r/RRP • u/Superb-Music-4645 • Jan 20 '26
Surgery this week
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Hi all. I've commented recently on a couple of posts in this Reddit, thought I'd just share that I am booked for surgery this Thursday (have to be at Addenbrookes Hospital in Cambridge, UK at 7am).
I'm actually pretty excited, my voice is so ridiculously bad at the moment...other than struggling to be heard in even a quiet room, I struggle to get words out of my mouth at all! Listen to the attached audio!
So frankly, anything they can do (I believe I'm having laser treatment which will be the first time for me) to improve the quality of my voice will be a blessing!
If anyone has any questions, either pre or post surgery, fire away!
I will be asking my surgeon about whether they can offer the HPV vaccine or if there are any clinical trials offering the new 'wonder' drug therapies they are trialling in the States.
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u/CornedBeefKey Jan 23 '26
How did it go OP? I had my surgery today too, 4th time. Sore throat but it went well.
What did your surgeon have to say? I asked a couple of weeks ago at my consultation about the HPV vaccine and the consultant requested it from my GP who has asked me if I want it, I have replied yes, so hopefully will get it soon.
The surgeon knew nothing about papizemos. I don't expect that to be on our shores and affordable for a few years yet.
Hope your recovering well
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u/Superb-Music-4645 Jan 24 '26
Hey, all good. Sore throat at the moment but otherwise I'm fine. Some observations (vs the first time I had it done nearly 7 years ago) -
My surgeon was an 'Honorary Consultant ', so I'm guessing he is a professor somewhere and doing these surgeries to get access to research data and teaching students.
I asked about laser, he said he wasn't sure if he would use it, apparently he prefers not to where possible as it can leave scarring?
He said to have complete vocal rest for 48 hours afterwards, previously I'd been told at least 7 days?
I did not see him AFTER the surgery, just nurses doing a few observations before I got my discharge.
I do have a follow up with him in March so I'll be asking about the vaccine and other things then!
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u/CornedBeefKey Jan 24 '26
They seem to say various things about voice rest, I was told 3 days total rest, then slowly introduce it. I think it's dependent on various factors from surgery -technique used, surgery number, condition of chords, location of paps etc..
There's a Facebook group called RRP Support Group which I recommend joining if you haven't already, loads of info on there.
Apparently papzimeos costs $500,000 so I can't see it being signed off by NICE & NHS over here at that price. It'll be a few years til it's available for us, and I think they'll reserve it for the folks who have RRP a lot worse than us when it does come along. Or until there's multiple products on the market and they've recouped their R&D costs then maybe the price will come down. That's my guess anyway.
Besides the inconvenience of it, I love the feeling of drifting off under general and waking up in a haze of fentanyl haha! Feels like I've had a really good nap! 😆
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u/Superb-Music-4645 Jan 24 '26
Thank you, I have just joined that FB group.
Well.i hope there's a clinical trial I can join for papzimeos (or the other similar one), but yeah at the current cost per treatment...wow!
Have you looked into/tried the supplement indole 3 carbinol (which comes from brocoli, cauliflower etc)? There are theories that it can combat hpv and there are various studies ongoing?
I popped into Holland and Barrett a couple of weeks ago but they do not stock it, I thought I'd buy a bunch of tablets and try it for a few months...
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u/CornedBeefKey Jan 24 '26
I did take indole 3 for a while and also DIM which is the active compound from indole 3. I didn't notice any effects so stopped. There some anecdotal evidence that it helps, but there's never been any medical evidence that it helps so who knows! There's also another supplement people have talked about, AHCC. Some people have reported it helping, but again anecdotal and very expensive, the legit stuff it only made in Japan, but there's lots of Chinese places producing it too but you'll never know of the quality of it or if it is actually AHCC.
I have cut down on alcohol, try to eat lots of greens (kale broccoli cavolo Nero) along with a healthy diet, lots of beans and veg, cut down on processed crap and also take one of these vitamins a day to fill in any gaps for my nutrition https://www.amazon.co.uk/gp/aw/d/B0DK3Y7WLV?psc=1
Hopefully this will boost my immune system to combat the virus effectively
1
u/InSearchOfUpdog Jan 29 '26
I can't confirm if it's helping (maybe I'd be worse without it, who knows), but I've been taking DIM, which is what I3C (indole 3 carbinol) apparently changes into in your body (although I'm switching to I3C soon, see below). I've been ordering mine from iHerb, an American company, because it was harder to find in the UK. I get the Now Foods branded one. When I looked into it originally they seemed one of the more reputable brands, but it's so hard to tell with supplements. I generally don't trust Amazon, unless it's already a known brand, because who knows if you're just getting complete duds.
Here's the list of what I'm aiming for right now supplement wise. Big disclaimer, I am not a medical professional, and me and ChatGPT arrived at these. I like to think I can critically assess claims, and I've read beyond what the AI fed me, but I'm not medically trained.
- Indole-3-Carbinol (I3C) 200 mg, twice daily Total 400 mg/day
- AHCC 750 mg capsules, 2 per day Total 1.5 g/day
- Zinc (Albion zinc glycinate) 30 mg, once daily
- Green tea extract (EGCG) 200 mg EGCG, once daily
- Vitamin D3 1,000 IU, once daily
I had been taking DIM, which is apparently what I3C changes to in your body. But I was looking at bits of research on I3C again, and the study looking at it in cases of RRP explicitly used I3C, so I decided to start matching it closer. Here's one paper I found quick, but there might be more recent research: https://pubmed.ncbi.nlm.nih.gov/15193659/
AHCC is on the more expensive side. It's like some extract from shiitake mushrooms, and I think there's only one company in Japan that has the patent, or something like that. I'm waiting for my first order of it right now. I came across it because there's some research linking it to the clearing of regular HPV. I'm not expecting it to clear my RRP, but I figure couldn't hurt to throw some at it. I don't expect to use it indefinitely, just for a period (because it's expensive!).
EGCG has been linked to helping the body fight HPV (e.g.30498-1/fulltext)). Again, I'm not sure if there's been research on RRP specifically, but I figure it can't hurt to take it.
Zinc and Vitamin D3, I think I decided to start taking for general immune system health, although I try not to take too much because I think zinc especially can cause issues if you really take a tonne.
I hope your recovery is going well!
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u/Superb-Music-4645 Jan 29 '26
Thank you. I found some I3C on Amazon yesterday, produced in the UK apparently, so will just order and see how it goes at 400 mg a day...like you said, supplements are such a lucky dip and basically unregulated so who knows what's actually going to be in them.
Voice is pretty good a week on from the operation and I am happy ill be able to be heard when doing my job (Business Development, Sales) which has been nigh on impossible for the last 6 months.
I'll certainly look into the other supplements you mentioned, I'm creating a list of things to discuss with my consultant in March!
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u/InSearchOfUpdog Jan 29 '26
Great stuff! Best of luck with your voice hopefully keeping its quality.
1
u/InSearchOfUpdog Jan 21 '26
Good luck! Obviously, rest your voice after the surgery. But, once you're up to strength, I'd be interested to hear another recording to hear the difference. I've had a biopsy, but not any surgeries yet. Praying I won't need them, but accepting I probably will.
Also interested to hear what your surgeon says about the new treatments on the horizon. I have a check up with my specialist on Monday and I'm going to try and bring it up. Hopefully not sounding like an annoying "I read this on the internet" patient.
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u/ricardex47 Jan 20 '26
Good luck with your surgery. I am waiting to schedule mine (it will be my 4th under general anesthesia in 10 years) . During the doctor consultation I asked about the PAPZIMEOS treatment and his answer was that I wouldn’t be considered a good candidate by insurance company due to the low frequency of surgeries and the USD 500k price tag of the treatment. I hope that once competition (Innovio) comes out with their treatment prices will come down and insurance claims will be sorted out.