RRP_Q-A_posts

Welcome to the RRPF question and answer archives for RRP related issues.

!!! For new posts go to the interactive RRPF question and answer posting board !!!

Posted on Apr 16, 1999

Name: Susan Bates

email: esbates@hotmail.com

Comments: RRP and Cortisone

Here's an "anecdote" to add to your file on the use of cortisone in relation to RRP. My last surgery was Dec. 31, 1998 approximately 5 months after previous surgery, as usual. It's been running 5-7 months between surgeries for about 3 years or more. I have not used any type of cortisone for 3 years. Two weeks after my Dec. surgery, I needed to go on prednisone tablets for an asthma flare up. At that point I had my post-op vocal cord check up - everything looked smooth and clear according to my otolaryngologist's scoping. For the next 6 weeks (through this week - last week in March) it was necessary to keep taking varying doses of prednisone daily ( 40 mg tapering down to ten and then up and down several times. My papilloma has exacerbated to my needing surgery again, after less than 3 months, instead of the usual 5-7. Surgery is scheduled for next Monday. Though I realize how unpredictable the disease can be, only too well, it appears, at least in my case, that possibly the drug suppresses my immune system and allows the virus to take off. It is a highly suspicious situation, in my book!

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Posted on Apr 07, 1999

Name: Kris Heitkemper

email: leia@bright.net

Question: Pullmonary papillomas and complications - update

Addendum from a previous entry dated March 18,1999 re: Leia's pulmonary condition. Last week, a high resonance CT scan revealed "normal" results. Leia continues requiring the same intense monitoring and oxygen needs, as well as many aerosol treatments to maintain clear lungs (mostly diminished on the left side); continues dropping her oxygen saturations well below the safe ranges, etc. Now, I'm told that the pulmonary results suggest that she, in fact, does not have the Interstitial lung disease once believed. I remain very confused, and exhausted about the intensity of Leia's care and controversy of the diagnosis/problem. She also had papilloma surgery last week showing more growths and need to stop surgery due to her oxygen saturation drops so frequent and so low, becoming dangerous to continue. (The surgeries are to maintain airway patency the past couple or few years). Is there anyone who can please answer any questions about this? I feel I need to obtain a second opinion re: pulmonary status. I have asked around, and am coming up with a blank feeling helpless. I am willing to travel out of city/state if necessary; however, with Leia's surgeries every two weeks or so, timing is difficult.

Thanks,

Kris Heitkemper
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Posted on Apr 03, 1999

Name: Anonymous

Question: Can cesarean section delivery prevent JORRP?

I am a pregnant woman who has been treated for HPV ten years ago, then had a breakout at about 2 months into my pregnancy. These genital warts were removed by freezing by my doctor. My doctor assures me that the risk for transmitting HPV to my baby is no greater if I deliver vaginally than if I deliver by C-section. However, from the research I have done, it seems that a C-section may reduce the risks of passing HPV to my child. Does current research support this?

Comments/Answers:

(Posted on Apr 03, 1999 by Bill Stern, RRP Foundation)

There is certainly considerable debate among gynecologists and those researchers who have studied juvenile onset RRP (JORRP), over the value of performing c-sections in the case of HPV positive prospective mothers. We addressed this issue in a paper that appeared in the Pediatric Infectious Disease Journal, Shah et al., "Risk factors for juvenile onset recurrent respiratory papillomatosis", 1998:17:372-6. The full article can be accessed at: http://www.rrpf.org/rrpf/publications/JORRP_PedInfDis0598.html . In this study we retrospectively observed 6 cesarean births in 138 cases of JORRP (4.3%). Based on national averages of cesarean births over the same time periods we should have expected 27.4 cesarean births (19.9%), we found that 6 vs. 27.4 to be highly significant (P<.0001). Furthermore, We were able to make telephone contact with the mothers of three of the six JORRP cases who were born by cesarean delivery in 1987 and 1988. According to their recollection, in all three instances, cesarean delivery was performed after the labor pains had started and after the rupture of the amniotic membranes. This rarity of cesarean delivery in JORRP cases is indirect evidence that the cases may be preventable by planned cesarean delivery. In this study it was also found that the highest risk group were mothers presenting condylomas, who were under 20 years of age, delivering their first child vaginally. Finally, the need for cesarean delivery would be lessened if an effective treatment for condylomas, suitable for pregnant women, were available. Any treatment that would reduce the HPV viral burden in the genital tract during labor, or diminish fetal contact with maternal virus, would likely decrease the incidence of JORRP.

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Name: Michael Davis

email: miked@lrp.com

Question: Is RRP Contagious?

I am 31 years old and have had RRP symptoms since I was 17. Unfortunately, I had several "blind" surgical procedures prior to my diagnosis, which did not occur until last year. I would like to know whether I have any fear of transmitting this disease to my wife or my children.

Comments/Answers:

(Posted on Mar 31, 1999 by Bill Stern, RRP Foundation)

All the empirical evidence indicates that RRP is not contagious in both soicial and intimate situations. In the Fall 93 Newsletter I wrote an article about this subject, from which I have excerpted below, the full article is available from the RRPF website at

http://www.rrpf.org/rrpf/news/RRP_Newsletter_Fall93.html#contagion.

' The fact that recurrent respiratory papillomatosis (RRP) are far from household words, speaks to the non-contagion of this disease

I believe most otolaryngologists agree that RRP is non-contagious in social and family settings. However, there appears to be a significant amount of concern regarding the contagiousness of this disease among many who are less knowledgeable. '

...

'The issue of contagion is further addressed by Kashima and Leventhal in a recent review article on RRP ( submitted for publication,1993). They state "...There is no documented case of RRP occurring among siblings, marital partners or family members who are constantly exposed to secretions from papillomatosis patients."

RRP is presumably acquired from genital HPV, but the "vector" of transmission appears to be one-way, as the empirical evidence provided by these experts clearly indicates. Hence, RRP is not contagious in social and family settings.'

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Posted on Mar 18, 1999

Name: Kris Heitkemper

email: leia@bright.net

Question: Pullmonary papillomas and complications

6 yr. old Leia has a specialized trach tube; bipap ventilator; oxygen at times; MRSA (methacillin-resistant staph. aureus); surgeries every 3-4 weeks (over 125 surgeries in past 5 years). About 1 1/2 yrs. ago, our Pulmonary MD ordered a CT scan of lungs and revealed "massive" papilloma growth and gave us no hope. Three months later, a repeat CT scan showed no growths of papillomas. However, every 3-6 months since, a CT scan is repeated. Leia's most recent lung diagnosis has been Interstitial lung disease; etiology unknown. (She also has trachael and bronchial malacias). Since Sept., 1998, when she had a C-line using Vancomycin for the overgrowth of MRSA , which was causing problems for surgery, she also received Tobramycin aerosols and Pulmozyme aerosols. She appeared "better" for a while; then in December, began having the same problems again, and Tobi and Pulmozyme were restarted. She has continued on the downward slide and is now 21 days on/ 7 days off of Tobi; Pulmozyme on a daily basis. She does have other meds and prn's. Her symptoms include extreme oxygen drops with minimal activity or cough and at times during respiratory treatments/puffers. She has mild fever most of the time (99-ish); bloody trach secretions frequently; mild "lacy" rash over body, mostly extremities; irritated, swollen, and friable mucosa from larynx to bronchus distally. I'm wondering what else we can do....and, does anyone else have these kinds of problems? Also, could pulmonary papillomas cause all of this? Our pulmonary MD feels she may even have a LLL blood clot and talking about a possible lung biopsy. Leia is ambulatory, mentally sharp; basically, a "medical miracle" that doesn't complain. Anyone have any input? I can be Emailed or answered here.

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Posted on Feb 24, 1999

Name: Kim McClellan

email: leekim@mindspring.com

Question: Laryngologists vs ENTs

Does anyone have any insights on the distinction between Laryngologists and ENTs?

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Posted on Feb 24, 1999

Name: Kim McClellan

email: leekim@mindspring.com

Question: PPO/HMO Restrictions

Can anyone provide information on how to battle PPO and HMO restrictions on the physicians and treatment centers that patients can use?

Comments/Answers:

(Posted on Mar 13, 1999, by RRP parent Renee Randall, meanolgirl@aol.com)

We currently have a PPO for Kim. The PPO I have lets you see an out-of-network doctor of your choice and pays up to 80% after you pay a $250 deductible for each family member. After we pay $1000 out of pocket each year they pick up 100%. So it is similar to a plan like Blue Cross.

I have had the Care First HMO before and had a real battle when we switched to it. They were insisting that we see an HMO participating physician, at a participating facility. Unfortunately Johns Hopkins did not qualify (believe it or not). In this area the only facility for specialty medicine that qualified was University of Maryland Medical Center. I got around it by doing a lot of research and talking with the HMO coordinator. I had to justify why Kim had to continue to see Dr. Kashima versus changing to a new doctor at University of Maryland. I went into the physician's experience, studies they were currently participating in, treatments available, etc. I did get them to agree to pay for Hopkins after about a month of fighting with them every day.

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Posted on Feb 18, 1999

Name: Bill Seevers

email: gsayre@cyberzane.net

Comments/Question: Interaction of medication and RRP

I've had this disease for approx. 50 years. I was referred to OSU Hosp.
where over a two year period I had approx. 6 to 8 operations. Back then they just sat you
in a chair and froze your throat so you couldn't swallow and then proceeded to pinch
off the paps with a long pair of stainless steel long nose surgical pliers and to top it
off I had to sit there and let so many students take a look, it was nothing to see 12 to 15 lined up waiting their turn.
Being young it got so I refused to go to the appointment. I hid in the woods until the
appointment time was long passed. Finally my parents gave up and I quit going.
After approx. 48 yrs. of never seeing a doctor for my papilloma, I started to have
coughing spells about two years ago and when my air way closed off a couple of times
it really scared me so I went to a Doctor here in my home town who decided to
operate (laser). which he did, but when he saw the mess down there he said he couldn't
handle it and referred me back to OSU Hospital in Columbus.
I've had three laser in 3 yrs. I'm taking 300 mg I3C daily but heres my main question: I also take a lot of other medication too which I am going to list. 1 Prevacid 30mg, 2 combivent, 3 cataflam 50mg, 4 antenolol 25mg, 5 Lipitor 25mg, 6 Procardia XL 30mg, 7Valium (5 use as needed). My heart doctor also prescibed Wellbrutin which I have not started yet. My question is, does any of this medication hurt my I3C intake or does any affect my papilloma. I think it very coincidental that the recurrence started about the time I started some of these
medications.

Comments/Answers:

(Posted on Feb 26, 1999, by Dr. Leon Bradlow, Strang Cornell Cancer Prevention Center)

Prevacid which decreases stomach acidity would certainly decrease the conversion of I3C to the active DIM and ICZ. Stomach acid is required for this conversion and prevacid decreases this activity. If this patient must take these compounds he/she should switch to DIM which does not require stoomach acid to be active. The same is true for Tums or any other drug which decreases stomach acidity.

Comments/Answers:

(Posted on Feb 23, 1999, by Dr. Karen Auborn, Dept. of Otolaryngology,
Long Island Jewish Medical Center)

I3C induces certain p450 enzymes-cyp1A1, cyp1A2 (the reason it modulates estrogen metabolism and detoxifies many carcinogens). However, it can therefore modify and inactivate certain medications. Pharmaceutical companies do test for this and the information should be available. For example, if your medications indicates you should not drink grapefruit juice, this is one of those. A person should check with their doctor, their pharmacist and possibly the PDR and inserts in their medication. Most medications are not affected but there are medications that could be inactivated.

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Posted on Mar 14, 1999

Name: Bill Stern

email: bills@rrpf.org, rrpf@aol.com

Comments: Interferon efficacy for RRP-an update

As Dr. William Bonnez indicated below, the best way to evaluate the relative efficacy of any treatment including various brands of interferon is to collect appropriate clinical data, ideally via double-blinded trials. Furthermore, a search of literature for information on neutralizing antibodies and Interferon use ( a detailed list of references will be forthcoming soon), indicates that the extent to which these antibodies form in a patient may be a function of a number of factors including the type of disease being treated, the route of administration and the dosage. In addition, several studies (Itri et al., 1987; Steis et al., 1990) have indicated that the long-term effectiveness of Interferon therapy was not likely to be compromised by neutralizing antibodies. In this regard, the RRPF would like to once again state that not only is it counterproductive to condemn those dedicated RRP practitioners who might have prescribed Roferon-A instead of Intron-A, but it could be erroneous as well. As a matter of fact, I recently received an e-mail from an RRP patient who has been treated with Interferon for more than 18 years, the following is an excerpt from that e-mail indicating a greater effectiveness from Roferon-A than from Intron-A:

"... So I guess all I can say is that after many years of use of Roceron-A I did overcome the flu feelings. Didn't feel a thing with Intron-A and couldn't see it was working at all. With Roferon-A I had a lot more flu-feeling than in years. But that's hard to determine if it was because I've been more or less starting over with interferon or not. At least Roferon-A was working better than Intron-A when it came to taking care of the papilloma growth."

The RRPF is not in a position to conduct a double-blinded clinical trial, but has been collecting data regarding adjunct treatments and encourages RRP patients who have or are using Interferon to indicate the brand(s) that have been used, as you complete updated patient survey forms. To date we have information on 17 Interferon treatment regimens where we know the brands used, the breakdown is as follows: 9-Intron-A (6 claiming a partial response), 4-Roferon-A (3 claiming a partial response), 3-Wellferon (2 claiming a partial response), 1-Alferon (claiming a complete response). These numbers are still too few to draw any significant conclusions.

It would seem that if one's situation dictates interferon as the therapy of choice and a particular brand is ineffective or has become ineffective it would make sense to switch brands. To quote from Dr. Bonnez's response below, "... if in a given patient one observes there is lack of clinical efficacy, I think it would be then appropriate to try a different interferon preparation, preferably moving from a recombinant interferon to a natural interferon."

Posted on Mar 15, 1999

Name: Michael Green

email: webmaster@rrpwebsite.org

Comments: Interferon efficacy for RRP-an update

In the interests of achieving a more balanced discussion regarding Interferon (Roferon/Intron) and other questions on the RRPF website, I have asked Bill Stern if THE RRP WEBSITE might reciprocally post items of relevance here, the way the RRPF has been posting to THE RRPWEBSITE. Bill agreed.

If anyone is interested in reading THE RRP WEBSITE's postings on the Intron/Roferon issue [Irecommend this over reading a paraphrasing of those postings], please click on http://www.rrpwebsite.org/Stern1.htm.

Michael Green, MSW, ACSW
webmaster@rrpwebsite.org
THE RRP WEBSITE

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Posted on Feb 13, 1999

Name: Bill Stern

email: bills@rrpf.org, rrpf@aol.com

Question/Comments: Interferon efficacy for RRP and neutralizing antibodies

A recent posting on the RRP website suggested that there might be a substantial difference in the effectiveness of two types of Interferon. Specifically, evidence that a much higher percentage of patients (Leukemia and Hepatitis C) being treated with Roferon-A developed neutralizing antibodies than those being treated with Intron-A. Of 42 patients indicating on their RRPF surveys that they are using or have used Interferon regularly only 14 indicated which brand they were using. Of the 14 the breakdown by brands is as follows: 7-Intron-A (6 claiming a partial response), 3-Roferon-A (2 claiming a partial response), 3-Wellferon (2 claiming a partial response), 1-Alferon (claiming a complete response). These sample sizes are far too small to make any statistically significant conclusions.

I sought some additional expert insight on this issue from one of the world's leading experts on Interferon and HPV, Dr. William Bonnez. His response has been included below.

Comments/Answers:

(Posted on Feb 13, 1999, by Dr. William Bonnez, Infectious Unit, University of Rochester Medical Center)

I agree that overall it appears that interferon alpha-2a (Roferon-A) has to
have a higher propensity to induce neutralizing antibodies than interferon
alpha-2b (Intron-A). Some work done by Roche suggests that the storage
temperature contributes to the antigenicity of Roferon-A; keeping the
preparation refrigerated being best. It should be noted that any of the
interferons, alpha, beta, or gamma, can induce the formation of neutralizing
antibodies. By and large this antigenicity phenomenon is not well
understood. For example, interferons alpha-2a and alpha-2b differ only by
one amino-acid, something that does not seem to provide a sufficient
explanation.
 These neutralizing antibodies appear to have an adverse effect on in
vivo interferon activity. Several reports have indicated that the presence
of interferon neutralizing antibodies was associated with treatment failure
(e.g., multiple sclerosis and interferon beta, hepatitis C and interferon
alpha,...) and that the administration of a different interferon, typically
a natural interferon alpha, could overcome treatment resistance (this has
been shown in the case of hepatitis C). Natural interferons alpha are
constituted by several species of interferon molecules. Antibodies directed
to one species, e.g. alpha-2, do not seem to cross-react with another
species, e.g. alpha-1. This is why presumably natural alpha interferon
retain most of its efficacy.
 As you know, the clinical trials of interferon for the treatment of
RRP were done using either interferon alpha-n1 (Wellferon) of alpha-n3
(Alferon N), two natural interferons. I was have been involved in the only
three studies that have looked comparatively at the efficacy of different
interferons, either intralesionally of systemically administered, for the
treatment of genital warts (Reichman RC, Oakes D, Bonnez W, et al. Treatment
of condyloma acuminatum with three different interferons administered
 intralesionally: A double-blind, placebo-controlled trial. Ann Int Med
1988;108:675-9.; Reichman RC, Oakes D, Bonnez W, et al. Treatment of
condyloma acuminatum with three different alpha interferon preparations
administered parenterally: A double-blind, placebo-controlled trial. J
Infect Dis 1990;162:1270-6; Reichman RC, Oakes D, Bonnez W, et al. Treatment
of condyloma acuminatum with three different alpha interferon preparations
administered parenterally: A double-blind, placebo-controlled trial. J
Infect Dis 1990;162:1270-6; Bonnez W, Oakes D, Bailey-Farchione A, et al. A
randomized, double-blind, placebo-controlled trial of systemically
administered alpha-, beta-, or gamma-interferon in combination with
cryotherapy for the treatment of condyloma acuminatum. J Infect Dis
1995;171:1081-9). We did not observe any differences in efficacy, or lack
thereof, among interferon preparations. Obviously, lack of observable
differences does not mean that no differences exist, only that given the
size of the trials they could not be detected.
 Consequently, short of appropriate data and this point needs to be
emphasized, I think it is reasonable to expect that any interferon
preparation might be efficacious in the treatment of RRP. However, if in a
given patient one observes there is lack of clinical efficacy, I think it
would be then appropriate to try a different interferon preparation,
preferably moving from a recombinant interferon to a natural interferon. I
cannot make strong recommendations in favor of Intron-A versus Roferon-A
because the data are only inferential, but obviously everything being
equal, as a starting choice Intron-A might be preferred. Please note that if
the clinical trials were to be done, Roferon-A could turn out to be a more
potent interferon than Intron-A for the treatment of RRP, in spite of
neutralizing antibodies. We simply do not know.

William Bonnez, M.D.
Infectious Diseases Unit
University of Rochester Medical Center

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Posted on Feb 1, 1999

Name: Sharon Davies

email: Julian.Davies@virgin.net

Question: Stopping Interferon

I have a 5 year old daughter(Ashleigh). She was diagnosed with the rrp virus when she was 18 months old. Over the years her surgeries have fluctuated between 12 week intervals down to 4 week intervals. At times she needs to be intubated to alow the swelling time to reduce. At the moment she has surgery every 6 weeks. She has been on Interferon for 6 months and Indoplex for 2 months.Her consultant suggested to us that we try Interferon to reduce her chances of having to be trached. However I feel that after 6 months of use it is showing no real signs of controlling her rrp. O.k she hasn't got a trach. But her surgeries are still frequent. I would like to stop the Inter today but my main concern is it could have a rebound effect and flare up worse than ever before. Please could I have opinions on this.

Comments/Answers:

(Posted on Feb 8, 1999, by Jerome Thompson, MD, Dept. of Otolaryngology, University of Tennessee)

I have seen a wide response profile to interferon. Some respond and others don't. I still feel that everyone deserves several prolonged courses of the drug.

Comments/Answers:

(Posted on Feb 3, 1999, by Bettie Steinberg, PhD., Dept. of Otolaryngology, Long Island Jewish Med. Ctr.)

We did an interferon study many years ago, where we adjusted the dose to the individual patient. There were small (110 lb) women who needed a higher dose than a large man, even though we were suppossed to be correcting for body size. She might talk to her doctor about increasing the dose for a limited period (several weeks) to see if there is improvement. Removing interferon does result in return of the disease as it was before therapy in many patients who respond to interferon. Maybe one of the clinicians knows whether it will get worse in someone who is not obviously responding.

Comments/Answers:

(Posted on Feb 1, 1999, by Bill Stern, RRP Foundation)

I am not an expert on Interferon . However, based on literature that I have read and discussions with other RRP patients/parents, it seems that Interferon usually has an impact within 6 months of starting it and often sooner. I am assuming that Ashleigh' physician is following a protocol that has proven efficacy based on published results (e.g., the protocol that Kashima and others at Johns Hopkins recommends is written up in Leventhal et al., 1991). If indeed this is the case, and if Ashleigh were my daughter, I would get her off Interferon - but I would do it gradually in consultation with an expert, so as to minimize any possibility of a "rebound" effect.

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Posted on Feb 1, 1999

Name: Renee

Question: Puberty and Interferon Side-Effects

Have any parents or adults who had juvinile onset disease, noticed any changes in the Inteferon side-effects during puberty? My 12 year old daughter, who is going through puberty now, is having very high fevers again, even though she hasn't had that type of side-effect in over a year. Her blood work has been checked for toxicity and they say things look fine, and her fever is coming down with Tylonal. She also says that she really doesn't feel "bad" with the fever and has no other sign that this may be a virus. The doctor's secretary mentioned to us that they are not sure at this time how the hormonal changes during puberty may effect the Interferon treatment she is on, but that was something they were looking into. I am curious to find out if anyone else has noticed the same type of changes at this age.

Comments/Answers:

(Posted on Feb 8, 1999, by Jerome Thompson, MD, Dept. of Otolaryngology, University of Tennessee)

The fevers are the most common problem with interferon and can be very bothersome. I have not heard of a particular problem with puberty.

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Posted on Jan 18, 1999

Name: Kim

email: leekim@mindspring.com

Question: RRP and hormones

I have had active disease since the age of five. I am now 32 years old. I am trach dependent (seven years) mostly because of the scarring, web, and that I mentally could not handle surgery every two-four weeks any longer. I have just recently been diagnosed ( after several tests) with PCO (polycystic ovarian syndrome). This has been a slow onset of symptoms, but it is prevelant in my family. Could it be possible that the hormone imbalances could be affecting the RRP? i.e. growth rate, inability to react to I3C, etc... If I decide to treat the PCO with hormone therapy, what could be the ramifications to the RRP?

Comments/Answers:

(Posted on Jan. 24, by Richard Smith, MD, Pediatric Otolaryngology, Univ. of Iowa )

I doubt anyone knows for sure. Since she has had problems with her disease since age 5, and presumably had regular periods for many years following menarche (during which time she also had problems with fluctuating RRP), I don't think it would make a difference to her disease if she starts on hormone replacement. If it does change her disease, I would guess that it would make it improve. If I were her, I would get the trach out....OUT.....OUT!!!!!

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Posted on Jan 12, 1999

Name: Anonymous

Question: RRP flare-ups during puberty

I am aware that hormonal changes during pregancy can cause RRP flare ups. Have physicians noticed significant changes or flare ups of RRP during puberty or before a female child starts to mentrate? My child is just reaching this age and keeps having almost spontaneous flare ups, where one week she is fine and the next she is horrible. Please let me know if the physicians or any other parent has noticed this kind of change.

Comments/Answers:

(Posted on Jan. 13, by Russell A. Faust, PhD, MD, Pediatric Otolaryngology,Johns Hopkins )

I appreciate the question: This is an astute observation by a parent, and very insightful, to make the connection between the hormonal lability of pregancy and that of adolescence. In short, I do not have an answer. To date, I am unaware of anyone publishing any papers on this correlation. Furthermore, since the vast majority of RRP patients that I have been involved with are infants or toddlers, I have no real experience with either the adult of even the adolescent RRP patient population. Sorry this is of no help. I am eager to see whether anyone knows more on the topic - very interesting.

Comments/Answers:

(Posted on Jan. 13, by Bill Stern, RRP Foundation)

Based on anecdotal reports from RRP parents, it seems that puberty may act more to supress RRP rather than cause it to become more aggressive. However, in many cases it does not appear to have much impact on the disease. There is certainly considerable evidence that shifts in estrogen metabolism may affect RRP, but unless we know exactly how puberty is affecting the ratio of estrogen metabolites in your child it is very hard to blame puberty for the behavior of RRP in your child. You need to consider any adjunct therapies your child may be following (such as I3C) and whether there are any obvious immune system variables at play as well.

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Posted on Dec 21, 1998

Name: Stacy

Question: RRP Doctors in Salt Lake City, UT

I was told that Bill Stern may be able to give me the names of some "good" doctors for RRP in Salt Lake City, Utah. (for an adult) Please help if you can.

Thank You!

Comments/Answers:

(Posted on Dec. 22, 1998, by Bill Stern, RRP Foundation)

The Department of Otolaryngology at the University of Utah Medical Center, located in Salt Lake City does have significant experience treating RRP patients. There are two doctors from this department who are registered in the RRP Foundation database, they are:

Steven Gray, MD and R. Kim Davis, MD - (801) 588-3983

I hope this information is helpful.

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Posted on Dec 8, 1998

Name: Anonymous

Question: Use of Microscissors vs. Laser

I was surprised to find out that my doctor excised a papilloma on my vocal cord using "microscissors" instead of a CO2 laser. Does anyone have any comment about the relative merits of these 2 surgical techniques, especially with respect to scarring and papilloma spread?

Comments/Answers:

(Posted on Dec. 21, 1998, by Russell Faust, PhD, MD; Pediatric Otolaryngology,Johns Hopkins )

There are many ways to surgically address RRP, including "microscissors", CO2 laser, other lasers, cautery, and the new, so-called "shavers", which use a small rotating blade inside a hollow tube to slice off papillomas. All have their unique advantages and disadvantages. All of these methods are entirely legitimate, with none clearly having greater merit than the others. In addition to the obvious goal of removing papillomas, minimizing the amount of scar that forms as a result is an additional, important goal, since RRP seems to preferentially grow at the interface between normal respiratory epithelium and scar (Dr. Kashima's studies from Johns Hopkins). Whatever method(s) that your surgeons employs that achieves these goals is the proper method.

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Posted on Dec 8, 1998

Name: Ashley

Question:

My 6 year old daughter Laken has had this disease since she was 10 months old. She had a tracheostomy on her 2nd birthday, and she still does. She has surgery every 2 weeks and her doctor told me this week that she has them in her lungs. Is there any kind of new medicine that can help to slow the growths down. She has been on Interferon for the last 4 years.

Comments/Answers:

(Posted on Dec. 8, 1998, by Bill Stern)

Sorry to hear that Laken has been diagnosed with pulmonary papilloma.

In the Fall 97 issue of the RRP Newsletter http://www.rrpf.org/rrpf/news/RRP_Newsletter_Fall97.html we included a short article indicating the frustration of treating and dealing with pullmonary papillomas. In this article, we did note that Dr. Frank Rimell at the Univ. of Minn. has been trying a protocol involving a combination of potent drugs. I cannot endorse this combination of potentially toxic drugs, but if you want more information you can call Dr. Rimell's office at: (612) 626-0486.

Unfortunately, I don't know of any great new breakthrough in treating pulmonary papilloma. I assume you have already tried I3C. there is also the I3C derivative product Indolplex (see the latest newsletter orthe RRPF website for more info.) I am posting your question in hopes that a doctor or researcher visiting this website will share any new info. on papilloma in the lungs they might have.

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Posted on Dec 2, 1998

Name: Paul Kmiecik

email: pkmiecik@aol.com

Question:

In lieu of taking the Indole-3-Carbinol/I3C capsules, how much cabbage, broccoli or cauliflower can be eaten daily? Also, if these vegetables are juiced how much should be taken/drunk daily. Please provide amounts for audults as well as children.

Comments/Answers:

(Posted on Dec. 3, 1998, by Bill Stern)

My answer to your question regarding cruciferous vegetables as sources for I3C is based on some articles which are included in past RRP Newslletter issues. The bottom line is that one can get an estimate of an average amount of I3C per unit mass of cruciferous vegetable, however, the variability is quite large and unpredictable. So if an RRP patient chooses to use cruciferous vegetables as their sole source of I3C, it is clearly on a user beware basis.

>From the 93 Fall RRP Newsletter -
(http://www.rrpf.org/rrpf/news/RRP_Newsletter_Fall93.html)
"Treatment Protocols and Cabbage Juice Recipes"

.... (From an LIJ protocol)In order for adult subjects to obtain a
clinically effective dose of indole-3-carbinol, they need to consume
about a pound of cabbage a day (yields 8 ounces of juices). Children
need about half a pound (yields about 4 ounces of juice). These amounts
are for green cabbage, which appears to be the best source of
indole-3-carbinol (It is claimed that green Savoy cabbage may contain
more indole-3-carbinol than other cabbages -
Bradlow, 1993, private communication)...

>From the 94 Spring RRP Newsletter -
(http://www.rrpf.org/rrpf/news/RRP_Newsletter_Spring94.html)
"Indole-3-Carbinol / Crucif. Vegetable Study":

.... the reliance on human consumption of large quantities of
cruciferous vegetables as a source of I3C, appears to introduce a
variable that is at best difficult to quantify. Even if those patients
enrolled in the study religiously comply with the consumption
requirements as outlined in the LIJ protocol, there appears to be a
great variability of the amount of I3C contained in the vegetables
themselves. Not only is there significant variation of I3C from one
cruciferous species to another (with savoy cabbage and purple
broccoli having higher amounts of I3C), but more importantly there
is great variability of I3C from plant to plant within a species. For
example I3C typically ranges from 4.5 mg / 100 g to 97 mg / 100 g
for green cabbage ( Dr. Leon Bradlow, personal communication ).
Therefore it is possible for an adult who is following the LIJ
protocol, by consuming approx. 1 pound of cabbage (or the juice
therefrom) a day, to be getting anywhere from 20 mg to 440 mg of
I3C per day!...

-------------------------------------

Posted on Nov 16, 1998

Name: Anonymous

Question:

I have an 18 month old son that has small bumps/lesions (probably 3-5mm) on the top/back of his soft palate. I noticed these when he was crying. Could this be growths/tumors due to HPV? He does not have any hoarseness or other signs that I've read about and seems perfectly healthy otherwise. I, the mother, have a history of HPV. When I was pregnant I had one growth on the outside; I have not ever been diagnosed with having it on the inside or on the cervix.

Comments/Answers:

(Posted on Nov. 18, 1998, by Bill Stern)

Again I begin my response with a caveat - I am not a medical professional. I have a daughter who has RRP and I have spoken with many parents of children with RRP as director of the RRP Foundation.

The bumps/lesions you see on your son's soft palate could be papilloma, you should see a doctor (preferably an otolaryngologist) for a definitive diagnosis. Since these growths are far above the vocal cords, I wouldn't expect them to affect his voice. If they are HPV, they could affect the larynx in the future which could cause hoarseness.

-------------------------------------

Posted on Nov 11, 1998

Name: Anonymous

Question:

My son is six months old. He has had some hoarsness for the pastmonth, which has not really worsened, but perhaps gotten a bit better. His cry now sounds normal(was also hoarse the firstweek), but when he tries to make soft sounds, nothing comes out but a whisper. He can make loud sounds without a problem. He also started coughing at about the same time. He has been to his pediatrician twice for this problem, which she tells me is probably just a cold, however he has no other symptoms and is not fussy. She also told me that his voice sounded fine to her, but she doesn't know what it sounded like before.The hoarseness also gets worse after he cries and after he's been out in the cold. I informed her that I had a history of cervical HPV(five years ago) and that I was worried he may have papillomatosis, she told me that I was worrying too much and said that would be like fearing cancer if I had a stomach ache. But still, I am very worried. He also was diagnosed with severe reflux when he was less than one month old, which he still has. I am hoping that the hoarseness is from laryngeal pharyngeal reflux, rather than papilloma (but my doctor made no mention of this). I highly doubt that it is a cold.

So these are my questions. Do you think that I am worrying too much, or are these the signs that I should be looking for? Also, how likely do you think it is that the hoarseness is being caused from reflux and not papilloma?

Comments/Answers:

(Posted on Nov. 11, 1998, by Bill Stern)

Let me begin my response with a caveat - I am not a medical professional. I have a daughter who has RRP and I have spoken with many parents of children with RRP as director of the RRP Foundation.

It is my opinion that, although possible, your child is probably not displaying symptoms of RRP. Reflux can certainly irritate the larynx, so possibly could be the explanation here. I would expect if it were RRP, left untreated, nighttime breathing problems would likely develop, i.e., when your son is sleeping on his back at night he might snore loudly, especially on inspiration rather than exhaling - eventually showing respiratory distress. However, if you are going to be very anxious and want to get a more definitive diagnosis you should see an otolaryngologist.

(Posted on Nov. 11, 1998, by Frank Rimell, MD, Univ. of Minn. )

Insist on a referral to a qualified otolaryngologist in your area. A flexible laryngoscopy can be done in the office easily. An otolaryngologist experienced in pediatric problems can easily solve this issue.

(Posted on Nov. 11, 1998, by Keerti Shah, MD, Johns Hopkins )

It seems a visit to an otolaryngologist should answer your concerns.

-------------------------------------

Posted on Nov 1, 1998

Name: Anton Young

email: AntonYoung@bigpond.com

Question/Comments:

I am a 34 Y.O. Australia male. I have had RRP since I was 21 Y.o. I would like to make contact with other RRP patients in Australia particularly or overseas to explore the opportunity of starting a support group in Australia. My contact details are Mailing address - 4/14 Hilda St. Hamilton Brisabne Queensland 4007. My email is Antonyoung@bigpond.com My phone / fax No. is 07 3216 4048.I hope to hear from you. Regards Anton Young

-------------------------------------

Posted on Oct 12, 1998

Name: Anonymous

Question:

My son's energy level seems to be going down the last twelve weeks...he has had two surgeries but where he was very active in sports he tires easily and is not wanting to play. His Dr. says that the pap is not worse ...at least what they can see during surgery. Sam also started takingthe sprinkles at the same time. Any advice?

Comments:

(Posted on Oct. 13, 1998, by Bill Stern)

I have not heard of anyone claiming a loss of energy as a result of taking I3C or Indolplex. I am assuming that you are following the recommended dosing for the Indolplex sprinkles.

-------------------------------------

Posted on Oct 11, 1998

Name: Bill Davidson

email: davidson@sierra.net

Question:

A month ago I had surgery on my vocal cords. Going into this the diagnosis was that I had scaring and/or callousing on my vocal cords due to acid reflux and/or sever caughing. I had waited about one and a half years from the first symptoms hoping that the 'callous ' would just go away. But it didn't; the symptoms got worse. The surgeon and I were both surprised to find warts (laryngeal papillomas). At first I thought, so what, I've had warts on my hands and they just went away by themselves. Then my surgeon told me that I should plan on additional surgeries every 8 weeks or so for the next year in order to get rid of any warts that may come back. I thought that was pretty bad until I started reading some of the cases on this web page. Now I understand that some people have had this disease for 20 years or more and they have had 20 or 50 surgeries! I'm pretty upset and scared by all this. Can someone tell me, how likely is it that 6 surgeries over the next year will cure this disease for me? About what percentage of cases does this disease continue for several years?

Are there identifiable risk factors that would indicate the likelihood of this disease being a mulit year situation? I'm just trying to get a handle on the potential magnitude this is going to have on my life. Thank you very much for you time in answering my questions.

Bill Davidson

-------------------------------------

Posted on Oct 1, 1998 at 21:37

Name: Gerald

email: karsenau@soleil.acomp.usf.edu

Question:

Thanks for your response regarding my voice quality. Is there a tape(s) that may have voice training, or follow along type sounds to help me with vocal cord flexibility? I would think that one of the many clinics in the country would have one. I spend a greast deal of time in my car during the day and this might be a great idea while travelling on business.

-------------------------------------

Posted on Sep 29, 1998 at 00:27

Name: Teresa

email:

Question:

My daughter Ashlyn, 3y.o., began taking DIM/Indolplex on June 29, this year. We obtained the urine sample cups and took a sample the day before she began as well as a month after she began and have it frozen. Our doctor has been trying to find out where they should send these samples to provide research data for someone... can someone let us know where to send these samples, whether we should take a more current urine sample, and who to call if he has any questions?

Answers/Comments:

(Posted on Sep. 29, 1998, by Bill Stern

If your doctor recieved the urine specimen sample kit through the RRP Foundation, there should have been detailed instructions included. In case the instructions were lost or by some oversight not included here are the shipping instructions:

Send specimens via overnight delivery for the next morning (Fed Ex, etc...), do not arrange for them to arrive on Friday, Saturday, Sunday or Monday. The best days for arrival are Wednesday and Thursday (i.e., shipping on Tuesday or Wednesday).

Specimens must be shipped with dry ice or a frozen blue ice bag and clearly marked: DELIVER IMMEDIATELY FROZEN MATERIAL.

Please notify Bill Stern (609-452-6545 or 609-530-1443 and Dr. Leon Bradlow at least 2 days before expected arrival date of the shipment (i.e., at least a day before your expect to send it).

Send Urine Specimens to:

H.L. Bradlow, Ph.D. or D.W. Sepkovic, Ph.D.

CUMC Room A-157

1300 York Ave.

New York, NY 10021

Dr. Leon Bradlow's phone # is: (212) 746-5431

-------------------------------------

Posted on Sep 28, 1998 at 16:45

Name: Shanda Bridges

email: Shanda@olive-branch.com

Question:

Is there any way for my seven-year-old to be alternatively examined instead of rhinoscopy? I have been advised that his doctor should be able to go through his mouth or at least do the rhinoscopy without causing him as much trauma as he had before.

Answers/Comments:

(Posted on Sep. 29, 1998, by Bill Stern for Haskins Kashima, MD, based on telephone discussion)

Although this does not directly answer your question, it is important to communicate your concerns to your attending otolaryngologist. Your doctor may propose a viable alternative.

-------------------------------------

Posted on Sep 28, 1998 at 16:45

Name: Dorothy McDonald

email: jimdor@cnwl.igs.net

Question:

I have had RRP for 6 years, and am 56 years old. I have had 50 surgeries, and tried all the medications (interferon, ribavarin, accutane, acyclovir, 13C and DIM) with no results. In January they found cancer in my trachea. They decided to use radiation and I was in intensive care for 2 weeks, intubated because they thought the swelling from the radiation might cause breathing problems. After the first 2 weeks they took the breathing tube out and I was given 2 more weeks of radiation. They took a cat scan in April and found out that not only was the cancer gone but the papillomas in the trachea and the vocal cord area were gone also. There were still some papillomas in my lungs but at that time they looked ok. In August they did another cat scan and found a large mass in my right lung. After 2 biopsies they have found cancer cells there. At this time I am awaiting an MRI so they can see how much of the mass is cancer. I had a collapsed lung when they took out the breathing tube after radiation, so we are hoping some of the mass is collapsed lung, some papilloma and only a bit of cancer?? There has been a lot of damage to my lungs from abscess's, infections and pneumonia so surgery has been ruled out. They now have to decide between radiation, chemo or both. Is there anyone who has experience with this who can share knowledge with me?

-------------------------------------

Posted on Sep 10, 1998 at 17:30

Name: Anonymous

email: durant@netcom.com

Question:

We just got a diagnosis from a cardiologist of a Mitral Valve Prolapse. While I know it can be inherited (although we do not know of it in the family yet), I also know it can be brought on by drugs. I am wondering whether anyone knows of this ocurring from usage of Interferon or Accutane? I'm not interested in blaming any of our doctors but I would just like to know.

-------------------------------------

Posted on Aug 31, 1998 at 20:02

Name: Gerald Arsenault

email: karsenau@soleil,acomp.usf.edu

Question:

I have had only three surgeries but am not pleased with my voice quality. It is hoarse if I attempt to project at all. I suppose this is common for this disease. I am told by my physician/ent that it is the result of scarring. I have been in remission now for over a year and am curious about visiting a clinic to investigate if there is any success at vocal cord/ rehab, scar tissue removal?

Answers/Comments:

(Posted on Oct 13, 1998, by Michael S. Goldrich, MD, Medical Director - Hearing & Speech RWJ Univ. Hospital, Voice Center of New Jersey )

Voice quality is variable after laser excision of papilloma (I assume that the surgeries that you had were laser procedures). The most important variablesare the quantity of disease and the surgical technique. If there is extensivedisease, then most likely, laser vaporization and excision will leave morepersistant disease. By the same token, excessive excision, excessive depth, heat injury of surrounding tissues can all create permanent scarring which are unfortunate outcomes of a procedure that generally can be repeated many times safely. If you have not had a videostroboscopy, and if your voice is worse since surgery, this would be the first step in evaluating what is causing your change in voice (i.e. scar versus papilloma). I gather that you are in California and could certainly reccomend a voice center to you if you are not currently being treated by an Otolaryngologist who specializes in Voice.

Answers/Comments:

(Posted on Sep. 20, 1998, by Bill Stern based on telephone discussion with Haskins Kashima, MD )

A most important thing for you to do is to communicate your concerns to your attending otolaryngologist. If you feel uncomfortable doing this or are unhappy with his/her response, then you should seek a second opinion.

In any case, your surgeon should be able to recommend a voice specialist to be actively involved in dealing with your situation.

Answers/Comments:

(Posted on Sep. 20, 1998, by Bill Stern excerpted from discussions on the SID3VOICE listsever)

"Often a gentle but rigorous stretching exercise regimen is useful in reducing stiffness and scarring due to stripping as well as breath control and resonance training... Gentle glides up and down in pitch effectively lengthen the vocal folds. More strenous exercises include howling and siren sounds. " - R. Heuer

-------------------------------------

Posted on Aug 28, 1998 at 21:13

Name: Anonymous

Question:

I have heard that repeated surgeries for papilloma reduces flexibility of the vocal cords. Although the papilloma is on the surface, either the papilloma or the surgery tends to fuse the surface cells to the underlying muscle, reducing the cords ability to vibrate. Is there anything that can be done to improve vocal cord flexibility after repeated surgeries?

Answers/Comments:

(Posted on Oct 13, 1998, by Michael S. Goldrich, MD, Medical Director - Hearing & Speech RWJ Univ. Hospital, Voice Center of New Jersey )

Voice quality is variable after laser excision of papilloma (I assume that the surgeries that you had were laser procedures). The most important variables are the quantity of disease and the surgical technique. If there is extensive disease, then most likely, laser vaporization and excision will leave more persistant disease. By the same token, excessive excision, excessive depth, heat injury of surrounding tissues can all create permanent scarring which are unfortunate outcomes of a procedure that generally can be repeated many times safely. If you have not had a videostroboscopy, and if your voice is worse since surgery, this would be the first step in evaluating what is causing your change in voice (i.e. scar versus papilloma). I gather that you are in California and could certainly reccomend a voice center to you if you are not currently being treated by an Otolaryngologist who specializes in Voice.

Answers/Comments:

(Posted on Sep. 20, 1998, see answer to question by Gerald Arsenault above)

-------------------------------------

Posted on Aug 13, 1998 at 17:15

Name: Mary Ann Kackley

email: MAKackley@aol.com

Question:

I'm experiencing a side problem from my surgeries that possibly someone could point me in the right direction for information. For about the past 8 months, my airway has become very difficult to manage during intubation prior to surgery, so they've switched to using fiber-optic "awake" intubation. It is not working very well (needles in the neck, not sufficiently deadening the gag reflex, 35+ minutes to intubate resulting in swelling, pain, bleeding, etc.).

Do you know anyone with any good advice?

Answers/Comments:

(Posted on Aug 15, 1998, by Frank Rimell MD, University of Minnesota )

All our surgeries are done without intubations. Laryngeal surgery can be done for RRP without intubation. I would need to know the particulars in your case before any specific comments can be made however.

(Posted on Aug 15, 1998, by Clark A. Rosen MD, Director, Univ. of Pittsburgh Voice Center )

Without knowing your anatomy (or lack of) it is difficult to give specific advice. But I can tell you that providing anesthesia to difficult anatomic patients is extremely specialized and sophisticated if you find the right people. This is just like finding the the right surgeon, i.e. one that is extremely familiar with the problem and has lots of experience.

I would seek the assistance of an anesthesiolgist that specialized in Head and Neck surgery anesthesia.

Good Luck.

-------------------------------------

Posted on Aug 11, 1998 at 23:20

Name: Anonymous

Question:

As a followup to the cortisone and papilloma issue, I don't suppose that common cortisone nasal spray for allergies could cause any problems with aggravating RRP?

------------------------------------------------

Posted on Aug 4, 1998 at 18:35

Name : Kathy Mitchell

email: kmitc81234@aol.com

Question:

I am wondering in general if it is dangerous to have so many surgeries and is there a safer anesthesia to use repeatedly? Also, are there any studies determining long term effects?

------------------------------------------------

Posted on Aug 2, 1998 at 13:12

Name: Anonymous

Question:

Are respiratory papillomas transferable? What information is available to explain to my girlfriend?

Answers/Comments:

(Posted on Aug 4, 1998, by Bill Stern)

In the Fall 93 issue of the RRP Newsletter, I wrote an article regarding RRP contagion. The article was primarily based on information obtained from approximately 10 of the leading experts on RRP in this country. I started the article with the following opening sentence:
"The fact that recurrent respiratory papillomatosis (RRP) are far from household words, speaks to the non-contagion of this disease."
Information obtained from these experts indicated that it was an extremely rare event to ever find two members of the same family with RRP. This led me to conclude my article as follows:
"RRP is presumably acquired from genital HPV, but the "vector" of transmission appears to be one-way, as the empirical evidence provided by these experts clearly indicates. Hence, RRP is not contagious in social and family settings."

For more information on this topic see the RRP Newsletter Fall 93.

------------------------------------------------

Name : AMANDA

email: SRICE35628@ AOL. COM

Posted on Aug 2, 1998 at 13:06

I was wondering if there were any parents who did not have this disease, but their child did. Does it run through the blood stream? Has anyone died from it? Last but not least, has it ever gotten into anyone's lungs?

Answers/Comments:

(Posted on Aug 7, 1998, by Bill Stern)

As in the posting above, I refer you to the Fall 93 issue of the RRP Newsletter article regarding RRP contagion. As I stated in the reply above it is extremely rare to find a situation in which two members of the same family have RRP, this includes parents and children. However, it is likely that the birth mother of a child with RRP has genital HPV.
The HPV virus is not transmitted via the blood, it infects various epithelia, such as the larynx, and is presumably transmitted by the shedding of viral particles from one location to another that are in close contact and that accept the same HPV types. It is hypothesized that this can take place during the birth process from an HPV infected mother to child.
RRP generally has a low mortality rate. Of the 400+ RRP patients that we have followed over the last 6 years, we know of 5 deaths. The most life threatening aspect of this disease is when it invades the lungs and sometimes progresses to a carcinoma, which is quite rare but unfortunately does occur.

------------------------------------------------

Posted on Jul 26, 1998 at 21:15

Name: Anonymous

Question:

I take a range of natural products to prevent papilloma. They include I3C (estrogen metabolism), fish oil capsules (6 day, estrogen metabolism), garlic capsules (6 day, anti-viral properties) and Vitamin C (2 gram/day, immune system enhancer).

Are there any other natural products that may work in the prevention of RRP? I've heard that quercertin has anti-papilloma properties and shark cartilage as a tumor preventer seems to be getting much attention recently.

Answers/Comments:

(Posted on Aug 4, 1998, by Bill Stern)

Regarding some of the "natural " substances you mentioned above:

1. Quercertin - none of the RRP experts, who I have contacted, know much about quercertin and whether it has any anti-papilloma qualities.

2. Shark cartilage - Diane Burke from the Univ. of Iowa has reported that shark cartilage has been tried by a couple of very severe RRP patients that she knows, but it did not have any impact on their disease. She also stresses that the Dept. of Otolaryngology at the Univ. of Iowa does not endorse shark cartilage as a therapy for RRP.

A few other "natural" products that some RRP patients report using with some degree of success include:
Shaperite Immune Formula and Thuja ( a homeopathic anti-viral).

(Posted on Aug 12, 1998, by Bill Stern based on information supplied by Tom Broker, Ph.D.)

Another naturally occurring substance that might potentially be of value for RRP patients is genistein which is a phytoestrogen found in soy products.

Instead of quercertin above you are probably referring to quercetin which is widely found throughout the plant kingdom, i.e., in rinds, barks, clover blossoms and in ragweed pollen. In an article by Cairney and Campo that appeared in Carcinogenesis 1995, vol. 16 no. 8, pp. 1997-2001, it was found that in the presence of bovine papillomavirus type 4, quercetin was oncogenic. In this regard it would seem prudent to avoid this substance.

------------------------------------------------

Posted on Jul 25, 1998 at 8:07

Name: Anonymous

Question:

Having repeated papillomas makes it difficult to speak competently, in some sense. One loses control over all the important communication points of tone, inflection, emphasis and expressing a world of emotions by them, such as wonderment, joy and anger.

Subtleties in speech are important. If we try to get the volume up, it sounds angry or aggressive. If we allow a low, weak, voice, it appears that we are weak and lack self confidence.

Can anyone recommend a book about the importance of vocal control and the importance of vocal inflections in communications, in order for us papilloma patients to understand how this aspect affects our daily communications and lives?

Answers/Comments:

(Posted on Aug 4, 1998, by Bill Stern)

Although I have not been able to learn of a book dedicated to those aspects of voice of concern here, I suggest that you subscribe to an e-mail listserver dedicated to addressing voice problems. It is subscribed to by many otolaryngologists and other voice specialists. (It is free and open to the public.) Here are the instructions for subscribing:

1. Address an e-mail message to mxserver@pmsys.weeg.uiowa.edu

2). In the body of the message type:

subscribe sid3voice [firstname lastname]

quit

3. Send message.

------------------------------------------------

Posted on Jul 18, 1998 at 14:16

Name: Anonymous

Question:

I am currently on Interferon treatments at 6 MU, 3 times per week and the papillomas are generally under control, having surgery 1 per year. I've had trouble with granulomas forming after surgery. I've heard that cortisone during surgery helps prevents granulomas but also is conducive to papilloma growth. This is my dilemma and I would ask if anyone has any comments about cortisone and papillomas.

Answers/Comments:

(Posted on Jul 21, 1998, by Haskins Kashima, MD)

"Contact granuloma is a specific lesion that occurs in a characteristic location. Granulation tissue or reaction indicates TB, fungus infection, or a foreign body reaction."

[Would you use cortisone with a patient who tended to regularly form granulomas after surgery for RRP?] - "No" [Have you ever seen cortisone exaccerbate papilloma growth?] - "No"

(Posted on Jul 21, 1998, by Bettie Steinberg, PhD)

" There is a lot of antecdotal "knowledge" that cortisone makes RRP worse, but there has not been any real data based on careful studies. However, there are several pieces of information that do relate to this. First, there is a sequence in the HPV DNA that looks like the sequences that are stimulated by cortisone and related compounds. This would suggest that the virus would be stimulated, and many people assume so. This assumption is strengthened by studies where the sequence was cut out of the virus, and tested by itself - it was stimulatory. However, we and one other group tested this supposition, and found that it was not stimulatory when in the context of the whole viral DNA. So..., probably not the mechanism.

Long term use of or high doses of steriods, including cortisone, suppress the immune system. This is clearly a mechanism that would make RRP worse. However, we have used low dose steroids for a day or so after surgery when there was excessive swelling without any problems. Therefore, there is no clear cut yes/no answer to my knowledge. "

(Posted on Jul 28, 1998, by Clark A. Rosen MD, Director, Univ. of Pittsburgh Voice Center )

RE: papilloma and cortisone

The issue is probably moot since cortisone is not an appropriate treatment for granulmomas. I would rec. no laser surgery on the vocal folds especially near the arytenoid cartilages and voice rest or light voice use following the surgery (~ 5-7 days) Granulomas form from irritation of the larynx, they are commonly associated with gastro-esophageal reflux (GERD) and voice abuse. If you have any hint of GERD problems I also would rec. treatment pre and post-op.

Good Luck

------------------------------------------------

Posted on Jul 8, 1998 at 16:42

Name : Jim Fors

email: jim.fors@noaa.gov

Question:

I take 400mg I3C daily...should the 400mg be taken all at once or spread out during the course of the day?

Answers/Comments:

(Posted on Jul 15, 1998, by Michael Zeligs, MD)

"Regarding the question of relative benefits of a single large or smaller divied doses of DIM/I3C and clininical response in RRP, I am not aware of a study that does this comparison. The Rosen study used a twice a day dosing regimen. Theoretically, if the objective in supplementing is to convert the metabolism of vocal cord epithelium then it is necessary to either deliver 2OH estrone to this tissue via the blood or to have DIM arrive at the tissue in sufficient concentration to shift the estrogen metabolism of the vocal cord tissue itself. The latter is probably most important. Both of these objectives would seem to be served best by a single high dose of indole. This would yield higher blood levels of 20H estrone from the liver and higher blood levels of DIM.
Keep in mind that a larger single dose may also provoke more of short term side effects like transient dizziness."

(Posted on Jul 15, 1998, by Bill Stern based on conversation with Dr. Leon Bradlow)

There is no need to spread a daily dosing of I3C throughout the day. There really shouldn't be any difference whether the dosage is taken all at once or twice a day.

------------------------------------------------

Posted on Jul 6, 1998 at 16:40

Name : Noora Aljarn

email: noora_aljarn@yahoo.com

Comment:

I am a 17 year old girl with RRP. I have had RRP since 1 year of age. I have a tracheostomy for 16 years,( can't remember life without it). I would like to get together with other patients with RRP if it is possible.

I can be reached at the Ronald McDonald House

267-07 76th Ave New Hyde Park NY Tel: (718) 343 5683

THANK YOU FOR THIS EXTREMELY WONDERFUL WEBSITE

Your's sincerely Noora Aljarn

(Note: Noora will be at this address for much of July before returning to her home in the United Arab Emirates)

------------------------------------------------

Posted on Jul 6, 1998 at 16:40

Name: Anonymous

Question:

Do you have any comments on the success of web removal surgery?

Could drugs that prevent the growth of blood vessels, help if taken after surgery during the time frame of web growth. Since growing tissues need growing blood vessels, preventing these vessels from growing would seem to prevent webs.

Do you know what the time frame for web growth is after surgery, or when I can breathe a sigh of relief afterwards?

Answer/Comments:

(Posted on Jul 13, 1998, by Bill Stern, based on phone interview with Haskins Kashima, MD)

There is no generally applicable answer regarding success rates of web removal surgery. Webs vary considerably from patient to patient, and as such, the chances that they can be successfully removed must be assessed on a case by case basis. Thick webs generally present a more challenging situation than thin webs.

In any case, a second opinion is strongly advised before undergoing web removal surgery.

(Posted on Jul 28, 1998 at 18:49, by Anonymous)

My doctor used dissolvable sutures during web removal surgery to prevent the return of the web. They were placed in a way that made it difficult for the web to return. According to the doctor, the first 3 days after surgery are the timeframe that webs form.

Of course, with papilloma, we also took a risk that the more complicated surgery with sutures might stimulate papilloma growth, but it hasn't been the case so far, and the web has not returned either.

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