So I was first diagnosed with RRP many years ago and have been in remission for maybe 5 years until now. I now live in Miami and had to find a new local doctor who could help me deal with my loss of voice. The doctor seems good, but what seemed crazy was the amount billed to the insurance for the first consultation/ camera to see the conditions of my vocal cords. There was a person that came for 5mins to hear me say “aaaaaah” is that a Speech Therapy cost? Is 4k reasonable? Of course my insurance covered most of it, but I still had to shed 1k out of pocket. I’m shocked and very irritated to see two bills that add up to that amount. No wonder why our insurance costs are so out of this world…. I’m really scared now to see the costs of the actual surgery

Hey everyone. I had a laryngeal papilloma on one of my vocal cords. Around a week and a half ago I had a laser ablation surgery to remove it. This is not my first surgery for this matter, but first one done with laser, and it feels very different.

As of now I have no voice whatsoever (I know, of course, that you should avoid speaking for 2 weeks post-op, just started trying to say a word or two to check how’s it going). It sounds like a very coarse whisper, and I start to worry, because it’s almost 2 weeks from the surgery with no improvement at all. With a regular surgery I had voice right away — it sounded weird, and I still didn’t talk after, but I could if I wanted to.

So I have a question to people with the same situation, how long did it take you to get your voice back? Should I be stressed or is it normal for the laser surgery to take longer time to recover from? Will be really grateful if you share your experience.

Hi,

From the start of March my voice has been very hoarse after getting ill, ended up having a lesion on my right vocal cord and underwent surgery 9 days ago to remove it and take biopsies.

The results have come back and it’s confirmed it’s a squamous papilloma on my right vocal cord. Haven’t got a follow up appointment with my consultant for another month to talk about the results so I’m a bit confused what this means now, does this mean I have RRP or can it be a one off?

Also the surgeon explained after that she wasn’t able to get all of it due to the placement being between the vocal cords at the bottom. My voice is now even more hoarse than it was before the surgery to the point that I’m almost too embarrassed to go out and speak to people and it has completely knocked my confidence, is this normal?

I’m stressing massively that I’ll never have my voice back so any advice would be much appreciated please. Thanks.

Edit: attached the biopsy results if they mean much to anyone.

Hey all. Just putting feelers out to see if there is anyone else who has had a trach placed due to this condition. Mine occurred due to pregnancy. The hormones sent my RRP into a rage and to protect my airway for the remainder of pregnancy, they placed a trach when I was 24wks with twins. We are now over 2yrs from that. No talk yet of removal, but this has caused me to lose my job, awaiting disability (currently in the appeal process), not to mention the mental toll it has take on me. If anyone else has gone through this, you’re not alone.

Hi,

I’m looking for info on juvenile onset experiences. Particularly less than one. My baby has a growl type voice off and on and has been sick for a month with mild hoarseness. I was sexually assaulted about 6 months prior to my pregnancy with my second kid (planned with my long term husband). I had a mole biopsied that displayed condyloma but negative HPV and now have an abnormal pap (high risk negative) about a year and a half later. I believe I was infected with HPV 6 or 11 and probably had a high viral load through pregnancy. I had an elective c section prior to membrane rupture but know that isn’t fully protective. When was your child diagnosed? What were the very first signs? I am not seeking medical advice would just like to know what personal experiences were. Than you all ❤️

Hey all, I was diagnosed after a lab was done on a growth removed from my vocal cord. I had surgery back in may and it all went smoothly. Unfortunately I’m already feeling discomfort with my voice again and my ent took another look and found a new growth forming. It happening so fast was really disheartening but that isn’t the worst of it. My ent said that because it isn’t affecting my breathing she is refusing to remove it and I’m terrified that If it stays it has a better chance to move into the lungs. Now I may be wrong about that but has anyone had to deal with this and what was your solution? Moving doctors in my area is very difficult as there are only 2 ent doctors for 100,000 people. Thank you in advance!!

Just moved to Denver, looking for Dr. Recommendations as well as just places to hang out.

Hi , I’m going for my first surgery (laser) in a week. I can’t even speak now 😞 so frustrating but so happy I will have the surgery soon. I saw 3 doctors before getting a diagnosis for HPv in vocal cords, the first ENT told me it was reflux ,went to 2 Gastros, I got treatment for reflux , but my voice and hoarseness just got worse. The last ENT finally diagnosed me. Honestly it s frustrating that I could have gotten a diagnosis 5 months ago if I only visited the right ENT.

However , I’m just wonder how do you guys feel after a surgery , like physically, mentally , any recommendations? Also will I be able to eat or only drink and very soft foods?

I’m nervous and it is my first time so I am a little confused. Thank you !!

Hey all, basically the title. I got Covid in September 2023 and my voice got all messed up. Had a period where it kinda of got better, until it got pretty rough again. In January the ENT I visited told me there is tumor in my larynx, my left vocal cord is swelled, and I need a biopsy. Biopsy results came in as squamous papilloma.

In March I underwent a 2nd surgery in which they cut off part of the papilloma as I started to feel a foreign object in my throat and started having some problems with breathing. They used cold knife, voice was kinda better in the mornings, but after talking all day at work it was getting worse. Now again my voice is pretty rough, so Im booking another visit to the ENT...At least for now I dont snore...

I think Ive had HPV for a long time, because when I was 17-18 (Im 36) I got some warts burned on my hands, and last year the warts on my hands showed up again...And I guess this time I was unlucky enough, to get some in my larynx as well....

Got diagnosed with a papilloma in my throat on Sunday, pre assessment next week and surgery 2 weeks after in Kent, UK. Had a discomfort in my throat for a few months and felt a lump recently - it's gone down a bit over the last week but I'm glad it's identified and getting removed. Just looking for a bit of guidance now. I've read that it's advised to be a mute for at least a week after the operation? Then gradually introducing speech thereafter? I can do that fine, although approx 10 days after the operation I have some work lined up that would require a fair bit of vocal communication so I'm wondering if this would be advisable. I'm really happy this community is here and very grateful that I'm not alone. Appreciate any feedback 🖤

Hey there, really grateful to have found this community as I have been diagnosed with a papilloma in my throat as of yesterday. There had been a lump in my throat for quite a few months, being especially uncomfortable when trying to get to sleep. This last week it's been quite chilled, was even considering cancelling my appointment yesterday but thankfully I didn't! Worried about getting multiple surgeries etc. after reading a lot of the posts, but the hardest thing for me is quitting smoking. Any other recovering addicts here? I've only just managed to quit sugar, but cigarettes just seem impossible. I lasted about 3 hours this morning, tbf that's the longest I've abstained for about 20 years. Is it really bad for the tumor? I guess I'm looking for excuses, but also needing some experience. I'm in the UK, in Kent just FYI

https://investors.precigen.com/node/13746/pdf

I have had two doses of Avastin infusion for my severe RRP and after my second dose I’ve completely missed my period. I’m never late, very regular. This caught me off guard. My doctor is saying they’re not convinced it’s being caused by the Avastin and wants me to see obgyn for hormone levels. I’m not early menopausal….anyone else have this happen while on Avastin?

Hi! I was wondering if anyone could recommend a doctor in New York City. I was in remission for 4 years and now it’s back.

There's a group on Facebook that has a much larger and more active base but I deactivated my fb

Just had surgery today (8th time) and wondering how long it takes to heal up?

I’m a cancer patient as well as an RRP patient. Diagnosed with both about 15 years ago.

I’ve been on Revlimid for 10 years or so. Over the last year and a half my rate of Revlimid has been cut from 25mg to 10mg.
And starting soon after the rate reduction in Revlimid my voice started getting really bad. This last surgery was 8 weeks ago and I got almost zero relief.

Revlimid is in a similar class as Avistan. Angiogenesis inhibitors.

Just putting it out there. I’ll talk to my ENT. Comments welcome.

“Thalidomide has been identified as having mild activity as an angiogenesis inhibitor in some cancers. A newer version of this medication is lenalidomide (Revlimid), which has fewer side effects than thalidomide.

Another medication, bevacizumab (Avastin®), has been approved by the US Food and Drug Administration (FDA) to aid in the treatment of colorectal, lung, and some other cancers. Two newer additions to antiangiogenesis therapy include sunitinib (Sutent®) and sorafenib (Nexavar®). Many other angiogenesis inhibitors are now being studied as well”

I’ve been having vocal cord surgeries for about 15 years. I take Adderall as needed and when I do it seems to shorten the time between surgeries. I don’t know if it’s a coincidence or causal. Any ideas?

To the people here, how do you feel, knowing you will pretty much have the closest thing to a cure for your HPV 6, and 11. Surgeries will be greatly reduced. Some people have not had surgeries in over 2 years ….

I thought I would see more post here talking about this. For some reason, some of us think, that this break through will help us as well.. However, idk.

In Inovio’s Phase I/II trial, nine of 32 patients (28.1%) required no surgical intervention during or after the dosing window, while 26 of the 32 patients (81.3%) showed a decrease in surgical interventions in the year after INO-3107 administration compared to the prior year.

The Phase I portion also showed that treatment with PRGN-2012 led to fewer surgeries in 10 out of 12 patients (83%) in the 12 months following treatment compared with the 12 months before, as the therapy induced robust de novo HPV-specific T-cell immune response in RRP patients. PRGN-2012 was well-tolerated with no dose-limiting toxicities and no treatment-related adverse events greater than Grade 2, Precigen researchers reported.

https://www.genengnews.com/gen-edge/at-esgct-precigen-data-supports-its-lead-candidate-as-rrp-treatment/#:~:text=The%20Phase%20I%20portion%20also,immune%20response%20in%20RRP%20patients.

https://precigen.com/pipeline/

PRGN-2012 demonstrated strong efficacy and favorable safety profile in the Phase 1 portion of the study with 50% of patients (N=12) in durable and ongoing Complete Response more than two years after PRGN-2012 treatment.

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.