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PVL #199517
11-25-2019 06:49 AM
11-25-2019 06:49 AM
Joined: Nov 2019
Posts: 11
P
PAD Offline OP
Member
PAD  Offline OP
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P

Joined: Nov 2019
Posts: 11
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 09:48 AM
11-25-2019 09:48 AM
Joined: Feb 2015
Posts: 86
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 86
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 09:54 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 08:45 AM
11-26-2019 08:45 AM
Joined: Jun 2007
Posts: 10,489
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,489
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 specific 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 OCF is probably not the best resource to help you with your medical issue. At OCF, 98% of our active members are here about oral cancer, not any of the numerous possible pre-cancers, minor mouth conditions or any other mouth 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. Besides... what one person experiences will never be the same as what another patient goes thru. Everybody's different is frequently repeated around here! There's far too many variables with so many things that go into the cancer diagnosis, treatment or recovery phases its impossible to ever find 2 people who on paper appear similar but they never are an equal comparison to any other patient. While this specific type of PVL has a higher risk of it becoming OC that does NOT mean every person with PVL will eventually have OC. Hopefully the mass will NOT develop into anything more serious!!!

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 04:13 PM
11-29-2019 04:13 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline
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Joined: Aug 2014
Posts: 9
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.

Re: PVL [Re: dadofthree] #199601
12-16-2019 03:12 AM
12-16-2019 03:12 AM
Joined: Nov 2019
Posts: 11
P
PAD Offline OP
Member
PAD  Offline OP
Member
P

Joined: Nov 2019
Posts: 11
Thank you so much for info! I am learning to cope and getting used to daily pain. You have to be your best advocate. I will continue to be pro active. I am pleased with my Oral Pathologist. She will keep a close eye in certain. Right now I’m on a every 3 month watch. Appreciate your input.

Re: PVL [Re: tlc356] #199602
12-16-2019 03:24 AM
12-16-2019 03:24 AM
Joined: Nov 2019
Posts: 11
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PAD Offline OP
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PAD  Offline OP
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P

Joined: Nov 2019
Posts: 11
I’m sorry it took me so long to reply. Thank you for your response. I have read about HPV possibly being the cause. I’m 59 and have never been diagnosed with it. But, that has not been 100% proven cause. It is a speculation. I am seeing an Oral Pathologist and so far feel confident she is knowledgeable. I will stay on top of this for sure. I appreciate your response.

Re: PVL [Re: PAD] #199604
12-16-2019 10:02 AM
12-16-2019 10:02 AM
Joined: Feb 2015
Posts: 86
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 86
Boston suburb
If you find a need for an expert (for a second opinion for example) in leukoplakia, one of the leading experts in the field works at Dana Farber Cancer Inst. and the associated Brigham and Woman's hospital.

https://hsdm.harvard.edu/people/sook-bin-woo


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

TLC356
Re: PVL [Re: tlc356] #199608
12-16-2019 02:39 PM
12-16-2019 02:39 PM
Joined: Nov 2019
Posts: 11
P
PAD Offline OP
Member
PAD  Offline OP
Member
P

Joined: Nov 2019
Posts: 11
Thank you so much! I greatly appreciate your help.

Re: PVL [Re: PAD] #199669
01-09-2020 09:52 AM
01-09-2020 09:52 AM
Joined: Oct 2017
Posts: 7
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vamsee Offline
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vamsee  Offline
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Joined: Oct 2017
Posts: 7
Hello,

I have been diagnosed by PVL as well. Im female 37 and it started 3 years ago during pregnancy. I also have oral lichen planus and a dry mouth.
So far 2 biopsies have been performed and came back as mild to moderate dysplasia. My lesion is on the lateral tongue
Management protocol recommended was observation every 3 months. I am being seen by an Head and Neck surgeon at a cancer center.

Im very thankful to this forum that i have been able to connect with a few other PVL patients. considering its so rare, not much info available.
My observation, with pain is the pain is not from the lesion as such but I get canker sores around that area. So trying to avoid any irritants has helped.

Thank you,
Vamsee

Re: PVL [Re: vamsee] #199670
01-09-2020 01:32 PM
01-09-2020 01:32 PM
Joined: Aug 2019
Posts: 16
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MST Offline
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MST  Offline
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Joined: Aug 2019
Posts: 16
Hello,

I was diagnosed with PVL 8 years ago. I underwent yearly laser ablations and scalpel excisions of the affected sites. I never had any dysplasia from the mulifocal yearly biopsies. Everything seemed to be under control...But, I developed a periodontal infection near a tooth where the Leukoplakia was present. The tooth was pulled, but the infection never healed and I was eventually diagnosed with SCC.

PVL is an insidious disease that nearly always transforms into cancer. My advice is to be aggressive early on and remove the Leukoplakia lesions on some timeline - mine was annual.

There are several publications that I have seen online that focus on PVL, but you are mostly confined to the seeing only the abstract unless you pay for the paper.

Unfortunately, because it is so rare, there hasn't been much research into it.


I wish you the best.


Last edited by MST; 01-09-2020 01:35 PM.
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