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PVL #199517
11-25-2019 05:49 AM
11-25-2019 05:49 AM
Joined: Nov 2019
Posts: 1
P
PAD Offline OP
Member
PAD  Offline OP
Member
P

Joined: Nov 2019
Posts: 1
Good Morning, I am new to the forum. I have recently been diagnosed with PVL. I have stage 1 precancerous. Has anyone had it removed at this stage or just monitored? Right now I’m being monitored every 3 months. Also was wondering what worked for the pain you experience in the mouth daily. I am open to home remedies. I’ve read an anti inflammatory diet and taking probiotics. Was wondering if this helped anyone. Thank you so much for any input.

Re: PVL [Re: PAD] #199518
11-25-2019 08:48 AM
11-25-2019 08:48 AM
Joined: Feb 2015
Posts: 64
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 64
Boston suburb
Oral cancer only hits about 1/10 of one percent (if my math is off, please correct me) and from what I've just read, PVL is also quite rare and highly likely to turn cancerous.
My cancer started with leukoplakia but I never heard that it was PVL. In your case, if you didn't hear anything about HPV, then my best guess is that you will need to avoid alcohol (and smoke in either case).
Find an MD who is expert in leukoplakia. It sounds that you have a realistic risk that this will turn to oral cancer.
I've tried to sent you a private message but I couldn't.

Last edited by tlc356; 11-25-2019 08:54 AM.

SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: PVL [Re: PAD] #199520
11-26-2019 07:45 AM
11-26-2019 07:45 AM
Joined: Jun 2007
Posts: 10,409
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
Welcome to the Oral Cancer Foundation, PAD! Im sorry you have a need for assistance with your rare medical condition!!!

The illness you have PVL, is known as Proliferative verrucous leukoplakia. Im very sorry, there isnt much info on our site about your condition. Being that OCF is an organization that promotes only scientifically proven medical info, its very unlikely you will find answers to your questions here. Our site is the largest oral cancer public message board devoted to anything/everything to do with oral cancer regardless of where the tumor is located (base of tongue, side of tongue, tonsil, cheek). Unfortunately, 98% of our active members are here about cancer, not any of the numerous possible pre-cancers or other ailments OC patients could have. Im sure it must be very frustrating trying to find info about your illness when it is such a rare disease. Since the majority of our members are here to discuss oral cancer (OC), its unlikely many will have been down a similar path as you are on. This has been inquired about a couple times in the past few years and Im sorry to report we dont have many here with experience in this very specific rare condition.

I did a quick search and found a reliable government site that might have something helpful? At least I hope it can help. You may need to ask your physician for other places you can obtain the info you are seeking. Heres the link to the website I found....

NIH rare diseases

Best wishes with everything!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: PVL [Re: PAD] #199536
11-29-2019 03:13 PM
11-29-2019 03:13 PM
Joined: Aug 2014
Posts: 6
Greenwood, Indiana
D
dadofthree Offline
Member
dadofthree  Offline
Member
D

Joined: Aug 2014
Posts: 6
Greenwood, Indiana
Hello PAD,

I have been down this path that you are on. It has been a 9 year journey and 5 CO2 ablations that has progressed to carcinoma in situ that I am getting excised this week. There are a few things I have learned:
a) The grade doesn't really matter, as people cannot really agree on classification. I started with severe dysplasia that was removed, then multiple moderates. These all have the potential to change to SCC.
b) It hurts and I haven't found a solution to it. Over the years, I have gotten used to it.
c) You will need to stay on top of it. I have been monitored closely during that time. My last check with my doctor was 2 months ago and then a sore that wouldn't go away.
d) I haven't gotten an answer of "how do I manage it?" and "how do I prevent it?"

I'm sorry you are dealing with this condition. You learn to stay on top of it.


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