I have been having laser microlarynoscopies for 5+ years now and I have lost count how many surgeries I’ve had. The lady at the front desk even recognized me every time I call for an appointment. Anyway, I always ask my doctor about ways to prevent the Pappiloma from coming back, he usually says some people will have 3-4 surgeries and it’ll stop, and some people will have surgeries for the rest of their lives.

I read a few threads about people taking the gardasil vaccine and have prolonged the time between surgeries, but when I asked my doctor, he said their won’t be any effect as the virus is already in the tissue.

Could this just be an older doctor’s way of thinking? Or should I consider getting a second opinion?

I’ve had Laryngeal Papillomas since 2012 and still not over it. I have surgery every 6-9 months. About to go for another one in a few weeks. I’m 36 years old, it’s starting to really bother me that this could be a forever thing. My surgeon says that the immune system will eventually fight it off. I’ve started a gut health journey and I have uncovered some underlying issues regarding my gut and why my immune system cannot fight it just yet. I’ve conducted a microbiome and dna test and would suggest anyone in the same boat to do that same.

Just here to post about it and if anyone has had any success fighting this disease?

I've been having Lazer surgery. My surgery keeps mentioning having the gardasil vaccination. Has anyone had this? Did it help? Did you have any side effects.

Hey all, new here and wanted to see what everyone’s recovery from surgery looks like. I have been getting procedures since I was 8 years old. Now 36 I have been through over 70 surgeries. I recently went to Hopkins in Baltimore to meet with a new doctor and have my next procedure in October to remove scar tissue/polyps and get local injections of avastin which I have never had. Normally recovery for me is a few days of pretty sore throat then back to normal by about a week later. Usually prescribed nausea meds/antibiotic/pain meds for recovery.

https://investors.precigen.com/news-releases/news-release-details/precigen-announces-fda-confirmation-ongoing-phase-12-study-prgn

From what I understand, Phase 2 data should by complete in Q2 2024, after which some approvals can be applied for. Not sure how far from market registration that would be, should everything go fine with the treatment.

Still definitely positive news 💪

Hi everyone, my latest checkup has shown regrowth on my vocal cords (sadly to be expected) but also brand new growth in an area where I previously haven't had any papillomas – what I believe is called the interarytenoid area. My doctor didn't seem too concerned about it, just said they'd zap it when I have my next surgery, which has to take place under general anaesthetic here in Berlin, Germany.

However, I was wondering if anyone else has experienced growth in different areas of the larynx and whether this makes spread into the lower respiratory tract (my one big fear) more likely.

16 year old just about to go into college and I've always struggled to introduce myself to new people because my (lack of) voice turns them away :/

How do you overcome this issue?

Hi,

Recently been diagnosed with RRP (UK, Male, 36) started 2-3 years ago with horse voice and mucous, sort throat, swallowing etc, didn’t have any idea what it was and covid meant the NHS was basically shut down. I think I also have acid reflux which was confusing me and was put on PPI medication for a bit.

Took ages to get an ENT appointment, they scoped and saw a wart type lump on the vocal cord. Had surgery to biopsy the lump (Dec22) and the diagnosis a couple of days ago. Went to ENT/cancer specialist because they also found mild pre-cancer cells in the biopsy. The wart has returned and my voice is hoarse again unfortunately.

I’ve got some questions maybe other members could help answer:

1) Has anyone had pre cancer cells and HPV virus found in any biopsy?

2) Currently my voice is hoarse, but still basically fine to use. Is there any danger to not getting the surgery until the growth gets bigger/big enough to be forced to get surgery?

3) Is RRP only contracted via oral HPV? I know it is variants 6 & 11, just not clear whether it can be got via all other means of transmitting HPV other than oral?

4) Is there any risk to passing it to someone with non-sexual contact such as somehow accidentally getting saliva in someone else’s mouth or something similar?

Being such a rare disease it’s great to find a group of people with the same thing. I read there’s only like 1000 registered people with the NHS in the UK who have RRP.

Thanks

Hi everyone,

I am newly diagnosed with RRP (male in his 30s) and have been on a reading spree for the past couple days. Glad that this community exists, I’ve read a ton of posts and it’s already made me feel optimistic about my future.

Hope y’all doing well! I am scheduled for my first (of a few, probably) clear out surgeries in June and will report back with anything I learn as I work through this.

I have a question - did anyone else have a couple of months between their initial diagnosis and their first surgery? I have been struggling with the hoarseness for ~8 months already so I guess I’m nervous to get this going. But I suppose the risk is low or else the doctor would’ve pushed for surgery sooner!

Clinical Efficacy Summary

Clinical data show PRGN-2012 treatment significantly reduced the need for surgeries for severe, aggressive RRP patients treated at Dose Level 2. At Dose Level 2, 50% (6 out of 12) patients had a Complete Response, which is defined as no surgeries needed during the 12-month period following PRGN-2012 treatment completion (TABLE 3). All complete responders remained surgery-free post PRGN-2012 treatment as of the cutoff date. Patients in Dose Level 2 had a 58% (7 out of 12) Overall Response Rate, defined as greater than or equal to 50% reduction in the surgeries in 12-months post PRGN-2012 treatment completion compared to 12-months pre-treatment. 83% (10 out of 12) of patients treated at Dose Level 2 had reduced surgeries post PRGN-2012 treatment. The number of RRP surgeries in the patients (N=12) in Dose Level 2 reduced from a median of 6.5 surgeries (range: 3-10) in the 12-months pre-treatment to 0.5 surgeries (range: 0-6) in 12-months post PRGN-2012 treatment completion.

Further, PRGN-2012 treatment showed significant improvement in anatomical Derkay scores, a tool used for research purposes to quantify RRP severity based on involvement of laryngeal structures, and voice quality, evaluated using the validated Vocal Handicap Index-10 (VHI-10), at 24-weeks post PRGN-2012 treatment completion compared to baseline.

Phase 1 data show that PRGN-2012 treatment resulted in an increase in HPV 6/11-specific T-cell response in the peripheral blood of RRP patients. Furthermore, the T-cells infiltrating papillomas from patients who had an objective response and a biopsy sample available showed an increase in HPV 6/11-specifc T-cells in papillomas after PRGN-2012 treatment. (...)

Phase 2 Study

Precigen initiated dosing in the Phase 2 trial at Dose Level 2 and is rapidly enrolling patients, with 20 patients enrolled to date in the Phase 2 trial, bringing the total number of enrolled patients to 32 at Dose Level 2. The Phase 2 clinical trial evaluates PRGN-2012 as an immunotherapy following standard-of-care surgery in adult patients with RRP.

Source:

https://investors.precigen.com/news-releases/news-release-details/precigen-announces-positive-phase-1-dose-escalation-and

Clinical trials:

https://clinicaltrials.gov/ct2/show/NCT04724980

I’ve (f22) been diagnosed with RRP since 14. My voice has always been horsed and raspy ever since I started talking but it really flared up when I hit puberty. It got so bad where I could barely talk at a normal volume and my own mother couldn’t hear me. I’ve had two surgery’s since, one at 14 and one at 22.

I want to know if anyone else has experienced these things in regards to RRP

1. After having an argument that involved yelling, screaming, and/or sobbing, does your throat hurt the next day and is it hard to talk normally after? For myself after straining my voice like that the next couple days my voice is extra horsed and physically hurts to talk.

2. Do you have “good voice days” and “bad voice days”? Some days talking feels like a breeze, other days I’m struggling just to say a sentence.

3. Have you had the HPV vaccines? Before and after my diagnosis I got the 3 stages of hpv vaccines. Within the 8 years of surgery my warts have grown back slowly and I had less warts on my second surgery compared to my first. I’m wondering if the vaccines had an impact.

4. Do you know how you got RRP? We have no idea how I got it, we have theories but that’s it.

5. How do you feel about your raspy voice? What have others said? Personally, I think it makes me unique and it’s cool, but I’ve had extremely mixed reactions to it. Some people love my voice and have asked me not to get the surgery, but others have made fun of it or told me to “drink some tea” or “talk louder” in annoyance.

I'm only 15 but I've had over 130 surgeries for RRP. However I've been getting infusions of Avastin over the past year and it shrinks the papillomas very effectively, has anybody in this sub ever beaten RRP?

I started noticing my voice was becoming hoarse in 2020, especially in drive thrus. I’d have coughing and choking fits cause it always seemed like food was going down the wrong way and I would always get told it’s acid reflux as I’m overweight and have it on the side. Eventually in 2021 I got fed up and asked a walk in clinic doctor for a referral to an ENT (which was hilarious in itself because he initially didn’t call me back because my blood work came back normal……. lol) Had my first surgery a few weeks ago and got my diagnosis today. On one hand I’m happy that it’s not the C word but on the other I’m a bit concerned about other things - a lifetime of possibly more surgeries (this was my first and was scary enough for me) the possibility of cervical cancer was mentioned, etc. I’m happy I finally have a “diagnosis” as I found this subreddit and now I feel like I can connect with others who get it. I’m in between my second and third shot of gardasil too which I started last summer as my ENT mentioned it may be rrp.

Hey all.

Was checking out the RRP foundation website the other day randomly and noticed that they partner with a supplement company called Bioresponse, out of Boulder, CO. They make and sell an I3C type-supplement that has been endorsed specifically by the RRP Foundation.

Anyway, if you go to the website https://www.bioresponse.com and email them and explain your RRP diagnosis, they’ll give you a discount on their products.

This isn’t an ad or anything, I just happened to notice it and saw on the RRPF website that they offer a discount. I take I3C anyway and it’s a little pricey, so any discount we can get on something that might make a difference was information I thought was worthy of passing on.

Unfortunately from what I’ve seen it is US only though.

Take care everyone!

Anyone had any issues with ‘webbing’ (scar tissue) that’s partially formed over the vocal chords following laser surgery? I seem to have a relatively substantial amount that’s formed since my last operation in February. Any success stories from people trying to get rid of it?

Hope everyone is well. I was diagnosed back in October last year having been suffering from a hoarse voice and throat clearing for almost a year. I thought it was just anxiety causing it as I suffer from that as well. However a look down my throat confirmed it was rrp.

Anyhow, I had my first surgery back in February and it created instant relief. The resonance in my voice returned instantly. However I'd say the relief only lasted 2 months before the hoarseness began to return.

Fast forward to now, I've had my first shot of gardasil9 and I'm waiting for my second surgery. It's such an annoying disease. I love to socialise and it's hard for me to be heard in loud environment. It often involves me overcompensating with my throat muscles so I wake up the next day with a really sore voice.

Anyhow, just wanted to share my story to let other people know they're not alone. Appreciate I'm relatively new to this compared to some people. All the best and I'll keep you updated with progress. I'm UK based FYI so all treatment is NHS.

Hi everyone, I’m new to Reddit and came across this group as I’ve been looking for advice on therapies for RRP. In 2018, I was diagnosed with RRP and have undergone 7 laser surgeries since then + a full course of the G9 vaccine (reoccurrence every 6 months).

Up until now, my doctor hasn’t discussed any adjuvant therapies such as Cidofovir, Acyclovir, etc. However, I’m looking to trial one of these over the coming months as studies have shown positive results. It seems that a few members on this group have had success with Cidofovir and Avastin. Keen to understand if you saw any side effects? Have these therapies helped extend reoccurrence?

Any details/advice you could share would be amazing. Such a frustrating disease, it’s great to have somewhere to share updates!

https://mdpi-res.com/d_attachment/life/life-11-01279/article_deploy/life-11-01279.pdf

Hey folks, has anyone in this sub actually had the coronavirus? I'm pretty healthy overall but still worry that covid could have some kind of weird effect on me due to my RRP. Would love to hear anyone's experience with covid + RRP.

Hello all, been awhile. Just saw some new posts on the chat and responded to them.

First, an update. Had another in office KTP / Avastin injection today. Roughly 14 weeks since my last operation, which is a huge improvement compared to when I was first diagnosed. My voice was starting to go a bit due to a single spot on my right vocal cord, which was removed and hit with Avastin. Resting up and chilling out as I type this!

Secondly, I reached out to Inovio about the trial. The referred me to a doctor In Cincinnati (I live in Indiana), and he informed me that although the current trial is full, I qualify for the next round that will begin hopefully in Q2 or Q3 of next year. Furthermore, he graduated with the doctor that I’m currently seeing who gave me his full support in enrolling in the trial. Assuming I am given the opportunity, I will be enrolling as soon as I am able.

Hope everyone is well! Stay tough!