Hello All,

I have a question in regards to a sudden mucositis while I am in treatment for oral cancer recurrence.

When I first underwent treatment, I experienced pretty severe mucositis. It took four months on a PEG to get over it. I started chemo for recurrence back in August-Oct '09. Cisplatin and Taxotere with Tarceva (an experimental suggestion from MD Anderson). I've always had a very sensitive tongue after radiation in '08, but I did not experience much increase in sores or senstivity with this treatment. That treatment didn't seem all that effective, though, and now I am on a Clinical Trial at MD Anderson with Torisel and Avastin. We just dropped the Avastin because of positive results but fistula formation and the idea that Avastin is not likely to be the active drug. We started Tarceva again a week ago, however, because we thought that this drug was helpful in the past.

Just a few days ago, my lips became inflamed, my inner lips, cheeks and tongue are sore, and I'm back on Magic Mouthwash, caphosol, baking soda/salt rinses...etc.

My question is, if this were a "radiation recall" kind of event...have any of you experienced it? I'm assuming it came on suddenly with the combo of Tarceva and Torisel. I'm wondering if my body will adjust to the onslaught though and the mucositis abates a bit. I know most people here won't have experience with the drugs I'm on, but my question is more directly related to "radiation recall" and one's experience with it.

Thank you!
Kristen

I never had any recalls for anything to do with OC but sure know about the sore tongue, lips, dry mouth and the rst for the last almost 4 yrs. Good luck and I hope yours clears up for you soon.

Hi everyone. Just wanted to let you know Jim can't get onto the site because his computer is all messed up. He downloaded an anti-virus program, and now he can't get onto any site, not even to play a game. It's the same one I tried last week and my computer ended up crashing and I had to do a system restore, which is what he's going to have to do again. He said he'll be back on, but he's just not sure when or how long that will be. I'll let you know what happens. Love to all of you, Carol

Hi Kristen, we think that my wife had a radiation recall on her neck. It only seemed to last a day or two where the areas that had been radiated turned real red but no sores. You could basically almost see a line between where it was red like a sun burn and normal flesh color. I know when she was on a clinical trial, they were always wanting to know anything out of the ordinary and an sure the trial you are on will want all your details.

Good luck and our prayers are with you.

Carol,

I had the same problem with my wife's computer. If it is "Personal Security Center" with a blue shield you can look it up on google. There is an uninstall program that you can get to under my computer. I know I found the instructions on google though.

Kelly

Some quick computer advice:

This happened to my husband's computer, and he has no clue how it got infected -- it can be as innocuous as clicking on a link in an e-mail purportedly sent from someone you know or some organization you trust.

These "Personal Security Center" popups will try to sell you an anti-virus program. DON'T FALL FOR IT -- it's a scam. (If you already paid, call your credit card company and dispute the charges.)

Once you see these pop-ups, which are designed to resemble real Windows security alerts, you need to take quick action. You need an anti-virus program (good free ones are available from AVG and Avast); in addition, some ISPs offer anti-virus protection as part of their service (ours has McAfee). More important, though, is getting Anti-Malware from Malwarebytes.org. -- also free. (Paid versions of all these, with additional features, are available, but the free ones worked for us.)

Because this malware can block real anti-virus/anti-malware programs from running, we downloaded the anti-virus and anti-malware programs to a thumb drive on my uninfected computer. We ensured that his computer was disconnected from the Internet and started it in Safe Mode. Then we moved the thumb drive to his computer and ran the anti-virus and anti-malware programs from the thumb drive, but had them scan his C drive. You may have to run both the anti-virus and anti-malware programs several times; it took at least a couple of hours to ensure that the computer was clean.

When the malware is gone, install the anti-virus and anti-malware programs onto the formerly infected computer and run them regularly.

We now return you to the Radiation Recall discussion.

I dumped Norton and Symantec years ago and got a license for ESET NOD32 antivirus and haven't had a problem since, and it dramatically sped up my computer and uses less RAM. It was suggested to me by a software engineer who deals with HIPPA patient data security issues. It runs, pretty much in the background, like Apple antivirus and scans everything coming or going. You only get what you pay for.

This is the first i have heard of "radiation recall". I have heard of people having a second radiation Tx, especially if their first was IMRT and they were irradiating a different area.

There were also some clinial trials several years ago to determine the efficacy of doubling the radiation treatment. it appeared to be successful and the adverse effects were not as bad as anticipated, but not without risks.

Some people have also been given a "boost" or 6 or so Gy's extra radiation.