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Re: PVL [Re: vamsee] #199743
02-01-2020 08:43 AM
02-01-2020 08:43 AM
Joined: Nov 2019
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PAD Offline OP
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I wish you the best with dealing with this. I’m slowly coming to terms with it and figuring out what I can and cannot have. I never smoked a day in my life I’m 59. I decided to stop alcohol all together. I only drank socially but, felt if this will help why not! Eating is a challenge as the best food with no pain is pasta, and soups. I bout an instant pot and most of the time the food comes out very soft and tender.
I’m nervous as I see my pathologist on the 14th. For a recheck. Im on an every 3 month check.
I’ve babbled on but, please know I am thinking of you and try to stay positive! I babysit my granddaughter 5 days a week and I won’t let this interfere with my true happiness I have when I’m with her.
Stay well and I will check back after my appointment.
Sincerely
Peggy

Re: PVL [Re: MST] #199744
02-01-2020 08:47 AM
02-01-2020 08:47 AM
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PAD Offline OP
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Hello, I’m sorry you are dealing with this . I’m recently diagnosed with PVL. How did they remove the leukoplakia once a year? And, who performed the procedure? Dentist, ENT ...,?
I wish you well and hope you can find comfort.
Thank you
Sincerely
Peggy

Re: PVL [Re: ChristineB] #199745
02-01-2020 08:52 AM
02-01-2020 08:52 AM
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I’m so sorry I didn’t respond sooner. Thank you so much for your time and kind words. Finding a few people who have this so, slowly getting information. This site is very helpful. I check in every so often to see if there is any new news.
Thank you
Sincerely
Peggy

Re: PVL [Re: PAD] #199914
03-07-2020 11:59 PM
03-07-2020 11:59 PM
Joined: Mar 2020
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Posts: 1
Hello.

I was just recently diagnosed with PVL too and am getting checked every 3 months. I am pretty scared...


bye
Re: PVL [Re: PAD] #199915
03-08-2020 03:06 AM
03-08-2020 03:06 AM
Joined: Aug 2019
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MST Offline
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Posts: 16
Hi,

Apologies for the belated reply.

A stomatologist removed the lesions.

I had my teeth cleaned every 6 months by my dentist, who kept track of the lesion growths.

I would suggest getting the suspect areas inspected by a specialist every quarter. Do mot wait on this.

Hope you are doing well

Re: PVL [Re: MST] #199923
03-09-2020 03:57 PM
03-09-2020 03:57 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline
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I’ve had it removed by ENT/head and neck surgeons. It’s certainly an annoying disease. It’s really frustrating that there’s no consensus nor stuff you can take for it. I have researched and researched and have gotten multiple opinions.

Just frustrated that the tongue isn’t as mobile after the last removal (it had progressed to carcinoma in situ and all left lateral tongue) and now I have another spot...

Good luck.

PVL, leukoplakia treatment [Re: dadofthree] #199948
03-13-2020 09:45 AM
03-13-2020 09:45 AM
Joined: Feb 2015
Posts: 92
Boston suburb
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tlc356 Offline
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Boston suburb
I recently had Dana Farber look at another developing spot of leukoplakia. There is discussion of a planned treatment to use a drug used for skin cancer (I believe it is Fluorouracil). I understand that this is new and has not been done much if at all in the past and is not suited to many surfaces, but in my case they will use something (I believe it is a dental dam or similar) to keep the drug in contact with the tissue.

Some people may wish to ask their medical providers what, if anything they have heard of this.

Please note that I don't know more details at the moment, and will provide more when I get any.


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

TLC356
Re: PVL [Re: fancyBird] #199956
03-19-2020 03:04 AM
03-19-2020 03:04 AM
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Im sorry you are having to deal with this. I just had my 3 month check and all is the same. So, that is good news. Plan is biopsy every year. For some reason I have been developing yeast infections in my mouth to add to the pain. Has anyone else have this issue.? Periodically I have to be on a 10 day med to get rid of it. I’m getting used to the pain and finding food that doesn’t irritate!
Best of luck to you all! Stay well!
Peggy

Re: PVL [Re: dadofthree] #199957
03-19-2020 03:08 AM
03-19-2020 03:08 AM
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PAD Offline OP
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Hello, can I ask how long from being diagnosed to it turning to cancer? We’re you ever precancerous for awhile? So sorry you are dealing with this. It is difficult at times and frustrating as to the lack of information. Thank you for any input.
I wish you well!
Peggy

Re: PVL [Re: PAD] #200006
03-31-2020 04:15 AM
03-31-2020 04:15 AM
Joined: Feb 2015
Posts: 92
Boston suburb
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tlc356 Offline
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Boston suburb
Peggy: Regarding your question of "how long", when first diagnosed with leukoplakia it took several years before it went to cancer (and it was always called, in my case, leukoplakia-I first heard of PVL from you). If your experience is like mine, steady monitoring with any necessary remedial work will keep it under control. My leukoplakia was first diagnosed late in the last century, maybe 1998 and the first cancer was found in 2003.
Unlike you, I've never experienced any mouth pain (except after the 2015 operation, of course).


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

TLC356
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