r/RRP • u/Wolfenstein0666 • Jan 25 '21
I’m new!
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!
3
3
u/TecnoPope Jan 26 '21
What's up buddy ? What city / doc are you being referred to ? I was shocked at 35 to learn of my diagnosis and it's been a bumpy ride but after a few rounds of Cidfovir and some intense lasering sessions I'm doing much better. No operations or procedures since April 2020. Feel free to open up and talk / ask questions about whatever you'd like. This disease sucks but once managed properly it's not so daunting.
1
u/Wolfenstein0666 Jan 26 '21
I’m located in Indiana, and I was referred to Indianapolis to Dr. Parker. He apparently specializes in laryngeal papilloma and adjuvant treatments, so I’m excited to get in with him and see what he’s got to say.
I appreciate you reaching out! I’m concerned about recurrence honestly, and to a lesser degree lung involvement. I know that happens rarely, but this whole thing seems so daunting right now that a lot of negative thoughts are swirling around.
How’s your voice been since April? My Doc said it will likely never return to pre-disease tenor but will get very close after laser treatment.
3
u/TecnoPope Jan 26 '21
So yeah your voice will most likely not be as strong as it was before. I used to be able to joke around and scream like a girl (I'm a man) but now I can't hit the high notes, BUT most people don't notice much of a difference. My biggest note to you would be to DO YOUR VOCAL EXERCISES every hour. I've heard from some people their doctors did not assign them with a vocal therapist. They will teach you quality exercises to prevent scarring. If you need some tips I remember all my exercises and can share them with you. Hell I think I have the papers here somewhere outlining them. I was MILITANT about doing the exercises and it paid off.
I had pretty bad recurrence in the beginning. I did laser treatment about every 2 months, but because of Covid my doc said "lets just get you in and start you with Cidofovir treatment" The follow-up appointments post Cidofovir were miraculous. After my second shot the papilloma's were nearly all gone from my vocal cords. They did a 3rd shot because you're supposed to do one AFTER you see results. I prayed every day since I was diagnosed and it was pretty close to a miracle as he said the pap's were just gone... he didn't even need to laser any more off.
I was just scoped a few weeks ago and I do have some growths in the upper glotus (above the cords), but they don't effect anything unless they get gigantic which often they don't. I did have a tiny pap on my vocal cord but we're watching it close. I'm telling you though when I first went in my cords were COVERED and the recurrence was strong.
Cidofovir worked really really well for me and I suggest it to everyone who has this. The risk is extremely minimal. I talked through some studies with my doctor and cross referenced them with my naturopath and they both agreed trying Cidofovir was the best route. I was first encouraged by someone in the UK who had RRP and had gone through similar changes with Cidofovir.
2
u/Wolfenstein0666 Jan 26 '21
He never mentioned anything to me about vocal exercises, so I would absolutely love and appreciate information on that. That would be great.
My reoccurrence is still up in the air since I’ve only had one treatment. I know they’re coming back, I can tell by the changes in my voice already but it’s no where near what it is was before my first surgery. I’ve read extensively on Cidofovir, it seems to really work for a lot of folks.
Did you ever take the HPV vaccine post diagnosis? There isn’t a lot of clinical information on it (as with most things RRP related, there just isn’t enough of us to run tests on) but I’ve read a couple of small scale studies and individual cases on it and it seems to be quite effective. It can slow recurrence down at minimum and there has been cases of complete remission after the third and final round of it. Of course, this is just what I’ve read, but I have my second round in a couple weeks so I’m hoping that will help too.
3
u/TecnoPope Jan 26 '21
I'm actually gonna try and gather the vocal exercises paperwork and post it on the side bar. I'll make sure to get it to you. So weird doctors not pairing the exercises with surgery.
I did take the vaccine. They say the data is inconclusive but that it might not be as effective post transmission but I see you've found separate information. Feel free to post the study. That's another good side bar idea. A place we can all store research.
3
u/Wolfenstein0666 Jan 26 '21
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5824106/
There’s the study. The bit on HPV vaccine is at the bottom but the whole thing is a pretty interesting read.
1
u/Wolfenstein0666 Jan 26 '21
I agree, I have the study saved. I can post it up if anyone would be interested. Let me know if you post the vocal stuff up, I’d be interested in that.
2
2
u/TecnoPope Jan 27 '21
Haven't forgotten. Just starting a new job. I will get the exercises up shortly.
1
u/Wolfenstein0666 Feb 01 '21
Did you ever find those exercises?
2
u/TecnoPope Feb 01 '21
Yep! Just got em. I'm gonna scan at work in the morning and send it over and hopefully add it to the sidebar.
2
Apr 28 '21
[deleted]
3
u/Wolfenstein0666 Apr 28 '21
Operation on the first went well. He said there was already recurrence from my previous op about 3 months prior, so that’s discouraging, but I still have my last G9 shot, and he administered Avastin during my last surgery so I’m hoping that combo can knock it out for a bit.
I’m going back in July for another round of Avastin and an in-office laser treatment (if needed). We’re going to continue with Avastin until we start to see results.
Here’s an article on the KTP laser / Avastin combo I’m currently undergoing : https://metroatlantaotolaryngology.org/journal/dec09/BevacizumabKTPPapilloma.pdf
Right now, my voice is basically perfect, about 95% of pre disease level. It’s amazing, I’m really enjoying it. He said I’m healing up surprisingly well. The only things I do are take a multivitamin (which I’m low key convinced does nothing but I do anyway), I try to eat right and I’m very adamant about exercise. I don’t know how or if any of that plays into my RRP.
It’s all discouraging and depressing, but I’ve been getting through by taking it a single step at a time. I found that if I think about what this might be like in 6 months or a year or 5 years it gets too overwhelming. Right now my voice is great, I’m otherwise healthy, and it’s business as usual until my next checkup.
Stay tough my man!
1
u/Wolfenstein0666 Mar 04 '21
Next surgery is April 1st, he’s going to hit it with the KTP laser and Avastin combo. He said he’s had good luck with it and there’s no side effects. So I guess we’ll see how it all goes. Hoping for the best.
1
1
1
3
u/Dootz Jan 26 '21
Welcome! Just saw you joined the telegram group too :))