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Old Tue Oct 8, 2013, 05:38 PM
sherryjac2 sherryjac2 is offline
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Unhappy Chronic GVHD Mucositis Question

I am 15 months post allo transplant and have always had some minor issues with oral mucositis. Last Friday, it flared up badly, requiring me to avoid chewing lest I feel like I was chewing on razor blades. I got some Magic Mouthwash from a local oral surgeon (they actually label it that way...it's a prescription mixture containing lidocaine, etc.) which calmed the pain down, and I have been swishing regularly with Dexamethasone. The only thing that really changed recently was about a week+ ago my transplant doc finally took me off of the last 2 prophylactic antibiotics I was taking...acyclovir and bactrim. I know that acyclovir is used to supress herpes viruses and some of my lip lesions appear somewhat herpes in form. My cheeks and tongue are lined with small painful lesions, not what I would describe as herpes. As a precautionary move, I started taking my acyclovir again, until I can get to see the doc. I also had have some tenderness in my neck lymph nodes and jaw pain. I was examined by an oral surgeon and he saw nothing suggesting oral cancer.

SOOOOO, my questions are [b](1) Is it typical for chronic oral GVHD to flare up without any particular reason post transplant? I thought as it gradually got better it would stay the course, and (2) Has anyone had issues with oral GVHD in the absence of acyclovir? I'd be interested in hearing anyone's experiences with chronic oral GVHD. I know we're all different, but I'd like to get a feel for what lies ahead. In the meantime, my mouth is much better...it seems to be resolving. Whether it's just running it's course or the acyclovir kicked in, who knows. Thanks in advance for any input you might offer.
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Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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Old Tue Oct 8, 2013, 08:19 PM
Whizbang Whizbang is offline
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Hate to use the phrase "new normal", but it's probably the case here...

Things take quite a while to get back to normal (from what I've read), and you need to adjust accordingly...

I've been told that you/we should be gargling with saline solution (salt and water) at least a few times a day as a preventative measure, this in addition to brushing your teeth 2-3 times per day...

A transplant nurse told me that as a preventative measure it works just as well as any other treatment for Mucositis (at least in certain studies)...

Hope this helps, and hope this issue goes away in the future...

All the Best!
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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Old Tue Oct 8, 2013, 09:48 PM
mausmish mausmish is offline
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Sherry,

Every time I try to go off acyclovir, I get a herpes flareup - or perhaps it could be gvhd. I've resigned myself to staying on it indefinitely. It seems to produce no adverse side effects and besides prevacid for reflux, it's the only thing I take. I've been told by the doctors that gvhd might eventually burn itself out or might be around forever. At least it's also graft vs. leukemia at the same time. It could be the new ABNORMAL. I say experiment with the acyclovir and see ehat happens. Also, the dexamethasone might actually be irritating. Isn't that a steroid? If so, I think I tried it briefly and then quit because it made my mouth sore in general.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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Old Tue Oct 8, 2013, 11:55 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Sherry.

Thanks for your response to my post about my 15th BMT anniversary this week. As a kid was I teased about being a "Baby Ruth" (candy bar), but I don't think I've ever been compared to "Babe Ruth"! Wow!

One of the issues that I've been dealing with in the last year or so is a return of my oral GVHD. I had lesions on my tongue like the ones you described but I have never had herpes and haven't been on acyclovir except at the very beginning post-transplant. I was examined by a specialist in oral GVHD at City of Hope and underwent a tongue biopsy to be sure it wasn't some early form of oral cancer. Luckily(!), it was just GVHD. Annnoying and occasional painful, it has been kept under control with Clobetasol gel applied at least once a day and more often as needed.

It was a surprise to be dealing with GVHD again after 10+ years, but when the sores appeared, I recognized them immediately as I've always had a low-grade chronic form of oral GVHD. It also confirmed what I have come to believe and what I've heard from doctors at City of Hope, NIH, and in conversations with other specialists at AA&MDSIF Patient Conferences: GVHD never really goes away. The potential for a flareup is probably always there but the symptoms do tend to lessen as time goes by.

You should, of course, follow up with your doctor. In the meantime, I'm glad the Magic Mouthwash helps you.

Regards,
Ruth
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Old Wed Oct 9, 2013, 10:04 AM
sherryjac2 sherryjac2 is offline
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Talking Misery Loves Company, Indeed...

Thanks to all of you for confirming that oral GVHD may indeed be a partner for life. I know the graft vs leukemia effect is keeping me in remission, so it's a small price to pay, but sometimes I get greedy for the OLD normal, when life was not being piloted by my disease. In the meantime, my mouth is gradually getting better. I may even chew something today!
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Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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