I am a new guy here, 58, never smoked, rarely drink, squamous cell base of tongue with lymph node involvement, HPV type. Doctors at Cleveland Clinic are very optimistic, seem great so far, report high success rates for my particular cancer. Radiation and chemo begin 8/20/12.

Am trying to be optimistic, see many encouraging things in the forums (thank you all!) but also see things I didn't even know might be issues to worry about and then go the opposite direction. Was doing OK until the mask was fitted, could barely manage the mouthpiece without gagging, was not told how tight it would be. Can't tell you how frightened I am now as I contemplate the daily radiation under that mask; am hoping the Ativan will help, but if anyone has suggestions about avoiding gagging, or what to do if it happens, I would be SO thankful.

In addition I will be on Cisplatin, one dose at beginning of radiation and another three weeks later. Is this typical? Would spreading it out (if even possible) reduce side effects or have other advantages?

Have mild pre-existing tinnitus and very mild pre-exisitng peripheral neuropathy--slight loss of feeling in toes and fingertips, barely noticeable. However, am concerned about cisplatin worsening these. One person mentioned carboplatin alternative having less such risks but cannot locate any more about it. Does anyone have any info about it?

Would love to hear from anyone who has suggestions, who's had experience with similar cancer or treatment, or who is/was treated at Cleveland Clinic. Thank you all for all you have posted, and the support you have shared.

Ed H

Hi Ed - I'm sure you'll be hearing from a lot of people here who have had direct experience that resembles yours, so hang in there. Stay optimistic and don't think about the negative "what ifs". It's good you already have the Ativan to help with the anxiety of being in the mask. When my son had his Rad TX, they allowed him to bring his own music and they had other music they could play while Rad Tx was going on. Listening to something helps to let you know how much longer you have to go before you're done. Just let the doctors know about your anxious feelings and they may be able to reassure you.

Ed

After my cancer came back when the Erbitux did not work, my CCC gave me carboplatin which seems to have done the trick in mopping up what radiation missed. It's a platinum based drug, just like cisplatin but without the hearing issues. Unfortunately it's been around a long time and there is no money or energy around doing clinical trials proving it's efficacy conclusively. All the money & energy is going to Erbitux and other monoclonal drugs w/o platinum. But it could not hurt to ask your doctors to consider switching.

I can relate to the mouthpiece and mask being tight. The second time around I insisted they modify my mask to make a big mouth opening and I just wore my fluoride trays plus I took Ativan. So that's my suggestion.

While the cisplatin is brutal, they are still doing a clinical trial to see if Erbitux works as well as cisplatin which is still the "gold standard" for Base of tongue TX (not for all oral cancers). Take a look at how great it worked out for David CPA who did the traditional route instead of my experimental one (for base of tongue). So while this is going to be tough, you can and will beat it IMO.

Charm

Welcome to OCF, Ed! You will find tons of info and support to help you get thru your treatments.

Several members, myself included have done the 3 big doses of cisplatin. My third dose was cancelled due to my reactions to it. This has been done with many others who have had 3 doses of cisplatin scheduled. I see the patients who get weekly smaller doses usually fare slightly better with less nausea. One thing that you need to be very cautious about is cisplatin is known to cause high frequency hearing loss. Please make sure your doctors know about any hearing issues you currently have. The hearing loss is permanent so if you do continue with the course you discussed above you must speak up immediately if you notice a problem.

Prior to beginning treatments, get a full blood count done including thyroid levels. You will want to see the dentist to get dental trays made to use daily with fluoride gel. Right now you should also be eating all your favorite foods. Try to bulk up if yo are on the thin side. Dont worry about gaining weight, you will probably struggle to keep your weight on while going thru tx as your sense of taste will change for a while and swallowing may be difficult.

Please ask questions and learn from all the info on the forum and main OCF pages. An educated patient is their own best advocate.

Hello Ed, my brother was extremely anxious during the mask fitting and leading up to his treatments and like you was alarmed at how close the fit was. With the help of some happy pills, he managed OK, and after the first week he was able to cope well on his own. I would think that your doctors assume being anxious is the rule with patients, not the exception, so they will be very understanding about your fears. Best of luck with it all.

I have high frequency hearing loss already, though I suspect it is not so much hearing loss per se as it is the tinnitus simply drowning out sounds of similar frequency (my tinnitus is a constant but variable hiss or whoosh-like sound, a bit like tree frogs or crickets).

I would be very upset if this worsened, as I am a teacher and psychiatric nurse, and listening is key to what I do. This makes me think carboplatin may be the way to go. Since posting earlier tonight I did locate more on carboplatin here; for others, I had better luck (more hits) searching for it on google (which led me to the postings here, including my own!) than I did when using this site's search function.

I will be doing a more complete search tomorrow but would appreciate hearing from those treated with, or switched to, carboplatin, especially comparing their side effects and/or outcomes down the road. Thank you all!

Hi and welcome - definitely make hem aware of your hearing and neuropathy issues - and ask about carbo. Ask them to cut the mouth area out - they did for me. And I would simply close my eyes and focus on not moving and listening to the music, mind you I'm not claustrophobic and pretty zen about most things - I'd just say mantras etc... They I'll give you Ativan. advocate for yourself in terms of the mouth piece etc... Good luck!

Ed,

I am a tad surprised that knowing you are already have "hearing issues" that they still recommend Cis vs Carbo. I realize that no studies have been done to compare the 2 AND Cis is the "Gold Standard" for our Tx but I was told (unfortunately after Cis damaged my hearing) that had (my MO) known that my hearing was being damaged he would have switched me to Carbo because "it's just as effective as Cis but without the nasty side effects." His words exactly. Certaintly begs the obvious question...so why didn't you just start me off with Carbo, you idiot?

Almost everyone has issues with that darn mask at first. Some more than others. My heart started pounding like it was going to explode out of my chest that first time they clamped me down but the next time I was more mentally prepared and I just coped. As Anne-Marie said Moffitt allowed me to bring my own CD's and I had them crank it up as loud as they would allow and it helped pass the time.

Has your dentist made the Fluoride Trays yet? I started using mine 1 month pre Tx and continued to use them 5 years post Tx until my dentist said I could stop.

Have your TSH check your next blood draw and save the results in case your thyroid craps out.

I don't care what your BMI is, eat everything in sight from now until you don't want to anymore. You will loose your taste fairly quickly and it won't recover until post Tx. During and post Tx set your goal at consuming 3000 cals and 48 ozs of water each and every day. Eric aka Young Frack has done a lot of research into the nutrition side of our Tx so I'm sure he'll add his recommendations.

Things will start off slow and you may even think this Tx will be a breeze but after about the second Cis bag and the first 15 rads most of us feel the effects and they continue to get worse until about 3 weeks POST Tx. I only mention this just in case this happens to you so you realize this is NORMAL.

Glad you found this site as it will really be a blessing throughout your Tx and recovery so use it and use it often. Also encourage your caregiver it join as well.

Ed

My treatment with Carboplatin (three doses a week apart) did not affect my hearing at all according to hearing tests. I did have some nausea but not nearly as the first round of TX. Both my radiologist and chemo doctors were fine with me not using cisplatin but carboplatin after I asked about it.

Charm

Ed, I had 38 sessions of radiation and the 3 cisplatin, and I did OK. The mask is pretty freaky, though. I, also, brought my own CDs for radiation and I used to count the number of songs that were being played. When I got to the 8th or 9th song I knew that I was almost finished. I did gag occasionally with the mouthpiece. Mine looked kind of like a fudgesickle. The mouthpiece actually bothered me more than the mask. I was also told (after the fact) that some people don't make it through the 3 doses of cisplatin, but I did alright. No hearing issues. i also never had to take any anxiety meds, but maybe I should have askec for some.