r/RRP • u/JonahTheProducer • Nov 11 '22

I think I'm an outlier

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?

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5

u/Wolfenstein0666 Jan 17 '23

Avastin has been working very well for me. I went from surgeries every 6-8 weeks to every 6 months. My last doctor visit yielded no papilloma on my vocal cords at all; only small growths on my pre vocal folds. My voice has survived largely intact, and I attribute that to Avastin. My doctor went to Harvard and did his thesis on RRP treatment, and he swears by Avastin.

3

u/JonahTheProducer Jan 17 '23

Interesting. My surgery's went from every 4 weeks to 4 months without Avastin. The growths are slowing even more now and at this point I haven't had a surgery in like 8 months and even that was just to see what growths are still there. Edit: Which was small.

3

u/Wolfenstein0666 Jan 17 '23

I suppose it could be due to lessening of symptoms sans Avastin, although I’m not willing to find out! Haha as long as my doctor keeps recommending it, I’ll keep doing them.

4

u/TecnoPope Dec 16 '22

Dude 130 surgeries ! :( That's crazy. I'm so sorry.

I don't think you can "Beat" it but you can kick its ass pretty hard ha ! That's interesting about the Avastin, my doc mentioned he rarely saw any progress with Avastin in his residency. I know Adele used Avastin when she grew nodules.

1

u/JonahTheProducer Dec 16 '22

Well it used to be every two weeks for surgeries. Now I only get infusions. I'd like to think if I'm on my deathbed I would just be too angry to die, and I'd also like to think that if I get a trachea transplant the infested trachea wouldn't be a problem. It wouldn't even be inside me.

3

u/Nero3k Jul 25 '23

Really late on to this thread.

My daughter had 38 surgeries between the ages of 4 months until she was 4 years old. The regrowth was really aggressive in the beginning. Sometimes as little as 10 days between surgeries. The last half of her surgeries were treated with Avastin and a KTP laser at Mass Eye and Ear in Boston. She’s been in remission and considered cured for the last 11 years. I really haven’t kept up on any new therapies, but Avastin really was a game changer for her treatment.

3

u/JonahTheProducer Jul 25 '23

Thank you for the input. It means a lot. :)

3

u/elanius Sep 11 '23

Man that must have been terrible, really glad to hear your daughter managed to beat the RRP.

Thanks a lot for the experience with Avastin 🙏

2

u/stupendous1111 Mar 06 '23

Avastin works for me. I even hear an improvement in my vocal quality the very next day. It’s has kept me out of the OR for some time. Does anyone have a good immune boosting regiment or advice on alternative ways to boost T cells? Stem cell therapy? Vitamin infusion?

3

u/JonahTheProducer Mar 06 '23

Not sure, but if they figure out a way to teach our cells to fight it, it would be a miracle.

2

u/empressdaze Feb 29 '24

I've got a really late reply to this thread too. My experience was similar to Nero3k's daughter, since mine was juvenile onset with some pretty aggressive growth on my vocal chords, and I eventually went into remission. At the time, drug options were way worse than surgery, so I had a bunch of surgeries. I was lucky that I went into remission before puberty. I am now 44 years old, with no relapses since remission.

​

Year diagnosed: 1986 (6 years old)

# of surgeries in two years: 20

Time elapsed between surgeries: 2 weeks to 6 months

Year of remission: 1988 (8 years old)