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Saturday, July 20, 2013

When OLP is Cured

Is my Oral Lichen Planus cured? I've been asked. I have to say it is "Cleared" instead. More specifically, since I have been taking the Sprycel prescription for my Leukemia the OLP has cleared up and is minimal at best. I seldom think of it anymore. I have no lesions to speak of. Only a slight bit of lacy stuff once in a while that I only happen to notice because I've made a good search of my mouth. As mentioned before, the only time I had a relapse was when I was taking a proton pump inhibitor for my GERD. As soon as I stopped, it disappeared again.

It's been pointed out to me that my blog has been "inactive". Yes, true. But, that's because my OLP is inactive. But that doesn't mean I have forsaken the blog, nor you readers. This blog gets quite a few hits every day. Therefore, I suspect, it still has it's use in the lives of those searching for information on Oral Lichen Planus.

I'm not planning on closing down the blog at all. I want others to know they are not alone in their diagnosis. I want others to have this record and it's photos to be able to share with others in their lives who don't understand what they are going through. Perhaps, too, some will find my journey a refreshing reminder that no matter what they are going through, they can get through this!

I'm not going to bother to post another picture of my mouth, pretty as it is these days. But, here's an updated picture of how happy I am that my OLP journey is behind me.


In the meantime, anyone who is interested, please know that I am still here and all you have to do is make a comment and I will reply (as long as it is not spam). If you wish to share your story, I can create a place for it in this blog as well. Or, better yet... you can set up your own blog. After all, wouldn't it be nice to find something other than medical jibber jabber and fake claims for cure on all those other sites you come across when searching for information on OLP. It's nice to just know that there are others out here dealing with the same issues and how they are doing. You're not alone.

Stay in touch.

3 comments:

Anonymous said...

Elizabeth,
My 26 year old daughter has also had a long battle with ELP. She was diagnosed at 12 years old but had symptoms prior. She has esophageal/vulvar involvement and now has stage IV oral cancer caused by the constant blistering.
My question is who treated your ELP and witnessed/documented your improvement on Sprycel. I was hoping they could give supporting evidence to my daughter's dermatologist for treatment.

Thank you.

Elizabeth Munroz said...

I am so sorry to learn of your daughter's battle with ELP and especially sad to know of her oral cancer. I was being treated at the University of San Francisco Oral Medicine Clinic by Dr. Vellipellai for many years. When I got the Leukemia, I was given the Sprycel by my Oncologist in my own home town. Within a month my Oral Lichen Planus cleared up and has stayed minimal this last two years while I continue taking the Sprycel. This drug costs $7,000 a month. Unless it is also medically approved for your daughter's type of oral cancer I would be very surprised if getting approval to have her take it to find out if it would quell the ELP would happen. Just one person having this result doesn't guarantee the same for others. What treatment is she receiving? Surgery? Radiation? Chemo? My best to you and your daughter.

Anonymous said...

Hi Elizabeth,
I'm sorry it's taken so long to reply! We've been busy with cancer treatments and complications. :(
She actually had part of her jaw and five teeth removed. They rebuilt it with bone from her leg. She is currently undergoing radiation everyday (26 down,4 more to go!)and thankfully it hadn't progressed to her lymph nodes so she doesn't need chemo.
Her current plan of treatment for the ELP is a combination of accutane and thalidimide. No more immunosuppresants because of the cancer. she actually had a short treatment of Immuran in the past. the docs have tried everything but nothing seems to have worked. The new treatment is expensive. I think the thalidimide alone is about 10,000$ a month. She has been on both drugs separately in the past and now they are trying combinations.
The reason I was so interested in your "success" with Sprycel is upon doing a bit of research into the drug, I found that it doesn't work well while taking drugs for GERD (acid blockers). Your experience of reduced results and a "flare" while on those simultaneously with Sprycel and your subsequent improvement when the acid blockers were stopped, pointed more toward Sprycel being the cause for your "remission" ( at least in my uneducated mind :)
Since this is literally a life and death thing now, I will bring your results and experience up to My daughter's team of doctors. Perhaps it is an idea they can "keep in their back pocket " for future use.
Did your Derm doctor ever see your improvement/ remission?
Thank you so much for sharing your story. Who knows, your experience may be the breakthrough the ELP sufferers need. I don't know how many times I heard that drugs developed to treat one disease were found to just "coincidentally" improve another and are now standard treatment.
Again, thank you so much for sharing your story! I'll keep you posted if we have any success.



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