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.

Hi Ed!

I had chemo induction prior to starting radiation. This was 3 rounds (2 weeks apart) of cisplatin, 5fu and taxotere. I would go to the doctor's office on Monday and be there on an IV all day getting the chemo, fluids and anti-nausea meds. I had a chemo port and they sent me home with more chemo for another 5 days. The ringing in my ears started right away and has not gone away but other than that, the only other side effect was my hair fell out after the first week. I had no nausea whatsoever and never threw up! I'm not sure when the tingling in my hands and feet started but that's still with me today. With the radiation, I had 7 rounds of Carboplatin. The purpose of the chemo induction was to try to get rid of the tumors in my neck so I wouldn't need a neck dissection. It worked!

At a recent support group meeting, my surgeon was the co-facillitator and they were talking about the different treatment protocols. Not too many people have the chemo induction like I did and I asked him about it. His answer scared the hell out of me and I'm glad I didn't know it prior to treatment. He said "most people can't make it through it".

I live alone and didn't have a caregiver and worked all the way through treatment until I was fired 2 weeks before treatment ended. My advice to you is to be strong, believe in yourself and have a positive attitude!

Good luck and keep posting!!

Cathi

Ed,

When I did my treatment at U of M my Oncologist said they were going with Cisplatin weekly. When I mentioned some hearing loss from an old ear infection, he imediatly changed to the Carbo. I asked him what the difference was and he said "Not much" said they are both old drugs in use for over thirty years and he had no real preferance. Since Cis. came our a little later then Carbo, it must make it a default of some sort.

As I said earlir, I did my chemo weekly with no ill effects.

Will be discussing carboplatin with my oncologist tomorrow.

Any experiences with concentrated chemo (twice, three weeks apart, as opposed to weekly smaller dosages)?

Thanks everyone, for the info and support--am VERY happy I found this site!

Smaller weekly doses are more easily tolerated. They do the same thing by helping the radiation work better. If given a choice I would suggest going for the weekly doses.

I was not given that option 6 years ago but we see more and more treatment centers using the weekly Cis method vs the gold standard "3 big Bag" method. From what we have seen on this site, most, if not all people that got the weekly Cis bags reported less severe side effects than the 3 bag method. I don't recall anyone getting Carbo in weekly doses but we don't see to many getting Carbo to begin with.

Cathie Carpenter...I had TPF Induction chemo, but could only do one week, which hospitalized me for 6 months. It caused every type ailment, paralysis, blindness. It is the most effective killing Cancer out of all the chemo regimes, but there is debate on its use due to the high toxicities.

Good luck with our treatment Ed.

I read the weekly dosage of cisplatin reduced toxicities, but had more long term side effects than the big three.

Hi, Ed
As others have said, make sure you discuss the hearing loss and neuropathy with the doctors. You might request an audiologist evaluation for the hearing loss. Bring in a notebook and show them a printed copy of a study or two re: cisplatin so they will take you seriously. If you have a caregiver, bring them along with you, particularly if they are meaner that you are.

Now, about the mask. So, my husband the scientist with the physics background was not bothered by the mask, and found it comforting that it was keeping him in correct location relative to the treatment machine. I don't know if you will find this helpful (and I was chastened for being insensitive the last time I mentioned this) but it was his reaction to the mask, and presents a different way of thinking about it. He didn't want to move even a millimeter from target!

Best wishes,
Maria

Thanks, everyone. The audiology testing showed high frequency hearing loss consistent with my age (58), but I wonder how much of the "loss" is really my being unable to hear frequencies that happen to be the same as the steady "whoosh" I hear as my tinnitus. Anyhow, my doc reports that testing done to date gives cisplatin the edge over carboplatin in terms of efficacy for oral cancers (though not all cancers), and wanted to stay with that, but monitor me closely for neuropathy. Is not what I wanted to hear, but I guess killing cancer better is worth the risk. He says the risk is low because the dosage will be lower than in other cancers. I also noted that the literature on carboplatin also lists neurotoxicity as a risk, though less so that with cisplatin.

Had my run-through yesterday in preparation for the real radiation that begins the day after tomorrow. Run-thorugh was uneventful, handled it better than I thought, perhaps the 1/2 mg ativan helped. They are going to cut a hole in the mask around the mouthpiece as several here have suggested, which will increase at least my psychological discomfort. Then another pt in the waiting room said they had been momentarily unable to release his mask when the treatment was over; when I asked if I should bring a crowbar to my first session he was quick to say it was momentary and that techs were on top of the problem. I shall try to visualize the mask as my friend, holding me still for maximum benefit...

Chemo starts tomorrow too, first of two sessions three weeks apart, they tell me I will be there 6-7 hours for that. Is one able and up to doing anything to pass that time? Like read or watch TV? Or is one too affected by the drugs etc? Thanks.

Ed, good idea to visualize the mask as a positive...pilot hubby would take virtual trips in his airplane to stave off his anxiety over being "held down."

Re: the chemo sessions. Bill was given benedryl at the beginning of his sessions which I think included up to 10/11 meds thru the IV. So, he would usually nod off for an hour or two but then was able to read, roll to the bathroom or watch TV (which should be available in the treatment rooms) during his 7 hours there. The treatment room here was a very pleasant place (once you got over the shock of what was you were there for) ..bright, sunny, comfy reclining chairs, blankets if you are chilly and nurses that were top notch and very caring.

I hope your experience with chemo sessions compares. Best of luck,

Deb

Ed - During the Rad Tx while under the mask, my son had the option of bringing his own CD for them to play music or they would supply music in the Rad room. THey could probably also play an audio book if that helps.

Ed

Good for you for getting the mouth hole in the mask. It does not affect the mask's function of holding you in place for the radiation. Heads up that there may be temporary "waffle" marks on your face after they unbolt your mask. (They used actual bolts into the lead table for mine). Think of it as just one less thing to worry about since as Maria noted, it's important to keep your head still and in place for the treatment.

As for Chemo, I brought both an MP3 player and good books. I was not interested in watching the daytime crap on TV, although I could hear the shrieks after the DNA paternity tests on Maury Povitch from the other TVs. The Benadryl never made me sleepy enough to nap plus even if I had the beeping from the pump whenever a bag of saline or potassium emptied would have woken me up. My advice is to have someone come with you if possible. Even at my CCC, the staffing ratio is such that you are not constantly attended and little things like the beeping or getting up and dragging everything including the chemo pump and pole and bags into the bathroom are up to you to fix. I would have had to wear Depends if my wife did not come to chemo with me and one poor guy a few chairs down from me who was alone ended up pissing himself. The poor nurses do their very best but the hospitals overload them. My nurse had to check the chemo orders, call in the orders to the pharmacy, pick up the chemo, heat up the towels , hook up the IV, load up the saline, administer the Benadryl, start the potassium drip, take our lunch orders, check the chemo flow for 5 patients concurrently and still distribute our lunches. She could not abandon another patient in midstream to focus solely on me. With the exception of that one poor guy, every chemo patient had a caregiver to help out and they made it clear that was their expectation.

Charm

Taking a friend along on chemo days would be a great idea. You can play cards, use a computer, watch tv, read, chat, etc. Getting chemo is one of the more pleasant experiences of the whole treatment regime.

Best wishes!

Good luck with chemo, the mask part will likely get easier after a few sessions,.. Take care and any blessings to you.

Hi Ed. Reading your post has taken me right back to my experiences of dealing with the mask. I found the fitting of the mask pretty horrible and I was worried about being left alone while the raditation was underway. But once it was underway I got into the swing of it and found I could let me mind wander in quite an 'out of mind' way. Lying so still is a bit strange as after a while there is no sensory perception telling you where your body is in space, so I felt like I was floating! The mask did feel tight to start with and left pressure marks on my face for a few minutes, but it felt more comfortable as time went on. To start with I just focused on my breathing. I hope it goes OK for you. Trying pre-thinking of some pleasant thoughts to focus on. Sally

[quote=Charm2017]
As for Chemo, I brought both an MP3 player and good books. I was not interested in watching the daytime crap on TV, although I could hear the shrieks after the DNA paternity tests on Maury Povitch from the other TVs. The Benadryl never made me sleepy enough to nap plus even if I had the beeping from the pump whenever a bag of saline or potassium emptied would have woken me up. My advice is to have someone come with you if possible. Even at my CCC, the staffing ratio is such that you are not constantly attended and little things like the beeping or getting up and dragging everything including the chemo pump and pole and bags into the bathroom are up to you to fix. I would have had to wear Depends if my wife did not come to chemo with me and one poor guy a few chairs down from me who was alone ended up pissing himself. The poor nurses do their very best but the hospitals overload them. My nurse had to check the chemo orders, call in the orders to the pharmacy, pick up the chemo, heat up the towels , hook up the IV, load up the saline, administer the Benadryl, start the potassium drip, take our lunch orders, check the chemo flow for 5 patients concurrently and still distribute our lunches. She could not abandon another patient in midstream to focus solely on me. With the exception of that one poor guy, every chemo patient had a caregiver to help out and they made it clear that was their expectation. [/quote]

Wow Charm,

Our experience was so different. Bill had treatment at an Oncology Center and we could not have been treated nicer. In fact, the caregivers/companions/drivers were encouraged to go home or run errands, in other words...take a break. I did stay sometimes to help Bill with his "lunch" of supplement thru his PEG but otherwise he was in terrific hands and there were plenty of nurses to help and they were not overwhelmed at all. He was made to feel very comfortable and all requests were met promptly. The surroundings were bright, pleasant, and welcoming. Once I got over the shock of what we were there for, I felt very blessed.

So sorry you had such a hard time, but I want people to know that they might have an option where they receive chemo/rt treatments. We were under the watch of Moffitt CC in Tampa but received treatment here at home with their blessings.

Deb

Deb

My CCC, Georgetown Lombardi Cancer Center is just part of a hospital building on a larger University campus. Space is at a premium and ever since the Jesuits sold the hospital to MedStar, there have been staffing issues as MedStar optimizes profit by reducing staff/patient ratio. I had heard that many offsite oncology centers offer a more pleasant experience. I should have made it clearer that because my wife accompanied me, I did not have a hard time at all. It was much more pleasant than the radiation treatments.

Jamos

It would be great if your chemo experience is similar to Bill's. My advice is still to bring a caregiver along to see what the staffing ratio per patient is the first chemo appointment. Things were pretty much the same, all eleven of my chemo TX even though the last three were 18 months later than the first eight. Perhaps my chemo experience was unique to MedStar.

Charm

My sister-in-law and niece purchased a Kindle and book credit for my husband to use during treatment - it worked out very well, and provided a nice source of interaction with the nurses, techs and doctors. He also had his Ipod for music.

Thank you all for the support and good ideas. I have ended up with the rad txs and cisplatin. Both started Monday 8/20. The mask has turned out to be less distressing as I have adjusted to it, and Ativan and relaxation exercises have helped such that I have been fine in my two treatments so far even without the hole being made in the mask (I will keep that as an option if things change). The chemo has not worsened my tinnitus so far, still watching and waiting re: signs of neurotoxicity. The antinausea drugs have worked wonders: not a bit of nausea, and still eating normal food for the moment. One "hiccup" to tx so far is literally that: recurrent, protracted hiccups. I will start a new thread about that. Thanks again to all for your support and ideas.

Good luck throughout the Tx and be sure to use this site as often as you wish.

Thanks, Dave, am a big fan of this site and finding it VERY helpful, both the info/tips and the support, so I will be a regular! Only issue so far seems to be possible ototoxicity developing from the cisplatin.

I've been told that once you begin to experience hearing issues with cisplatin, it is too late to change the damage done. Let them know immediately. Good luck

Will do. Am hoping to keep from adding further to the problem via a change to carboplatin or similar related but less ototoxic agent.