I have had the twitchy thingy back in the hospital...Very slight and only a couple to a few times...

The ENT team there seemed to think they were no big deal.

This is more like "pins and needles" like you described when an arm falls asleep, etc.

I will discuss it for sure with the Dr later today.

Thanks!

PS: I have the latest info on MDAnderson under my other thread...

Michael,

I had a lot of the neuralgia you are describing and it did wake me up at night. There is medication you can take for it but it will make you sleepy -- I chose not to take it but if it is really making you nuts, then ask your doctors. I looked at it as a good thing because it meant that the nerves were regenerating and that maybe my smile would come back. After almost six months it did -- so try to hang in there. There may be good stuff coming from this discomfort.

Barb

Good Luck Michael !

I had an encouraging day at Hopkins today, as well ---excellent consults with Dr. Forastiere and Dr. Lee (med onc and rad onc, respectively) and feel much better about my condition and treatment. I just need to make some more decisions about chemo drugs -- pros and cons re side effects, etc. I would like to avoid more hearing loss so they are cautious about cisplatin for me, for example.

What is great about a center like Hopkins (or Sloan or Anderson) is that the doctors work together and actually talk to each other. For example, we went in to see Lee he had already been briefed by Dr. Forastiere about my hearing issues and other QOL concerns and had already formulated plans to address these.

Keep us up to date on your progress and I will do the same for mine.

Barry

Barry (with apologies to Michael for sidetracking his thread) I had a very strange hearing change while on cisplatin, was switched to carboplatin and taxol, and hear perfectly today. There is a small percentage, less than 1% actually, who react badly to cisplatin. I am one, but the other two drugs did the job and spared my hearing completely. Also, the two drugs I was switched to had only one side effect, which was loss of my hair, not all body, just head. And that grew back just fine.

For what it's worth my hearing was real bad in my right ear for a few days after the surgery, and even today on the airplanes I had a ton of popping in my ear and slight pain, with ringing.

It seems to be getting better, what was the cause of yours Barry? Sorry I jumped in mid-thought.

Joanna, Carbo/Taxol is the combo MDAnderson is recommending for the Erbitux trial too.

Does anyone have an opinion on radiation? Is it the same anywhere you go, or does the facility make a difference?

Tingles!!

I asked the ENT at Anderson and he agrees it is nerve regeneration.

I don't want to take heavy sedatives, anyone have experience with anything else?

A Stanford nurse had what sounded like a good idea, Benedryl, but it doesn't touch it.

The tingles seem to be worse when I try to sleep, or exert myself (ie: reaching for the TV remote:P ) or even chewing food.

Any ideas would be appreciated!!!!

Hi Michael --

Actually, cisplatin hearing loss (primarily in upper registers) is greater than 1% -- but a lot depends on the dose. If it were the primary agent (mono-therapy) there is a much higher risk. Neurotoxicity (including hearing loss) occurs in about 85% of patients at doses over 300mg/m2. But at the dose I would be getting along with radiation, one rad onc said less than 10% chance of a problem. However Dr. Lee (who is the senior) felt it was greater than that for me as I already had auditory problems.

My hearing loss is in part due to simple aging -- men tend to lose upper registers as they age -- but also as a boy I had some serious ear infections which damaged my hearing. My brother who is younger had same problems, he is deafer than I am!

I will be getting carbo/taxol to -- would have liked to have entered an on-going trial for a new EGFR drug but it involves cisplatin and after some discussion, was recommended against it. I don't think Erbitux is available but
will check.

Good luck,
Barry

Hi Michael,
A couple of years ago I was going through the same decision making process you are right now. I considered MD Anderson and Sloan Kettering when it came to my mom's treatment. I contacted them, and I believe Johns Hopkins as well. All excellent institutions from what I've read. To heck with the humdity of Texas. If I'm not mistaken, Lance Armstrong and Brian Hill both went there for treatment. I spoke with several doctors at each hospital and they told me I was in good hands right where I was in Chicago...so we decided to stay put. Had I not heard such wonderful things about the docs where my mom sought treatment, I was ready to pack our bags and head to Texas. At the time, they seemed to have the latest technology and the email responses from the doctors was very comforting. In all honesty, each doctor from each hospital I contacted was wonderful. I can't say enough good things about the docs that were kind enough to offer help during that time. I wish you the best. You are taking a very proactive role and are doing a great job researching your options. Take care.
Dave

Joanna was qouting the statistics for total deafness involving Cisplatin. I had the same childhood issues as coop, infections, etc. I am also a musican and bassplayer and have spent many years next to a 120 dB ride cymbal. I had Cisplatin and my hearing actually improved, especially the midrange. I had three hearing tests during chemo, one of them was a baseline which should always be done if you are on Cisplatin. There are definable warning symptoms if you are in the 1 percentile group so, like in Joannas case, they were able to switch her to carboplatin which is a less toxic relative of Cisplatin. I had hearing problems for a long time post rad due to radiation damage to the eustacian tubes. It eventually all healed up and everything is back to normal (well the "new mormal"). But for a while I had a lot of pressure buildup and pain. It even showed up on the MRI's.

Cisplatin remains one of the most effective adjuncts to radiation so don't be hasty to rule it out. Most people don't have serious problems with it. And the antiemetics work pretty well these days.

In the latest survey, MDACCC was the top ranked NCI/NCCN CCC. MSKCCC was #2. The site has the rankings.

I think the latest rankings just flipped them again, that were released a couple of days ago by US News & World Resport.