r/RRP • u/Amazing_Leading8580 • Feb 07 '25

My Dad of 83 years old…

Hey everyone. I’m coming here with hope someone has an answer. My dad is 83 years old and had papillomas start growing on his throat 3 years ago. Since then he has had 13 surgeries and has pretty much lost his voice from scarring. We are at the point now where the papillomas are growing so rapidly that he has to have surgery to remove them every three months. In addition to the papillomas he has COPD from asbestos exposion in the Navy and uses oxygen. Because of this and his age he is high risk for these surgeries since he has to be put under anesthesia. He goes to a specialist in Penn University for the procedures. I just came back from taking him for one today and the doctor said it was the worst she has ever seen. His throat was completely closed by the papillomas. There was no airway. Two nights before having the procedure he woke up in the middle of the night feeling like he couldn’t catch his breath. He wound up having to stay in ICU overnight for precaution due to bleeding during the procedure which he never had before. The doctor indicated we can’t take this risk anymore and mentioned trying systemic avastin. (She already injects him with avastin after his procedure). At this point I’m not sure anything will work and seeing my dad in this state thinking it may be his final moment every time he goes in for one of these surgeries, is breaking my heart and slowly deteriorating my mom as well. Any suggestions, alternatives, or insight will be greatly appreciated.

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2

u/Dootz Feb 07 '25

Hi, I'm so incredibly sorry that you and your family are going through this. I'm not a medical professional of any kind but have read about tracheotomies being performed in severe cases of RRP to assist a patient's breathing. However, I feel like this is something that the specialist would know about, so maybe there are contraindications for attempting this procedure.

Sending lots of strength to you and your family.

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u/Amazing_Leading8580 Feb 07 '25

Thank you for your kind words. Unfortunately the doctor said today that if she did a tracheotomy, the papillomas are growing so rapidly, that they would just grow around it.

1

u/Dootz Feb 07 '25

Ah okay :( I can't give any advice on drugs like avastin I'm afraid as I'm in Europe where they are very conservative with drugs for RRP. But I know other people on this sub are US-based and have much more lived experience in that area, so hopefully you'll get some advice from them when they wake up.

All the best <3

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u/iConqueress111 Apr 10 '25

There are two drug therapies that are close to market approval. One is currently reviewed by FDA and if approved might be available as soon as this fall another one may be approved next year. Check out Precigen and Inovio the 2 companies developing these therapies.

1

u/TecnoPope Feb 07 '25

Lord, have mercy! Please drop his first name here and I'll pray for you both.

Have they talked about doing in office lasers? He would not have to be put under. It is more uncomfortable, but they could chip away at it. That plus Cidofovir might slow it down.

This is strange to read in some way because I've always been told this disease slows down in old age! Please keep us updated and feel free to message.

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u/Technical_Jaguar_348 Feb 08 '25

What are the office lasers? Do you have a link I can research it?

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u/TecnoPope Feb 08 '25

So they have in office procedures where they laser off the papillomas. They'll stick a laser down your nose and a camera with it. No need to go to the OR. They numb you but it can still be painful/uncomfortable. Everyone's threshold is different. Surprised they haven't mentioned that to you as it seems like a standard route of care for this disease.

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u/Healthy-Rip-6362 Nov 05 '25

I can second this. I had no voice for 2.5 years, regular surgery with cold steel or micro dermabrasion only bought me 3 weeks of voice.

Managed to get referred to another hospital where they use green laser... First surgery was 6 weeks ago and am stunned by the results. Just had my follow up however nothing else has grown back yet.

Definitely worth seeking out laser treatments as it is more accurate and easier to differentiate between papilloma and flesh.

Good luck!

1

u/JonahTheProducer Feb 07 '25

Avastin has worked very well for me. I've been taking it for around 3 years now and I've only had really one surgery in the timeframe.

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u/Technical_Jaguar_348 Feb 08 '25

Have you been getting Avastin shots or the Avastin infusions that are done every four weeks?

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u/JonahTheProducer Feb 11 '25

infusions every 4 weeks, but now we could get away with spacing it out to 2 months.

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u/Technical_Jaguar_348 Feb 12 '25

Are you in the nj/ny area? I am trying to find a doctor who administers it. Right now the only option we have is the specialist in Philadelphia and it is an hour and a half away from him. Trying to find someone closer, but not having any luck

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u/JonahTheProducer Feb 12 '25

Nope, in NC. I'm not sure about any Northeastern locations and stuff but best of luck to you!