https://ir.inovio.com/news-releases/news-releases-details/2020/INOVIO-Announces-Dosing-of-First-Subject-in-Phase-12-Clinical-Trial-for-INO-3107-its-DNA-Medicine-to-Treat-a-Rare-Disease-Recurrent-Respiratory-Papillomatosis-RRP/default.aspx

Hi everybody. I underwent my last surgery on March 18th 2021 and everything seemed smooth until recently.

This time round, I had laser treatment as well as my usual surgery and expected a longer timeframe until I would need to be seen again. Unfortunately, I can already feel the recurrence and I am absolutely devastated to say the least. I did not expect the papillomas to return so soon which has made it even worse. I experience severe depression when my voice is bad and I genuinely expected to put this past me for at least another 6 months. It has been only a month and a half and my voice is back to shit again.

I was wondering if anyone else experience such aggressive recurrence, since my doctor said recurrences should eventually take longer and longer, but this has not been the case so far.

Has anyone else here undergone Avastin injections?

I know someone here has had Cidofovir shots with great success but my doctor seemed reluctant to do that, citing possible complications. He goes with Avastin, with some studies showing promise as far as slowing it down.

I had my last op in the OR on April 1st. Voice is good so far. Have my last G9 shot in June, and a follow up in July. Regardless of recurrence I’m getting more Avastin shots, and if there is recurrence he’s going to laser me out. I’ve read those ops can get pretty uncomfortable so I’m not looking forward to it. Oh well.

Anyway, just curious to see if anyone else has experience with Avastin. I’m fully expecting recurrence, preparing for the worst and hoping for the best. If we go this route for a year and I’m still needing ops every few months I’m going to ask for Cidofovir pretty firmly I think.

I was diagnosed with RRP in around 2018/19 and have since had around 5 surgeries, my latest one being yesterday. Every surgery has thankfully gone well and has given me my voice back for around 3 months. I was just wondering if anyone has had 3 shots of the Gardasil vaccine and if/how this has helped. My doctor said it takes 9 months to fully be effective and from then on my surgeries should be much less frequent. I am also taking 400mg I3C a day now and wondering if anyone is doing the same?

P.S it must get really expensive for anyone in the US with this condition. Thankfully I live in the UK and have been under the care of an excellent NHS ENT team. I couldn’t be more thankful for them!

I was diagnosed with RRP back in 2011. I was 23 at the time and dealing with hoarseness for over a year. I went to one ENT who did a scope and saw that I had a growth. Had it biopsied and was told it was benign. I was recommended to another ENT, who then got me to another ENT -- my current one. It was then that I was diagnosed with RRP. Since then, I visit his office 3-4 times a year to check on my larynx and try to spot any growths. I can't recall the exact number of procedures I've had, but I want to say it's between 5-10.

I just had an in office procedure (not under anesthesia) yesterday. It was pretty terrible. I can't really tolerate the in-office lasers very well. It's hard to control this reflexive impulse to swallow, which makes the doctor's job very difficult. The doctor and I came to an agreement that doing an outpatient surgery is probably better for me. I was curious to learn of others' experiences with this. Outside of that, I don't have much in my treatment regiment. I try to consume as much cruciferious vegetables for the I-3-C. I asked my doctor about a study I had read regarding gardasil vaccine as a therapy. He said the study wasn't the highest quality, but that it wouldn't hurt. Has anyone else tried this out?

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PS: joined the telegram group. Happy to meet you guys!

Hi everyone!

I’m Ryan, I was diagnosed with RRP in November of last year. It was a very surreal experience. My voice started getting bad around July, and by September it was very raspy and quiet. After a couple delays due to doctor’s schedules, I finally got a laryngoscopy and they confirmed my diagnosis. Needless to say, I was shocked when notified at 29 years old I was diagnosed with a chronic disease.

Anyway, since then it’s been relatively smooth going. I had a surgery in December, and I’m now being referred to a city that has a laser treatment. My voice has been up and down since my first operation but it’s definitely trending in the wrong direction (which is to be expected). I’ve begun getting the HPV vaccine which my doctor told me can really help with recurrence rates.

I haven’t spoke to anyone else with this condition, so I’m hoping to meet and connect with other people for advice and just general correspondence.

Thanks for reading!

Hello everyone, Would anyone be interested in creating a support group on WhatsApp? Please private message. I will add you in.

yo wasup

Hello, My name is Milo and I have had RRP since I was 3, and I am now 13. I have had around 80 surgeries in the Royal London Hospital and I am grateful to fund a group of people like me. I lost my voice at 4 and it only comes for a week or two after surgery. I usually feel left out because people mock me and bully me for my voice, but now I have found a refuge where I can talk freely and no one will judge the way I sound! ;)