
Director
Apt. 2503
Parkside and Pacific Place
88 Queensway
Hong Kong
writeus@netvigator.com

[Please see the enclosure for a complete list of the RRPF regional and state coordinators]

Scientific Advisory Committee

Thomas R. Broker, PhD, University of Alabama at Birmingham Schools of Medicine & Dentistry
Haskins K. Kashima, MD, Johns Hopkins University School of Medicine
Linda Miller, RN, MSN, Children’s Hospital of Philadelphia
Robert J. Ruben, MD, Albert Einstein College of Medicine
Keerti V. Shah, MD, DrPH, Johns Hopkins University School of Hygiene and Public Health
Bettie M. Steinberg, PhD, Long Island Jewish Medical Center
Kathleen Sullivan, RN, Children’s Hospital of Boston  

The RRPF produces two publications semi-annually, the RRP Newsletter and the RRP medical reference service. The RRP Newsletter focuses mainly on the human and clinical aspects of recurrent respiratory papillomatosis and in this regard targets a broad readership, including patients/families, attending physicians/nurses, as well as researchers and the general public seeking to stay in touch with RRP from a clinical perspective. The RRP medical reference service serves those in the community seeking a more comprehensive understanding of this disease. Please help us by supporting these publications and other RRP services including patient outreach, support and advocacy.

Subscription Policy and Minimum Annual Donations
RRP Newsletter
Professional/Corporate - $25
Individual - $15
RRP Newsletter plus Medical Reference Service
Professional/Corporate - $40
Individual - $25
(see RRPF subscription form enclosed)
[Note: Back issues of the RRP Newsletter and Medical Reference Service ($10/issue) are available upon request, subject to availability]

RRP Remission News

By Marlene and Bill Stern

These very brief patient profiles are intended to let you know that some of those with RRP are doing quite well.

Five year old Russell from South Carolina now appears to be in remission since March of this year. He had been having surgery about every 8 weeks since his diagnosis in May of 1994. He tried I3C for a 4 month period at the end of 1997, with no apparent improvement at that time.

Fourteen year old Eric, who is also from South Carolina, has now been in remission for at least a year and a half. He had been taking I3C for about a year before his remission started and continues to take it now.

Twenty year old Julie from New York has been in remission since October 1995. She has been taking I3C. Julie had been in a long remission previously and then had two surgeries before going back into her last remission.

Others still in remission include: Seven year old Ariel from California; Steph from Florida, age 25; Jeff from Illinois, age 51; William from Illinois, at age 74; Ten and a half year old Anthony from Kentucky; Andrea age 32 from Louisiana; Kevin from Maryland, age 39; Cara from Michigan at age 16; Emily from Michigan, now 10 years old; Leah from New Hampshire, age 18; Lindsay from New Jersey, now 9; Linda from New Jersey, now age 43; John from New Jersey at age 47; Melissa from New York, who is 9; Rita from Pennsylvania now 5 years old; Ralph from Pennsylvania at age 71; Kaitlyn from Tennessee, now 6 and Smokey from Virginia, age 27.

RRP Network News

Our international support network has grown to approximately 420 respiratory papilloma families. Patients range in age from about 2 to nearly 84 years and are located in 44 states, the District of Columbia, three Canadian provinces, the United Kingdom, Spain, Macedonia, Croatia, Morocco, Chile, Hong Kong, Brunei and Australia.

Our thanks to all who have taken the time to fill out the RRPF Patient/Therapy Survey. Please note that there are some additional questions regarding adjunct therapy side effects. Also there is a box near the top of the front side which, when checked, will alert us to an address change; there is a box below the name and address section which we ask you to check if you do not want your name and address information to be included in the RRPF Patient Directory. We are requesting the information contained in this survey be made available for RRP research. In this regard there is a place in the survey to grant permission.

As our support network has grown, we have become more dependent on the patient questionnaires to keep our database of RRP patient information up to date. So if you haven't completed a questionnaire in the past, please take a few minutes to fill out the form enclosed. If you have previously filled out a questionnaire, you need only identify yourself, mark UPDATE along the top front of the form and answer only those questions where you have new or updated information to provide. Please return the surveys to Marlene and Bill Stern. (See "RRP Web News" article below for information on completing and submitting surveys via the World Wide Web) In addition, RRP families, please review the Patient Directory listings and notify us regarding any corrections, omissions or additions. If you are not included in the directory and would like to be (or vice versa), please notify Bill or Marlene Stern.

....................................................................................

Information exchange throughout the support group and the RRP community remains a primary focus of the RRP Foundation (RRPF). In this regard, we very much encourage the use of the Internet and World Wide Web (WWW) as an effective and efficient means of disseminating, sharing and collecting information throughout the RRP community.

The RRPF maintains e-mail lists and a website with a new easier to locate URL address, i.e., http://www.rrpf.org. We have a "Bulletin Board" page for posting announcements and happenings relevant to the RRP community, so if you have an announcement related to RRP, please let us know about it by e-mailing us (see page 2 for addresses). Some additional features include: 1) the capability of filling out and submitting the RRPF Patient/Therapy Survey 2) an expanded library of RRP Newsletter and RRP Reference Service back issues; 3) a Q&A with RRP Experts section which allows members of the RRP community to have questions and comments posted with responses posted from a variety of RRP experts. Via e-mail and the website bulletin board, we will keep you informed of any new features. Links are maintained with other sites relevant to RRP, including the RRPwebsite and the website of the ALPF.

If you have some experience/expertise with the WWW and would like to help us improve our website, please contact Bill Stern.

RRP National Issues

A number of proposed scientific and clinical studies involving promising therapies for the treatment of RRP are in need of funding. Government agencies are a very significant source of support for these RRP research efforts. In this regard we continue to urge you to contact your congressional representatives and senators to make them aware of RRP and mobilize their support. For names and addresses of specific key governmental officials see the RRP Newsletter Spring 97 issue.

....................................................................................

The table that follows summarizes information obtained by the Centers for Disease Control and Prevention (CDC) for their RRP National Registry. Site coordinators at 18 medical centers have submitted data on children with active RRP aged 17 years and younger. As of October 15, 1998 there were 387 children in the registry representing 7849 procedures (both clinic and OR).

Site #
(CDC
code )

mean
age/
site
(yrs)

mean
years
         w/RRP

Mean
Procedures/
Child

* Centers for Disease Control and Prevention

Mail Stop A-15, 1600 Clifton Road, NE..

Atlanta, GA 30333

The 17th International Papillomavirus Conference will be held in Charleston, South Carolina January 9th &emdash; 15th , 1999. The following are scheduled topics that are of particular interest to the RRP community.

… Immunology and Vaccines I, II and II

… Presentation on Imiquimod, an interferon inducer

… Main Session Introductory Remarks- RRPF Scientific advisor Dr. Tom Broker is among the speakers.

… Recurrent Respiratory Papillomatosis (co chaired by RRPF scientific advisors Bettie Steinberg, Ph.D. and Haskins Kashima, MD.)

… Epidemiology I

… New Therapeutic approaches to papillomavirus-induced diseases

Bill Stern, an RRPF founder and director, will also be presenting at this conference. The abstract can be found in the Research Activities section of this newsletter.

Additional information regarding the meeting, accommodations and registration is available at http://www.pvconf99.org or by clicking on "HPV Meeting Information" from the RRPF homepage.

If anyone is interested in attending please contact Bill Stern, who will explain how to register utilizing the RRPF discount. If enough RRP patients/parents do attend, we will try to arrange to have a national RRP support group meeting.

............................................................................…..

The latest meeting of the RRP Atlanta Support Group was held on October 1st, 1998 at the Sheraton Four Points Perimeter Hotel. Dr. Lori Armstrong gave the group a presentation on the The National Registry for Juvenile RRP, which is being conducted by the CDC.

In attendance were RRP patients, Erin Davis, Sheppard Vars, Bill Widmayer, Christina Lancaster, Caroline Dugger and Shanda Bridges (mother of a 7 year old RRP Patient). Christina is a regional director for the RRP Foundation. Caroline and Shanda found out about the meeting from a posting on the RRP website. Interestingly, they are both from Montgomery, Alabama area and met for the first time.

After the presentation, Dr. Armstrong asked the patient group how each was diagnosed with RRP, and how long the process took. In almost all cases, the diagnosis process took longer than a year.

Thanks to all who attended and special thanks to Dr. Lori Armstrong for her presentation to the group.

[Ed. Note: For those that are interested in attending the next Atlanta Support Group meeting, please contact Bill Widmayer.]

RRP Patient Stats

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 322 to 375 for tables 1-3.

Table 1. Total number of patients in support group reporting

Table 2. Distribution of patients based on current age brackets and sex

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

Table 4. Distribution of respiratory papilloma sites of involvement based on responses from 179 patients

Table 5. Birth Statistics from Patient Support Network*:

Cesarean birth in 16 cases - 267 responses
juvenile onset: 10 of 166 responses
adult onset: 7 of 101 responses
Patient is first born in 136 cases - 255 responses
juvenile onset: 104 of 157 responses
adult onset: 32 of 98 responses
Patient was adopted in 38 cases - 270 responses
juvenile onset: 35 of 169 responses
adult onset: 3 of 101 responses
Mother’s ages - 123 responses (juvenile onset only)
Under 20 = 39
20 -> 25 = 41
> 25 = 43
* Juvenile onset was defined here as diagnosis age <= 14.

Fig. 1. Surgical frequency versus diagnosis age

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.

Adjunct therapy survey responses from 254 patients/families have been received. Of those responding, 95 indicated that they have not used any adjunct therapies and 159 responded that they have tried adjunct treatments (many have tried more than one). The most reported therapy was I3C/DIM with 129 users and next was interferon (IFN) with 71 users responding. The patient/parent assessed impact of some adjuvant therapies is summarized in the table below. In this table the sample sizes include only the subset of adjunct therapy users who indicated some response to a treatment, either some improvement (Improve) or no impact (None). If some improvement is noted, it is further broken down into either a complete response (Comp, i.e., no new growths seen for at least two typical surgical intervals) or a partial response (Partial)

Table 1. Patient/family assessed impact of adjuvant therapies reported

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 (using Photofrin), Ribvrn = ribavirin, Retin = retinoic acid 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 this issue and previous newsletter issues, such as the RRP Newsletter Spring 97 issue regarding side effects for some of these treatments.)

Finally, we continue to remind our readers that these results are based on patient perspectives. Although the survey encourages objectivity and quantitative assessment as much as possible, these analyses cannot replace well designed clinical trials and research. Furthermore, since sample sizes are generally small and no statistical significance tests have been applied to data in the above table, one must interpret these numbers cautiously, especially when considering the natural variability of RRP. However, we do hope that this information can provide some guidance for those patients seeking adjunct therapies as well as those pursuing RRP related research.

....................................................................................

For background information about the impact of indole-3-carbinol (I3C) on estrogen metabolism and how this subsequently may act to reduce the growth rate of respiratory papillomas, see the RRP Newsletters Fall 93 through Fall 94 and Fall 97 for DIM, as well as Bradlow et al., 1996 J. of Endocrinology 150, S259-S265; Newfield et al., 1993, Anticancer Research 13, 337-342.

If you are interested in obtaining more information about clinical trials involving I3C, please get in touch with one of the principal investigators as follows:

University of Pittsburgh:

Gayle E. Woodson, MD. - (901) 448-7677
Jerome Thompson, MD. - (901) 572-4400

The RRPF continues to encourage research studies involving I3C as an RRP adjunct therapy. In this regard we suggest that those patients who are interested in I3C as an adjunct treatment for RRP become part of a clinical trial. For those who are unable to participate in an I3C trial, but who would like to pursue this therapy on their own, we have been providing information regarding how and where to get I3C and how much to take. In addition, we continue to supply urine analysis testing information and supplies to RRP patients upon request. Thus far we have had requests for and have mailed out approximately 95 test kits. Along with the kits detailed instructions are included for collecting urine samples and sending them to Strang Cancer Prevention Center for analysis. In this regard we ask for your patience. These analyses are being performed as part of a research program by a limited number of scientists who depend on various funding sources to cover laboratory expenses. The RRPF will continue to assist their efforts.

How to get I3C or DIM and how much to take
Indolplex TM products containing DIM are available from:

BioResponse
L.L.C. at P.O. Box 288
Boulder, CO 80306
Email at zeligsmd@sni.net
303-447-3841 - Telephone; 303-938-8003 - Fax

Indolplex is available in two forms:

Special Note: Unlike I3C, Indolplex does not require activation by stomach acid. Indolplex can be taken by individuals who use antacids or H2 blockers like Zantac.

Estimated dosages &emdash; BioResponse has recommended that individuals with RRP choose a daily dose which is close to 4 mg/kg/day. To be close to 4 mg/kg/day a typical man weighing 70-85 kg (where kg. = 2.2 lbs.) would take from 300 to 375 mg per day. A typical woman weighing 60-70 kg would take from 225 to 300 mg per day. The dose of "Sprinkles" can be individualized with each quarter teaspoon being appropriate for each 16 kg of body weight (approximately 35 pounds).
(Please consult your doctor, especially for young children.)

THERANATURALS Inc.
PO. Box 344
Orem UT 84059-0344
(801)224-8893 - Telephone; (801) 226-6064 - Fax
e-mail: www.theranaturals.com
[A credit card number is requested by phone, fax or e-mail]

Theranaturals is selling I3C in capsule form, each capsule will be guaranteed to contain 100 milligrams of I3C. Each bottle will contain 100 capsules.
Pricing as of 12-1-97 (which includes shipping via USPS priority mail) : $40.00 for one bottle; $110.00 for a package of 3 bottles
add $16.00 to above prices for Fed X shipping.
Important: For this pricing you must let Theranaturals know that you are an RRP patient/family and they will assign you a special customer number.

Approximate dosing information is based on preliminary results of Dr. Leon Bradlow's estrogen metabolism studies, as follows:
Estimated dosages - Adults approx. 400 mg, Children (under 50 lbs.) 100 - 200 mg (Please consult your doctor)

The digestive process is important to properly break down I3C (see RRP Newsletter - Spring 94 ). In this regard, try to avoid taking antacids and it is probably best to take I3C at meal time. It has also been suggested that taking ascorbic acid (vitamin C) along with I3C will produce ascorbigen, which some investigators (Preobrazhenskaya, et al., 1993, Food Chemistry, 48,48-52) speculate may be an even more important anti-carcinogen than I3C.

If you do not appear to be responding to I3C, you might want to give DIM or bis(3-indolyl)methane (B3IM) a try. DIM or B3IM is one of the key reactive by-products of I3C. It can be ordered as Indolplex (from BioResponse) or in pure crystal form through Theranaturals by asking specifically for the B3IM CAPS.

Finally, no matter what product one is using the best way to extend the shelf life is to keep them in a cool dark location such as the refrigerator.

…................................................................................

It has recently been brought to the attention of the RRPF, that taking I3C ( or DIM) could possibly have an effect on bone density. An infectious disease specialist, Dr. Juan Dumois, has noted that a ten year old girl with RRP who has been treated with a fairly high dose of I3C since late 1996, has shown unusually low bone density for a girl her age. There is evidence that a shift in estrogen metabolism might impact bone density. In this regard, almost all published literature involves post menopausal women and osteoporosis (e.g. , see Lim et al., 1997).

Please do NOT interpret this communication as a recommendation by the RRPF to discontinue use of I3C or DIM, we are merely sharing information with the rest of the RRP community. I personally have no intention of stopping I3C/DIM for my daughter Lindsay. It is my strong opinion, that if I3C/DIM is helping control RRP, it would be a mistake to stop taking it. No one taking I3C has reported to the RRPF that they seem to fracture bones more easily, and the case of the 10 year old girl above is just that &emdash; a single case study. Further research studies into better understanding the relationship between estrogen metabolites and bone density are needed to help clarify just how much impact I3C may have on bone density.

What should people do at this time? Do not exceed recommended dosing. It also makes sense to include in your diet sources of vitamin D and calcium. Discuss this information with your doctor.

A simple bone density test is widely available called DEXA (for Dual X-Ray Absorptiometry machine that is used). It does involve a very low dose of radiation. Whether to have this test done or not, should be the topic of discussion with your doctor.

The following websites provide more information on bone density and testing:

http://www.bone-density.com

http://www.osteorec.com/testing.htm

Dr. Zeligs of BioResponse, developer of Indolplex, containing bioavailable diindolymethane (DIM), is seeking individuals to complete a confidential questionnaire. Any individual who has purchased and used Indolplex for four consecutive months will be given a free bottle of Indolplex 150 mg capsules or Chocolate Sprinkles upon completion of the questionnaire. For more information, contact BioResponse at zeligsmd@sni.net or by phone at 303-447-3841 or fax at 303-938-8003.

Some individuals have been using Indolplex for approximately seven months with reports of good control (according to BioResponse) of RRP. The following are updates for the optimal use of Indolplex.

The BioResponse staff thanks all those individuals who have added Indolplex to their routine of dietary supplementation. It was our hope that Indolplex would offer an alternative to those with RRP who have failed to respond to I3C. This has proved true in several cases. One example is a special little girl named Ashlyn who showed no response to I3C. After enduring a tracheostomy and frequent surgeries, improvement was noted following use of Indolplex. We look forward to your comments to help continue our efforts to improve dietary indole supplementation in RRP.

For background information and prior discussion of Photo Dynamic Therapy, see the RRP Newsletter Fall 1996, Spring 1997 and Spring 1998.

The Department of Otolaryngology at Long Island Jewish Medical Center is continuing its studies on the use of Photo Dynamic Therapy with the new drug MTHPC. Dr. Bettie Steinberg from LIJ notes that 4 of 8 patients having PDT treatment using mTHPC now appear to be in remission and the others have shown significant disease improvement. It seems to take about 6 months following the treatment to see the effect.

LIJ continues to actively recruite patients with moderate to severe disease (requiring at least 3 prior surgeries in the past year) for this study. Interested patients should contact either:

Dr. Allan Abramson or Dr. Mark Shikowitz
Department of Otolaryngology
Long Island Jewish Medical Center
New Hyde Park, NY 11040
718-470-7550

Research Activities Update

 [Listed below is an abstract of a topic that will be presented at the upcoming International Papillomavirus Conference by Bill Stern, a Founder, Director and Treasurer of the RRP.]

 Characteristics and Analyses of a Database of Recurrent Respiratory Papillomatosis Patients

The gathering and accumulation of information from recurrent respiratory papillomatosis (RRP) patients, has been a major function of the RRP Foundation (RRPF) since its inception in 1992. RRP patients are found primarily through otolaryngologists and clinical nurses, who are asked to complete a simple practitioner questionnaire that requests basic statistics about RRP population in their practices. Based on practitioner responses, (more comprehensive) follow-up surveys are then sent out for completion by RRP patients or parents of patients. In the last few years, the internet has become a significant factor for RRP patient and practitioner contacts and data acquisition. Information from completed surveys is then entered into the RRPF patient database.

This database includes information about family and birth history as well as other epidemiological data, such as, affected sites and treatment histories. Some selected studies involving database information include: identification of mothers whose babies are at relatively high risk of developing RRP; analyses of surgical frequency as a function of diagnosis age and statistics regarding the efficacy of adjunct treatments for RRP.

 [The latter two analyses can be found on page 5.]

RRP Perspective

[Vivian and Joe Vasquez sent the following recipe to us. They say that by making this "cruciferous stew" a major part of their diet, the time between Joe's surgeries has lengthened significantly. At age 82 Joe is one of the oldest RRP patients in our network.]

This recipe is for two people. Heat a large iron skillet and put in 1/4 cup of extra virgin olive oil. Add a very large carrot - sliced about 1/4" thick. Cover and cook on medium heat, while preparing the following:
Broccoli (stems & flowers, stems peeled) - at least 1 cup
Cabbage (sliced) or cauliflower or both - 1 cup
Bok Choy (leaves & root, sliced) - at least 1 cup
1/2 green bell pepper (chopped)
Fresh bean sprouts - 1 cup
Zucchini or eggplant (chopped) - 1 cup
(Optional) 1 white potato (chopped)
(Optional) 1 large celery stalk (sliced 1/4" thick)

Add vegetables to skillet that take longest to cook first, while preparing the others. When all are in the pan, pour soy sauce over them to taste. Put the lid on and cook a few minutes, stirring occasionally. Taste to if it is done to your liking, we tend to like the vegetables to be crisp.

We have found that we do not even desire meat with this meal. Believe it or not, our dogs won't eat their meal without some of ours; they pester us until the get it.

Good eating and great health!

Patient Profile

 [The following profile was written by RRP Patient Stephanie Bodner]

I was diagnosed with RRP in 1975 by Dr. Stolove of Hollywood when I was two years old. My mother noticed as I would cry that there was a visible growth on my uvula and decided to take me to the doctor. The doctor confirmed that I had RRP and I had my first surgery. At first, I thought it was fun, I got all the ice cream, popsicles and toys I wanted as well as all the attention. But soon after, I was having these surgeries every three to six months and it was no longer fun. The disease became a black cloud which constantly followed me. I had to go for checkups every three months which I dreaded because I always knew surgery was to follow. The day would finally come and the ritual would begin; wake up at six to be at the hospital by seven, check in and be assigned to a room, soon after, the big bad nurse would come in with the IV kit and administer it in my hand. I developed quite a fear of needles by then and always made my mom hold my hand while the nurse put the IV in. I squeezed her hand and in a couple of minutes the IV was in and a preoperative shot would be administered into the IV tube to relax me for the surgery. Shortly thereafter I would get sleepy and the nurses would come back to wheel me into the operating room. The next thing I remember was waking up in the recovery room with this funny, annoying tube in my nose. I remember having a bad sore throat, being very groggy and feeling nauseous from the anesthesia. I was not allowed to talk since talking caused scar tissue to form and would strain the muscles affected by the surgery. I would then be wheeled back into my room where my mom was waiting and stay for a while to allow the anesthesia to wear off, then I would be discharged to go home only to repeat the whole process again in a few months. I was a patient in the hospital so many times that the nurses began to recognize me and I them. This scenario continued until I was seven then it just stopped, I was finally free of the disease we thought, but it returned again when I turned fourteen. The disease came back strong as ever and the whole process began again. Luckily, I had a very good surgeon, Dr. Maliner, who had treated me since I was fourteen. This time it continued until just three years ago when, once again, it went into remission. I have had 25 throat surgeries to date and I can’t begin to tell you what a relief it is to not have to go through those surgeries any more. I literally had to schedule my life around these episodes, missing school for surgeries as well as checkups. It not only took a toll on my life but on my parents as well. Imagine having your child go through a disease like this and not being able to do anything to stop it. The medical bills are another story, all I can say is thank God for insurance. Although I no longer require surgery at this time, I still have to go for regular checkups and will probably have to do so for the rest of my life. I will always have the black cloud over my head which can come back at any time. Still, I was one of the lucky victims in that I did not have the most aggressive form of the disease, but nevertheless, it is quite a great deal for anyone to endure. I have also been lucky in that I have almost full use of my vocal chords due to minimal amounts of scar tissue thanks to a great surgeon, although there are some victims who have lost the use of their voice from the surgeries. I wish a cure for everyone suffering from RRP.

[Wendy Bodner-Stephanie's Mom added the following]

 Stephanie is 25 years old, now working full time as a credit and collections administrator for a publicly traded company and attends community college at night. She should have her two year degree in accounting and business administration in May 1998.

In Memory of Stephen Wright   Since 1980 Stephen Wright endured over 100 surgeries for RRP. Although his disease was quite aggressive for an adult, it is remarkable what he was able to accomplish. Despite severe voice loss, Stephen progressed in his career to become president and chief operating officer of a significant, privately held computer software company, regularly giving speeches to large audiences, often with the aid of a strong microphone. Stephen allowed his case history to be published in the Fall 93 issue of the RRP Newsletter. In that article he conveyed his strong desire of not letting RRP interfere with family relationships. Stephen felt it was most important not to become withdrawn and hesitant to use your voice. "Your voice quality doesn’t matter to your kids, what’s important is that you be their parent." He is survived by his wife Pauline, son Alex and daughter Elizabeth.