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Welcome to RRP ISA's community.

In addition to a page on Frequently Asked Questions, Treatment Strategies, etc., it was felt that the following suggestions and thoughts might be especially appreciated by newly diagnosed RRP patients or their parents.

Patients who have coped with RRP for awhile also might find this introductory-section of some benefit.

(1) Surgical outcome, in virtually all cases, is for me all-important. It preempts every other consideration, as well it should. If the outcome is good, your physician as a surgeon is probably just fine. If it is not, and especially if that pattern repeats itself, then patients are encouraged to reconsider their choice of surgeons, regardless of that surgeon's vitae. Bear in mind, however, that by outcome, I do not mean to insert unrealistic expectations. Damage and scarring from botched surgeries in the past will not be magically reversed. Moreover, while RRP may be controlled by surgery, it is typically not cured through surgery. Over-aggressive surgery, especially after RRP is well-established and has recurred several times, is potentially dangerous and very rarely a productive endeavor.

(2) There is a need for you to educate yourself on RRP ASAP. If you're an adult, you don't need to read the whole website at first, but you are encouraged to at least read the Learn section and all pages under that, except for "JORRP and Kids." Do read the latter section as well if you're a parent of a child with JORRP, but bear in mind that the Dr. Keerti Shah statistics from the paper in 1998 are very old and have been superceeded with updated data. The 8% risk level that has been quoted in that paper has been shown to be false--Dr. Shah stated it is false, and it is much, much lower--even as the epidemiological assumptions have been updated.

(3) Take good care not to expose yourself to "irritant fumes." A lot of people have reported that these exacerbate RRP (see our survey data off of the main website and please fill out the survey yourself, if you have not already done that). Even more patients are uncertain, and in many of these latter cases, I suspect the patients were in fact adversely affected. We know (Drs. Steinberg, Abramson) that irritants [e.g., any kind of smoke, formaldehyde, new carpeting, office machine solutions] can and do cause flare-ups of HPV-disease. You simply cannot expect RRP to settle down when you expose yourself to these respiratory irritants that are known to cause a flare-up.

(4) Note too that certain medications (e.g. an array of SSRI antidepressants or meds for bipolar disorder) have the potential to seriously dry out the mucous membranes of mouth and the larynx, making it susceptible to fatigue and easy irritation, and even THC in marijuana has been identified as acting as an irritant itself.

That is not to say that one should avoid treating depression or bipolar disorder. They need to be treated, since they are real disorders and tend to become even worse. But you may wish to look to another antidepressant, to be discussed with your physician. Cymbalta might work, where dry-mouth might be at least partially mitigated. EMSAM, an even newer one based on an entirely different principle--it is neither an SSRI nor a SNRI--might very well show a minimal side-effect profile at the 6 mg dose level, although it will probably vary between patients. EMSAM (6 mg dose) would also help preserve your normal emotional peaks and valleys, allowing you to feel more human and less robotic. It also does not disturb sexual functioning, which is a very common side-effect from anti-depressants. EMSAM is outrageously expensive, however. Selegeline (deprenyl) is the same thing, taken orally, and it is generic. It could be 25-30 times less expensive than EMSAM, even with insurance. Potentially serious food related side-effects arise with doses exceeding 10 mg/day of selegeline or 6 mg of EMSAM. Taking it within these parameters is reportedly without these side-effects. You should definitely discuss this with your physician if you are interested.

(5) Remind your physician to thoroughly clean your laryngeal ventricles at each surgery--think of them as the pockets in a pair of Levis--as clusters of papillomas like to hide-out there. Not all doctors have been well-trained in that procedure. Make no assumptions on their training or diligence in this regard based on their vitae. Medical evidence shows that it is essential that this be done in every and every surgery, which is why I am not a fan of in-office surgery, since this procedure cannot be done in that setting.

(6) GERD or laryngeal reflux disease is an issue of enormous import in connection with RRP. If present, reflux repeatedly bathes the larynx in stomach acid. This is a potenti irritant and it is known to exacerbate RRP. This can occur even when there is no heartburn or any other symtoms that you feel. Many RRP physicians offer prophlactic proton-pump inhibitors (e.g., Nexium, Prilosec) in in subclinical GERD, but they are known to have side-effects, some of them potentially serious, especially when taken over time. If you or your child needs to take rexflux medication, by all means do so, but at some point early on, also insist that there be appropriate testing to determine the actual medical need for these medications. You will probably be referred out to a gastro-enterologist. The tests are expensive and they are arguably a hassle, but they are definitive and they are important. They will tell you whether reflux is actually present and precisely when it is present. You would do well to avoid settling into a pattern of taking these reflux meds on any kind of chrnoic basis without such testing.

(7) Always make sure your surgeon has had significiant hands-on experience in any technique he or she uses. There is a steep learning curve with the KTP or PDL, for example, and it is absolutely untrue that they are harmless. The same could be said for any surgical modality, of course. They are never any better than the surgeon, and that is almost always a function of the surgeon's level of experience. I would rather have a seasoned CO2 laser surgeon using a very low power setting, for example, than a relative inexperienced surgeon using the microdebrider or pulsed-KTP.

(8) Take care not to internalize any hype about technique, noting that these days, there is a lot of hype out there (e.g., pulsed-KTP, etc.). Each technique has its place and, ideally, they are often used together (e.g., microdebrider on the cords, laser for the ventricles, etc.).

(9) Do not be afraid to ask your physician how many RRP surgeries he or she has done using this or that technique, and how often a month they do that. That's the only way you will fully understand exactly how experienced they are in the particular surgical modality they are proposing to use on you.

(10) You may be offered cidofovir, but I wouldn't use that unless I did not first respond to other treatments, and this caution is repeated by experts.

(11) Artemisinin is getting a lot more play in the RRP circles, and I encourage you in the strongest terms possible to carefully read everything under Learn>Novel Therapies, and pages appended thereto. Read also the Forum section dealing with artemisinin. A few patients and physicians are beginning to use it, but your physician may have never even heard of it. You may wish to print out some of the articles listed on the website and show them to your physician.

People ask me if I am still excited by artemisinin, and I typically say that it is not about me, but rather a function of reported outcomes when the "Guidelines" as developed on the website are very strictly followed. In this, we have had a number of very encouraging patient reports, more encouraging given the numbers of patients trying it, I think, than any other adjunctive treatment.

Does this mean that artemisinin is tantamount to hitting the ball out of the ballpark? We don't know, but that is a distinct possibility. I still think that further research on this should be placed #1 on the list. Bill Stern, a colleague who heads up the RRPF, a sister RRP organization, also agrees (see our joint letter to the RRP Task Force, etc).

[As of September 2009, the RRP Task Force had still done little or nothing relative to follow-up on this letter which, in combination with other factors, prompting RRP ISA's resignation from the Task Force.]

(12) I would strongly consider getting the Gardasil series. I encourage you to review Learn>Novel Therapies, where this is discussed at greater longth.

RRP ISA was the first to speculate--we rigorously qualified this as mere speculation, based on the inadequacies of Merck's own genital-based studies--that Gardasil might (??) have some therapeutic value in RRP. We have since modified these speculations.

Based on several patient-reports we've received, it seems to have little visible effect on adult-onset RRP. Some very smart people (e.g., Drs. Steinberg, Frazer, Broker), however, have speculated that it might reduce the chance of spread of already established disease in the larynx to such places as the lungs. Perhaps even the trachea, if given sufficiently early enough, I should think.

It may or may not have therapeutic value in JORRP, or juvenile-onset RRP. There are some patient reports showing that it might. The verdict is entirely out on that.

Remember, Merck only tested its therapeutic efficacy in the genitals, nowhere else. The respiratory system is different, based on some very compelling epidemiological data involving AIDS patients, who do not get RRP in any greater measure than most people (it is an extremely rare disease, and most people couldn't contract it if they tried).

Children have taken Gardasil who are as young as 2-3 years old without reports of side-effects. The same "preventative" speculations relating to Gardasil that apply to adult onset RRP would seem to apply in the case of JORRP as well, meaning that Gardasil might (almost certainly ??) insulate them from moving on to get RRP in the lungs, etc.

Note that Gardasil actually does prevent the acquisition of several HPV types, at least two of which patients almost certainly do not already have. (People who say they have two types based on past testing are rarely if ever correct, since the testing that occurrred typically only crudely measured high vs. low risk DNA, but these tests are incapable of identifying the exact HPV genotype.)

RRP patients already have a demonstrated vulnerability (probably genetic-based) to HPV-acquisition in the larynx (RRP), however. Since RRP comes in at least three DNA-flavors, preventing further acquisiton of yet another DNA variant of this virus would seem to make good sense.

Patients may have to pay out-of-pocket for Gardasil but maybe not. My insurance paid for it, and it isn't a great plan, by any means. In any event, I think that it's well-worth it.

One important caveat to all this, however. We have little data on the effect of Gardasil in the case of pulmonary RRP. We do have one patient who took it with HPV in her lungs, however, and she nearly died of pneumonia which she first acquired and which then flared-up almost immediately after her Gardasil shots.

Kathy Blankenship was very well-informed on RRP and served as our research coordinator. I was guardedly upbeat on the possibility that Gardasil might serve some treatment-related advantage, and so was she. Suffice it to say that the apparent effect of the Gardasil in the case of pulmonary HPV was not only inconsequential from a treatment perspective, but it appeared to inflame the lungs to the point where they were at least partially treatment-resistant.

Now, this effect is itself speculative, but the rationale through which local tissue inflammation might occur with Gardasil in the lower respiratory tract was discussed with an RRP expert who also happened to be a respected immunologist. He agreed that the speculations made sense, as did our logic.

The bottom line is that until much more is known, if it were me, I would absolutely not risk taking Gardasil with pulmonary RRP.

I understand that with the latter diagnosis, patients need hope.

Interferon (Intron A, not Roferon, as stated in Learn>Treatment Strategies>Interferon) might indeed offer a measure of hope, where it might actually slow down the RRP.

Artemisinin is being used in all manner of cancers, including laryngeal cancer, and it is already been documented as reversing lung cancer on a CT scan (almost certainly, an HPV-conversion) in one of our RRP patients (see Learn>Novel Therapies>Patient Reports).

If I had pulmonary RRP, that would be the very first thing I would look toward, and IMO, that would offer far more treatment-related hope--based on proven results, not mere speculation--than Gardasil does at this time.

(13) Finally, patients should not be afraid to ask questions and use their common sense. I myself am not a physician, for example. Much of what we have on this website is based on research that I undertook as a patient, along with literature searches, followed up by sound-reasoning.

RRP physicians can be good surgeons and are sometimes supportive/open-minded, but they are rarely capable of pulling any rabbits out of the hat in terms of curing RRP. While I'd be at a loss in the operating room, a good case could be made that most physicians--even the so-called experts--know less about RRP than we do, and that they know less about your particular RRP-condition than you will after living with it for awhile.

The point here is that you should not put anyone on any pedestal. Educate yourself as much as possible about this disease. From that vantage point, do not be afraid to use common sense. Do not be afraid to think or even to speculate. Do not be afraid to make treatment decisions based on your observations and on well-reasoned thought-processes.

The reverse is also true, of course. Do not base your speculations or treatment decisions on ignorance, emotion or fuzzy-thinking.

(14) Be careful about getting sucked into a pattern of self-pity or hysteria with this disease. It is common in some circles, for example, to greet newbies to RRP with the kind of maudlin sympathy that one reserves for terminally-diagnosed cancer patients. Like attracts like, let's remember, and the sense of deepening gloom and desperation can become very murky. The question is whether some of this is not more about clinical depression than RRP.

In my opinion, this kind of doomsday-scenario at the outset is a very inappropriate response to any newly diagnosed RRP patient. More than that, it is a very destructive response.

RRP can indeed be very difficult and it is always a disturbing diagnosis. But very often this is made much worse by outdated or inappropriate treatments and treatment-induced injuries + surgical-oversights (missing the ventricles, for example). The disease itself or the patient inevitably receive the brunt of the blame; few think to question the underlying competence of their physician.

It's one thing to welcome a newly diagnosed member into a community of fellow patients who are also coping with RRP and who are looking for supports. It's quite another to extend a welcome to a sub-community of "victims," not unlike a welcome greeting to the cult of the undead.

In my mind's eye, I picture a Hammer Film from the 50's, where an unwitting and unfortunate visitor has just entered the Transylvanian castle gate. The Daughters of Dracula slither down the staircase. In a voice dripping with solicitude, they say in singsong-harmony, "Welcome to our community, O innocent visitor. Dinner is prepared. Eat. Then you will retire to your room. And wait." The visitor immediately hears the howling of wolves in the distance. "Listen to the children of the night," one of our hostesses says. "And again, welcome to our circle of victims." The visitor shivers with an ever-growing sense of hopelessness and dread.

Be careful, therefore, and be mindful. You don't need to surround yourself with garlic. Just educate yourself about RRP. I mean, really educate yourself.
 

In conclusion:

(15) You or your child were assuredly dealt some difficult cards, but your diagnosis isn't nearly as dark as it was even ten years ago, and there is a strong likelihood that your condition will, in fact, be quite manageable. Don't panic, in other words, and don't accept the discouraging premise that you're likely to need surgery after surgery, ad infinitum. RRP patients often get desperate, but desperation is not a good space in which to make difficult and often life-changing decisions.

I hope this has been helpful. Remember too that one of the so-called existential challenges we all face is to learn to turn problems into an opportunity for growth, and to make lemonade out of lemons. Good luck with RRP and, at a completely different but no less important level, good luck too with the business of making that all-important lemonade.

Warm regards,

Michael Green, Executive Director
International RRP ISA Center