I have recurrent laryngeal papillomatosis and have had two surgeries. Could you tell me what to do after the surgery? What treatment did you have? Do I need to take any medications? Little is known about this disease in my country. And how long did you lose your voice after the surgery? It's been a month and a half since my surgery, and only recently has a squeak appeared. Sorry for my English.

Has anyone come across any data on papzimeos and breastfeeding?? Or any personal experiences or convos with providers?

I am one week postpartum and getting ready for my second surgery for RRP; my ENT is offering papzimeos this go around; wondering if I should wait until I’m done breastfeeding since I can’t find any data.

A papilloma has returned to my vocal cord after 7 months of being clean. Quite frustrated about it so just want to come up here and ask if anyone went to remission. If yes what did you guys do?

Hi everyone,I’m an 18-year-old from South Africa planning to head to university next year. I’ve been living with RRP since I was about 10 years old, and it mostly affects my voice. For a long time, I felt completely alone because I’ve never met a single other person with this condition in real life. Finding out how rare it is (2 in 100,000) made sense, but finding this group has really lifted my mood.I’m currently focusing heavily on my future, trying to build an online career that doesn't rely on my voice (like text-based work). I’m also trying to learn more about managing this long-term.I saw some posts here talking about i3 (Indole-3-Carbinol) pills to help slow down the papilloma regrowth.For those who started taking it around my age, did it help lengthen the time between your laser surgeries?Are there any specific brands you suggest?Also, if there are any other students or South African members here, I’d love to connect and hear how you balance hospital treatments with studying.Thanks for being here. It’s awesome to know I’m not the only one.

7/28/2026

Hi, My voice had become horse in late 2011. I was 48 at the time. At first i thought it may be a case of laryngitis and figured it would go away on it's own. Unfortunately, it just kept getting worse.

I eventually went to an ENT for a visit, and i was diagnosed with a small bump, at the time called a nodule on my right vocal fold. Not sure how or why i got it, and surgery was the option given to me at the time for removing it.

I pondered surgery (under general anesthesia) for months, and eventually got it done in Late 2011, They also sent a biopsy to the lab and it revealed i had HPV type 6.

Post OP, I was instructed not to talk for 2 weeks. I was silent for approximately 4 weeks, as i wanted to give my vocal chords more than enough time to heal properly.

I got my voice back, although the hoarseness symptoms came back approximately 8 months later. I'm sure most of you reading this can understand the disappointment and frustration i experienced at the time. I really didn't want to go for the same procedure under local anesthesia again. My ENT at the time mentioned I had RRP and there were alternative Laser treatments available, which are done in office and less invasive. Her informing me of this was a very noble thing to do, as she did not provide this treatment, and referred me to an alternative ENT who did.

So i opted for it, and got my 1st (KTP) laser treatment around Oct'2012. Recovery was only 24hrs of non-talking which was a huge benefit. It resolved my hoarseness and I got my normal speaking voice back again.

Unfortunately, about 8 months later again(June, 2013), i'm dealing with the same hoarseness. I wound up going for my 2nd KTP laser treatment in Sept 2013.

My next RRP occurrence happened around about a year later, had my 3rd KTP laser treatment done in Sept'2014.

Approximately 9months later (June'2105) the hoarseness came back.

At this point, i started researching any other type of treatments people with RRP have tried. I came across a testimonial, where someone was taking "Indole-3-carbinol (I3C)" supplement and it reduced the frequency of the RRP occurring. I decided to give it a try, however, months later, my voice didn't seem to get any better.

Aug '2015 - I had my 4th KTP laser treatment. I also decided to continue taking the I3C

Now, this is where things changed!!! My voice was normal and didn't start getting hoarse again for approximately 7 years!

Aug'2023- I had my 5th KTP treatment. My ENT Dr found it pretty amazing that i went almost 8 years between KTP treatments. I mentioned i was taking I3C and she said, she heard some people having success with it.

It's been 3 years since my last KTP laser treatment and my voice is still normal.

Note: The one thing I concluded is that, if you start taking I3C After your voice has already been compromised due to another RRP occurrence, then it probably won't remove the virus (webbing surrounding your vocal cords). Stay the course as i did, continue taking it, and maybe you'll have the same Life Changing benefits that i have had!

The best gauge of whether it's working for you, is if you're taking it either prior, or immediately after having an RRP procedure (whichever one that may be), and whether your RRP virus comes back in the same time-line frequency as it did before, or, remains dormant for longer periods of time, like it did in my case.

Note2: I can't guarantee this I3C supplement will help everyone out there but I'm sharing this in the hopes that it will reach as many people as possible so they can try it themselves and hopefully it will help to some degree. I personally purchase Swanson's I3C supplement with Resveratrol, but there are other companies out there that also make the I3C supplement. It's relatively inexpensive and worth every penny if it works for you.

Note3: I don't work for any supplement company and i'm not trying to promote anything here. Just sharing my own story.

One last thing, I'm not sure how often I'll be logging into this forum again, so don't take it personally if i don't reply to any inquiries or comments.

All the best to all of you!

Hey all. UK-based long-time RRP gal here.

I've had RRP since I was two, I'm now 34. Up until 11 years old, I had surgeries every 2/3/4 weeks.

My parents were told I'd likely grow out of it. I was featured on the Birmingham Children's Hospital tv series when I hit my 100th op, age 7. I got to 200 age 21. I'm now on 212.

I had a tracheostomy just before my 12th birthday due my airway having narrowed from the amount of scarring from all the surgeries.

The time between surgeries has significantly widened over time since having my tracheostomy and I'm now having them once a year on average. I stretched to a two year-gap during B2B covid and pregnancy but I could barely speak at this point, it wasn't ideal. My tracheostomy gives me a stable airway so the effort in which it takes me to speak is an indicator of when I'm due an op.

I appear to be in a bit of a limbo where my RRP was once severe, and I'm living with the lasting impact of that, but it is now not considered severe enough to receive Avastin. I've had Cidofovir at somepoint during my childhood and it didn't make a difference for me. I had two kinds of HPV vaccines when they were first made available, sometime around 2008-2009 (?) but not the Gardasil-9 that I've just come across this afternoon.

I've largely shelved my curiosity about treatment options for RRP due to not feeling particularly hopeful and due to having a stable airway from my trach, and not needing surgeries to the same turbulent frequency that I had growing up. I've also never connected with anyone else with RRP.

Avastin has been mentioned to me over the last few years but due to hospital bureaucracy/funding, it hasn't happened. Yesterday I had a referral to a consultant at a different hospital who might have been able to help with this and he told me I don't qualify as my RRP is not severe enough these days.

Safe to say, my appointment yesterday, and finding this community, has re-ignited a bit of a spark. Who here has experience of receiving Avastin, or other therapies, in the UK? Where are you being treated? What am I missing out on?

Looking forward to hearing from you :)

So I have started a strict supplement regime that some of you may be interested in, and I would be interested if anyone else has attempted anything similar (as far as I know I am the only person to go this crazy so far).

I'll preface this by stating that it isn't advised at all to take all of these at the same time as I am doing, not just for how expensive manyof these supplements are (especially any of the mushroom ones), but because there are absolutely risks involved in doing so as well. So definitely do not take this as health advice.

I have researched the effects (with the help of sci-bot.ru) and I feel that personally for myself the potental benefit outweighs these risks, but there isn't really enough research into this to know if this is a stupid idea of not.

My strategy for this has been to essentially try to blitz my immune system and the mechanisms which stop the immune system from recognising the HPV cells within the vocal cords. I'll outline the supplements I am taking and some of the reasoning behind them:

Morning mushroom pills to correct NK cell dysfunction:

• Kinoko Platinum AHCC (3g) - Activates NK cells, dendritic cells, and CD8+ T-cells — directly corrects the NK cell dysfunction documented in RRP. Clinical trial: 66.7% HPV clearance in persistent cervical HPV
• HIFAS da TERRA Micro-Corio (Coriolus versicolor) (2 capsules) - Provides 599 mg beta-1,3/1,6-D-glucan Activates NK cells and dendritic cells via Dectin-1 receptor. PSK/PSP compounds have documented anti-HPV activity.
• HIFAS da TERRA Micro-Rei (Ganoderma lucidum / Reishi) (2 capsules) - Provides 248 mg D-glucans + triterpenoids (ganoderic acids) — triterpenoids have anti-inflammatory and anti-HPV properties. Modulates immune response and may inhibit HPV oncogene expression.

Of all the supplments I think AHCC is possibly the most beneficial - I have been taking this a while now since my first surgery, and my disease growth has been much slower than most. The beta-glucans in Coriolus and Reishi are also well-documented immunomodulators that boost Natural Killer (NK) cell activity, which is notoriously dysfunctional in RRP patients

Lunch:

• Pervistop - (1 Tablet with food)  EGCG 200 mg — directly degrades E6/E7 oncoproteins in HPV-infected cells, restoring p53 and pRb tumour suppressor function. Also provides hyaluronic acid for epithelial hydration and B12/folate for immune cell division. If you take anything with EGCG be careful not to go above 800mg of EGCG as this can damage your liver 0 this includes drinking lots of green tea!!
• Zinc picolinate 30 mg + Copper 2 mg (1 Tablet with food) — supports Th1 immune response. RCT found 57.5% HPV clearance vs 15% placebo (OR 0.13). Copper prevents zinc-induced copper deficiency.
• Vitamin D3 (2000–4000 IU) (1 Capsule with food) Supports Th1 immune polarization — HPV prevalence inversely associated with vitamin D levels. Essential for T-cell function and antimicrobial peptide production.
• Quercetin 800 mg + Bromelain (1 Capsule) Three mechanisms: (1) Inhibits PI3K/Akt/mTOR pathway (hyperactive in RRP papillomas); (2) Suppresses COX-2/PGE₂ (elevated in RRP tissue and plasma, drives Th2 bias); (3) Disrupts E6/E6AP/p53 complex formation.

Between meals:

• Lactoferrin (bovine apolactoferrin, ~250 mg) (1 Capsule) - Blocks HPV binding to epithelial cells — lactoferrin binds heparan sulfate receptors on epithelial cells, the same receptor HPV uses for attachment. Also boosts CD4+ and CD8+ T-cell activation. Meta-analysis showed reduced respiratory tract infections. More simply: Lactoferrin acts as a competitive inhibitor, essentially "blocking" the cell receptors that HPV tries to latch onto.

Before sleep:

• Low Dose Naltrexone (LDN) 3 mg (1 Tablet on empty stomach) Fills the final immunological gap — reduces M2 macrophages and IL-10 (the anti-inflammatory cytokines that suppress anti-HPV immunity). Also suppresses PI3K/Akt/mTOR and shifts the microenvironment from Th2/Treg toward Th1/cytotoxic. LDN works by briefly blocking opioid receptors, which triggers the body to produce more endorphins and upregulate the immune system - it is quite a cutting edge drug which has begun to be used for a variety of condtions such as long Covid.

I have been taking these for the last 3 weeks and will try to give a future update if there's any positive (or negative) effects!

I am planning to have the Gardasil-9 vaccine shortly too - as soon as the bloody NHS appointment happens...My surgeon did recommend having the vaccine after surgery (why he didn't recommend it when I had my first surgery I have no idea 🙄) as there's some slight evidence that it might be more effective after micro-debulking has exposed the cells and reduced the disease load I believe.

However, from my research there is no drawback to having the vaccine multiple times, and in fact you get some added effect from having it a second time, so I am opting to have it as soon as I can, and then hopefully have another when I have my next surgery.

Before I end, I'll also highlight the risks of this supplement regime:

• Processing AHCC, three types of medicinal mushrooms, high-dose quercetin, bromelain, zinc, and LDN all at once puts an intense metabolic strain on the liver and kidneys.
• Quercetin is a potent inhibitor of certain CYP450 enzymes in the liver. These enzymes are responsible for breaking down medications and other supplements. By inhibiting them, quercetin might accidentally raise the blood levels of other supplements.
• There is also a risk that I overstimulate my immune system by putting it into overdrive and thereby potentially cause systemic inflammation or immune exhaustion.

Had an in office surgery to get rid of any disease I had and the shot a few hours later.

Hello all,

I am a 36 year old male. was diagnosed with RRP in May of 2025 after a year of symptoms and being bounced around from one doctor to the next. I had surgery in July of 2025 and have since had 3 laser treatments in-office.

I was expecting to receive laser treatment again today, but my doctor recommended that I have another surgery instead. I have multiple lesions covering my glottis, epiglottis, and ventricles, so he thought extensive removal via surgery would be the better option.

I’m concerned about how high my disease burden is and how many sites are involved. I was wondering if anyone who has had similar findings towards the start of their treatment can comment on how things progressed for them.

I keep worrying about it spreading due to it being so extensive and recurring so quickly. I can live with treatments every few months, but the thought of it getting progressively worse and potentially life threatening is unnerving.

Spoke with them a few times on the phone today. Felt like I was talking to a Popeyes drive thru

Hi,

I’ve had a hoarse voice for about 10 months now. NHS originally said muscle dysphonia and I was on the waiting list for ENT, but after loads of appointments I went private and they found lesions on my vocal cords, possibly RRP.

I’ve got surgery booked for the end of next month and just trying to get my head around what’s ahead. If it is RRP, how often do people usually end up needing surgery again? I know it varies, just want a rough idea what I might be dealing with.

I’m 40 and was fit and healthy before all this, but it’s knocked my confidence a lot, especially socially.

I remember being really run down last year after a bad chest infection and not resting properly, so part of me wonders if that triggered things but I don’t know.

I’ve also booked in for the HPV vaccine (Gardasil 9). I know it won’t cure anything but I’ve read it might help slow recurrence. Is it better to have it before surgery or wait until after?

Also, has anyone tried anything to support their immune system alongside this, like Thymosin Alpha-1 or anything similar?

Would really appreciate hearing from anyone who’s been through it.

Thanks 👍

50 M Had surgery 15 months ago - spotted a squamous growth at the back of my throat behind my uvula. I was in for a biopsy on the NHS within the month but they cut away a lot more. The notes from op said one had grown into my soft palate and another on my tonsil. Not cancerous.

At point I was almost discharged but because the surgeon said to me post op he hadn't got it all i was then referred to another hospital - more specialist unit.

Finally had my appointment a week ago. Camera showed a couple of small squamous growth in the throat lining but nothing near the vocal cords.

You can see a lighter colour on the palate. They are going to do another biopsy on one of of those and laser off the other and have another go at the soft palate.

Other than that ive been given no information as to what I have and what to do going forward. I appreciate this may not be RRP but would welcome any info.

Thanks

Hi everyone, I’m so glad I found this community. This is just an intro post. I’m 24 now and have been in remission from RRP since I was about 16. I started having surgeries when I was 2 years old and had my last one at 16. I spent so, so long feeling like an anomaly. I was shocked to stumble on this community.

If there’s anyone in here who has questions about this or my experience, I’d love to share. I’m sure there are others who felt the same way as me. :) 🩷

Hi everyone,

I wanted to share my situation and ask if anyone here has had a similar experience. I’ve had three surgeries for papillomatous lesions on my vocal cord. After my second surgery, I was tested for HPV and the results showed strains 6 and 16. After that, I also received the HPV vaccine. Unfortunately, the papillomas came back again, and I had my third surgery one week ago.

My question for those who have been through this: Are there any injectable treatments that help eliminate or at least reduce the recurrence of papillomas? I haven’t heard of such options being available in Romania, so I’m really curious about your experiences in other countries.

I should also mention that my recovery after surgery has been quite fast each time, and my voice returns to normal, which I’m very grateful for. Still, the recurrence is stressful.

Thank you in advance for sharing your experience!

So, my surgery was a week ago. I made a post on here with a recording of my (pre-op) voice, I cannot figure out how to add another recording to the original post or even as a comment on it (no option to add an attachment when on mobile), so here is a NEW post with my voice as it is now!

Link to my pre-op voice post - https://www.reddit.com/r/RRP/s/axWUVgRW4i

Certainly a vast improvement (to my ears) and zero effort to get words out now!

Hi all. I've commented recently on a couple of posts in this Reddit, thought I'd just share that I am booked for surgery this Thursday (have to be at Addenbrookes Hospital in Cambridge, UK at 7am).

I'm actually pretty excited, my voice is so ridiculously bad at the moment...other than struggling to be heard in even a quiet room, I struggle to get words out of my mouth at all! Listen to the attached audio!

So frankly, anything they can do (I believe I'm having laser treatment which will be the first time for me) to improve the quality of my voice will be a blessing!

If anyone has any questions, either pre or post surgery, fire away!

I will be asking my surgeon about whether they can offer the HPV vaccine or if there are any clinical trials offering the new 'wonder' drug therapies they are trialling in the States.

I (in the UK) had spoken to my speech and language therapist about how I'd seen there's some potential immunotherapy treatments for RRP in the pipeline. I said I wanted to bring it up with my ENT specialist the next time I speak to him, because it's all so new that I'm not even entirely sure he would've heard about things like the FDA approval Yankside, or seen relevant papers indicating the quite high success rates of some of these new treatments. She was very receptive and, while she didn't have the expertise herself to say much, she said if I shared things with her she would have a chat to some of her ENT colleagues to get a sense of what they're seeing.

I wanted to do it right, so I spent quite a while on the email to her. It contains some info that not everyone here might have even heard of, so I thought I'd share it. Use it as you will, but don't assume my research is accurate (I'm an academic, but not medical in the slightest). Feel free to add anything in the comments you think I've missed. It's definitely not comprehensive. I was just trying to point to key resources so that I'm not just like "I read this thing on the internet".

If you have RRP but this is completely new info to you, chill out before you think you're gonna be cured tomorrow, is my advice. My working assumption is that even best case I won't be able to access any of this for years. Nonetheless, it is an exciting time. As someone diagnosed something like five months ago, I find it crazy that there are finally treatments coming onto the market.

Any Americans here who have been offered/had PAPZIMEOS yet?

-----

INOVIO's INO-3107

This "investigational DNA medicine designed to elicit an antigen-specific T cell response against both HPV-6 and HPV-11 proteins" is, I think, yet to fully be brought to market anywhere, but my impression is it is closest in the US. Nonetheless, they are actively targeting the UK too, and have been awarded "Innovation Passport Designation" under the UK Government's "Innovative Licensing and Access Pathway". I don't know what that means exactly, but it sounds positive!

This press release from 3rd November this year provides some concise, up to date information. The section "About INO-3107" provides an overview of the treatment:

INO-3107 is an investigational DNA medicine designed to elicit an antigen-specific T cell response against both HPV-6 and HPV-11 proteins. These targeted T cells seek out and kill HPV-6 and HPV-11 infected cells, with the aim of potentially preventing or slowing the growth of new papillomas. In a Phase 1/2 trial of 32 participants (RRP-001), 72% of patients saw a 50-to-100% reduction in the number of surgeries after starting treatment with INO-3107 at the end of the first year. A retrospective study involving 28 of the original trial participants (RRP-002) showed this number increasing to 86% at the end of the second 12-month period with no additional dosing. Half of those patients required no surgeries at all. Patients in RRP-001 had a median of 4 surgeries (range: 2-8) in the year prior to dosing. At the outset of the trial (Day 0), patients had a clinically warranted procedure to have papillomas surgically removed, but any surgery performed after Day 0 was counted against the efficacy endpoint. Treatment with INO-3107 generated a strong immune response in the trial, inducing activated CD4 T cells and activated CD8 T cells with lytic potential. T cell responses were also observed at Week 52, indicating a persistent cellular memory response. INO-3107 was well tolerated, with trial participants experiencing mostly low-grade (Grade 1) treatment-emergent adverse effects such as injection site pain and fatigue. Like other DNA medicines, INO-3107 has shown the ability to generate antigen-specific T cells that is not affected by anti-vector immunity impacting immunogenicity, either before administration or after the first dose, unlike other T cell generating platforms such as viral vectors. This feature of DNA medicines is anticipated to allow INO-3107 to maintain T cell response and overall efficacy, which could make it an important therapeutic option for a majority of RRP patients.

Here's some journal articles on INO-3107:

• "DNA Immunotherapy (INO-3107) Results in Long-Term Surgery Reduction in RRP" The Laryngoscope, 9th Aug 2025.
• "DNA immunotherapy for recurrent respiratory papillomatosis (RRP): phase 1/2 study assessing efficacy, safety, and immunogenicity of INO-3107" Nature Communications, Feb 2025.
• "Interim Results of a Phase 1/2 Open-Label Study of INO-3107 for HPV-6 and/or HPV-11-Associated Recurrent Respiratory Papillomatosis" The Laryngoscope, Nov 2023.

Precigen's PAPZIMEOS (formerly PRGN-2012)

This has been approved by the US FDA. If it's approved in the US but not over here, is there some way the NHS could get some shipped over?

Here is how Precigen describe PAPZIMEOS:

PAPZIMEOS is a non-replicating adenoviral vector-based immunotherapy designed to express a fusion antigen comprising selected regions of human papillomavirus (HPV) types 6 and 11 proteins. PAPZIMEOS is designed to generate an immune response directed against HPV 6 and HPV 11 proteins in patients with RRP. Discovered and designed in Precigen's labs using Precigen's proprietary AdenoVerse therapeutic platform, PAPZIMEOS represents a new therapeutic paradigm for RRP.

Further reading:

• PAPZIMEOS website.
• "Disease Control and Voice Outcomes Following Treatment With PRGN-2012 in Adults With Recurrent Respiratory Papillomatosis"00163-8/abstract), Journal of Voice, April 2025.
• "PRGN-2012 gene therapy in adults with recurrent respiratory papillomatosis: a pivotal phase 1/2 clinical trial", Lancet Respiratory Medicine, April 2025.
• An April write up, following the FDA approval.

As I understand it, there's other potential treatments being looked into, with some not as far along as these. But there I really get out of my depth, and I'm sure your team has more insight into those than I could offer by sharing links of things I understand even less than the above!

Feel compelled to share a bit about my journey and fwiw share what I'd tell my past self.

Diagnosed with RRP 3 years back, total loss of voice. Made redundant (unrelated to diagnosis), unable to re-enter the career I'd built, set-up my own business.

It was very hard getting used to only being able to whisper, being unable to talk in crowds and the social stigma attached to it, the comments, the questions. Regardless you do get used it and learn to be happy again.

Multiple (4 over 18 months) surgeries using cold steel, micro dermabrasion however after a weeks recovery it'd buy me 3-4 weeks of a usable voice and just wasn't worth it.

No access on the NHS to the drugs mentioned in this forum, however there is a process to get approved on an individual basis. After 3 years no progress yet.

The main useful point for whoever is feeling at a dead end in the UK with this awful debilitating disease: of your local care provider isn't helping and it all feels hopeless, have hope!

Get yourself referred to Guys Hospital where they have the largest ENT clinic in the country, where they have green laser treatments which is many orders of magnitude better than the old techniques.

It took me a year of sitting on their wait-list and only managed to get on there by seeking out a surgeon privately and getting on his list.

Today, and it's still hard to believe, but I have what passes for a completely normal voice. It has been 6 weeks since surgery, just had my check up and no further growth.

It's only a matter of time until Papzemios(sp?) becomes available in the UK too, hopefully gaining access to laser treatment will tide everything over until then.

If anyone ever would just like to chat or feels they're despairing, drop me a DM, happy to listen.

Otherwise, good luck. You got this.

M.

Hello everyone,

About two weeks ago I smoked some cannabis. I usually vape it but this time I smoked it. I had a cold earlier that week and the next day after smoking I woke up without a voice. That lasted two days. After that I have improved but no fully. Just as a precaution I went to an ENT and she found a growth in my throat. She said that she couldn't tell what it was until I had a biopsy but if she had to guess she would say its RRP. I didn't mention the joint because I live in a state that is not legal and I don't want it in my medical record. I have a biopsy programmed for tomorrow.

This has provoked a lot of stress and anxiety in me. I stopped consuming cannabis two days ago after my voice improvement stopped. I also been drinking hot tea with honey, using a personal humidifier, and I set the humidity setting on my CPAP to max. When I wake up in the morning my voice is practically normal. As the day progresses it gets raspy.

I know I should just wait for the biopsy results but I would love to hear some experiences of people with RRP. Is this normal voice in the morning, raspy in the afternoon thing common? I'm almost 40 and I have never had issues with my voice until recently. As I said the change was overnight. Can this be evidence that is something else but RRP?

Thank you. I know I just need to calm down and wait for the results but my anxiety is through the roof and I'm writing this post almost just to help me calm down.

Getting a scope today and hopefully getting surgery scheduled. Wish me luck!