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Avatar universal

another post-tx question...

Hey guys! Been a while since I posted. Computer got hit by lightning and lost hard drive/memory. Finally found you again! I finished tx July 28, this year. Cleared by week 12 and was still undetectable 3 months post-tx. Will get 6 month heptimax next month. I was reading some of the posts on post-tx sx and was wondering if I am the only one experiencing stomatitis/mucositis? I had to be hospitalized 1 month after tx-gastro thought I had developed esophageal candiasis. He did an endoscopy which came back esophagitis, stomatitis, gastritis, and GERD, but no candiasis. I never had stomach problems before tx. Now, I have inflammation in all mucosa. I am taking Carafate 1 gm daily along with Protonix with not much improvement. I am also, at my primary's request, taking 5 mg of Melatonin every night. Anyone else had this? Would appreciate any advice...

Thanks,
Moonbaby
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Avatar universal
Yes, I have heartburn and nausea. I take Zofran alternating with Tigan when it gets severe. I do have bloating and occasional diarrhea that seem to be directly associated with the mucositis flare-ups. I think the Carafate helps more than anything. I hope you get some answers soon.

Moonbaby
Helpful - 0
Avatar universal
Hi Joanna- Initially, the gastro thought I had a mutated strand of Candida because i was not responding to nystatin, mycelex, or diflucan. 2 oral cultures were obtained, one of which showed normal flora, the other showed candida. When he performed the endoscopy and took a bx of ulcerations, he was certain that I had esophageal candiasis, but bx came back normal flora. Crazy, huh? How were you diagnosed with Candida?


moonbaby


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Avatar universal
Do you have heartburn? Or bloating? Anything else besides nausea, sore throat etc? Did you try Compazine or Phenergan? My doc emailed me and said this in not very common and asked more questions. I hope we can figure this out. LL
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Avatar universal
As you had oral thrush throughout tx have you considered that you may have Candida?
Candida can make you feel extremely ill,burning indigestion, bloating etc.
I suffered with this while on tx and went on a yeast free sugar free diet which I am continuing even now that I have been off tx since February.
Best Wishes
Joanna
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Avatar universal
I was on tx 48 weeks. I was genotype 1a. Biopsy 1 year ago showed II/II. My gastro did a Fibrospect and it showed 76 one month post-tx, which to my understanding, is more consistent with a stage III. That was quite an interesting time, with my husband yelling that it was supposed to have gotten better, not worse, and my gastro in complete confusion... he did an ultrasound which showed "entire liver rigid and echogenic" also, "enlarged spleen consistent with portal hypertension" So now, I really don't know whether my liver is better or worse...sometimes I truly feel worse, I think, than when I started tx. I am really trying hard to be optimistic. Gastro says we will do another bx in a year.

Moonbaby
Helpful - 0
Avatar universal
Hi MB,
I have not had any oral or other infections while on tx. I also notice heartburn is most common with these problems. Do you have heartburn? I don't have any at all and did not all through tx. The thing I am sure of is it has something to do with tx. I just don't know what. Maybe it has to do with the length and dose. My labs were pretty good throughout tx also. My levels of severity also seem to fluctuate. I am curious if you did tx 6 months or 48 or more? I don't mind so much if it last long if there is an end in sight. I hate to think this is "forever". I'm glad I saw your post. LL
Helpful - 0
Avatar universal
Hi layla,
   Stomatitis is inflammation of the oral mucosa (i think it is also sometimes called glossitis). Mucositis is an inflammation of all mucosa. Our entire GI tract is lined with mucosa. What I have been able to find out, is that mucositis is a side effect of certain chemptherapy and radiation regimes and has something to do with abnormal develpment of epithelial cells in the lining of the mucosa. When our immune systems get low, secondary infections develop locally or enter our bloodstream through open areas in our mucosa if we develop this disorder. Bacterial, viral, and fungal infections can be involved. I had oral thrush throughout tx and was on Nystatin Swish-N-Swallow the entire 48 weeks. My wbc's and rbc's remained normal throughout tx and my immune system appeared to be intact. My gastro and primary have both said that this is a side effect of tx and could possibly last a very long time. The level of severity of the symptoms fluctuates and seems cyclic. I am just hoping that it goes away soon.

Moonbaby
Helpful - 0
Avatar universal
I am 6 months post tx (awaiting PCR results). I did 18 months tx. How long were you on tx? I am also expriencing nausea and never had it before tx. I don't know what to think of this and have not seen anyone else mention it until your post. I don't know about the dx you posted but will look them up in the internet to see what it is. This is very fustrating as all my other sx are about gone. If it were not for this I would feel great. I did email my hepatologist about this but with the holiday I think it will be a bit before he responds. Any info you can pass to me would be appreciated. LL
Helpful - 0
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