I've finished 19 of 33 xrts and 2 of 3 cisplat txs. I've noticed a change in my hearing, as if I'm underwater. I was thinking it may be related to the swelling in my throat. I've heard that cisplatlin can cause hearing loss but rarely. Has this happened to anyone else, was it permanent or temporary?

Tim Stoj

Stoj,
Hearing changes are definitely a side effect of Cisplatin; our MO said to tell him about it immediately, so make sure you do that.

My husband had the underwater effect that you describe. It got better, but now he cannot hear high frequencies, particularly some parts of female voices (now he really has an excuse--how convenient :rolleyes: ). An example: we were in the car yesterday and there was song on the radio with female vocals and he said he couldn't hear most of the words. Just to test, I lowered my voice and he said he could hear me much better.

His MO says that could be permanent. His ENT recommended a hearing evaluation and he is getting that at the end of this month.

Hang in there, Stoj! You're getting to the home-stretch. I don't recall if you have a PEG or not. It was during week 4 of radiation that Tom got his PEG and it was not a moment too soon! Stay nourished and stay hydrated.

Joyce

Tim, are you experiencing pressure, like your ears are plugged? I can't speak to the cisplatin related hearing loss, because I only had one cisplatin/docetaxol treatment (late in the radiation cycle; made me too sick to continue). I did, however, 'acquire' some hearing loss along with a plugged ears sensation after treatment ended. My ENT said the radiation caused a thickening of the eustachian tubes. She 'installed' tiny tubes through my eardrums in an effort to equalize the pressure. Did it help? Maybe a little, mostly not, but my hearing did improve. Is it permanent? Who knows.....

Joyce,
Thanks for the insight, I'll let my MO know as well as my RO. I see the RO tomorrow. I do have a PEG and use it a couple of times a week. Thnaks for the encouragement, I can't wait for this to be over so I can start recovery. I live in GA and am getting treatment in San Antonio TX. So we're missing our home.

RileyMc,
I do have pressure and the occasional ringing. I guess when I'm done with this treatment here in Texas that most of my follow-up will be done with an ENT in GA.

I've had 2 cisplat treatments already and I'm not sure if more hearing loss is worth the benefit of one more treatment, what say you all?

Thanks
Tim Stoj

Stoj,
Your MO may come to that conclusion as well. It is a question that is certainly worth raising. Tom had the ringing, too, at times it was so intense he would just hold up his hand and stop talking or interupt me, because he couldn't hear anything else but the ringing.

I so admire folks like you that do this treatment so far from "home." As if this road wasn't difficult or stressful enough, you have to cope with being so far away from familiar surroundings. You said "we," so it sounds like you have someone with you to keep you company. My husband, Tom, began treatment just as we relocated. We were living in a Residence Inn when he had his first surgery! We can already look back on that and laugh, and are thankful for how quickly the time has passed since then--3.5 months.

Joyce

Supposedly something like 60% of people having cisplatin have some sort of hearing issue, in many it is a permanent loss of high-end hearing which cannot be corrected. In others it is a temporary ringing in the ears or feeling of "water in the ears" which gradually improves. A lot depends on dose and of course, individual sensitivity to the drug. However the side effect is common enough that my husband's MO would not use cisplatin on him, as he already has measurable high-end hearing loss (due to childhood ear infections) that interfers with his ornithological work. Instead she gave him carboplatin, which has a less than 3% chance of causing hearing loss.

Barry had a hearing test before treatment and again about 3 months after end of treatment and there had been no significant changes.

If you google "cisplatin and hearing loss" you can get more information with which to speak to your medical oncologist.

Gail

Gail/Joyce,

Hadn't been told the figure was so high for hearing issues. I'll definately talk with my MO about that. Today has been a rough day for me, dealing with a lot of nausea yesterday and today. Up until now I haven't had any issues with nausea. I took some compezine earlier and right afterward I hurled. It's neen 6 days since my last cisplat, maybe it's the radiation or all the plegm? I really do need to eat something though. I have the PEG but am getting nauseated when I use it as well. Maybe I'll try some canned soup.

Thanks
Tim

Hi Tim,

My Dad is already hard of hearing; can't hear in one ear due to meniers disease. The chemo oncologist told us that his hearing would most likely be effected and that is is irreversible. My father was thinking of not having the chemo because of this; however the RO said she felt it was needed. So that's all he had to hear; and he did all 3 chemos.

I think it was after the 2nd chemo that his hearing became distorted. He said we sounded like we had marbles in our mouths (come to think of it; it was just when us women talked). Also too many people in a room talking seemed to annoy him and still does. He also felt pressure in the ear and some ringing (which he already gets with meniers).

I noticed all this seemed to be worse right after each chemo and would clear up a bit a couple of weeks after that.

Well he's 3 1/2 months out of treatment now. His hearing is off compared to before. His cell phone rings in his pocket and he doesn't hear it, he's saying 'what' alot. But he can hear, have conversations, watch tv, go to the movies; just not like before.

He had a hearing test before chemo but hasn't had a follow up yet. For my Dad he felt having the chemo and living was more important then his hearing. The dr didn't suggest an alternative chemo, so he did the Cisplatin.

Talk to your doctor.
Lisa

I see your point, my question fo my MO is how much benifit is derived between 2 cisplatlan and 3 Txs. I've seen some folks who have had their cisplatlan stopped some with a substitute and some without?

Tim Stoj

I should add:

Our chemo dr told us that not everyone can do 3 chemo's and although 3 are best; 2 chemo's were still good; but one was not.

I feel my Dad's hearing has improved somewhat; and remember he already was hard of hearing; so it might not be an issue for you.

I only had two chemos but that's because my WBC was so low when the third was supposed to happen that they couldn't do a third in a way that would have affected radiation (ie. anywhere near on schedule). My RBC was really low too (despite taking Procrit). Chemo was kind of icing on the cake for me, anyway, an extra-aggressive treatment for my stage of cancer, so my MO said it was OK to miss the third.

I think it's important to note in Gail's post that 60% of people have some sort of hearting issue from cisplat. but not all of that is hearing loss. I had ringing in my ears during chemo and on and off for about 6 months after. It's completely gone away now and I don't think my hearing has been permanently affected at all. Still, it's worth discussing with your MO.

Nelie

Last night was really rough for me. Gagging is really kicking my but right now. The phlegm(sp) just keeps coming. Last night I was doing a tube feeding and it was time for the roxinol...no big deal I've done the two before. Well as soon as I swallowed the roxinol everything came up. I think last night was the 1st time I actually felt this treatment was getting to me. I mean I have 14 xrt days left and am getting concerned that I may not be up to the finish.

I thank God for the OCF forums and the people I've met here, it's been a big help.

Tim Stoj

Tim hang in there.

My Dad hated the phlegm also; that was his main issue. It really concerned him when he'd try to force it up. BUT he got threw it!! and so can you! Just keep telling yourself it will get better.

Get a humidifier for your bedroom; this will help a bit.

Get lots of hydration into your tube and if you can't then ask for IV hydration. My Dad had daily IV hydration on the last week of treatment and it helped.

I know the last week of rad was hard for him to do; but he did it! He skipped one day but added to the end of treatment and he did all 35 IMRT's. We met another man age 72 who put his entire last week on hold for a week then he continued and completed all 35. You only have 14 left to do; you are almost done. Keep up the good work Tim! and talk to your doctors about options and concerns.

Lisa

Thanks Lisa,

Finished another XRT today so down to 13 now. I had 2 bags of IV fluids today. I usually get one a day except on the weekends but today they wanted to give me 2 since I had been vomiting and lost about 8lbs since Friday. That's the only weight I've lost so far and this the start of the 5th week. I have such a tough time eating orally and the tube feedings take so long when I use the pump. I wish I could just pump that stuff in my tube quickly, but I'm told that will make you sick?

Tim

Yes the feedings are time consuming; but my Dad actually found the longer he set the pump to drip; the better he felt. The feedings made him feel sick; he managed to do 3 day; the dr suggested more. He was using Glucerna for diabetics; it's the only one he found agreed with him; and only 235 cals each can. Not many calories for a guy his size or for anyone. He lost 50lbs. I read online Nestle has a high cal drink; you might want to look into it.

Glad you are having hydration. Now just sit back relax and do your feedings; watch tv or play on the computer; or doze off sitting up in a comfy chair. The nurse told my Dad not to forse anything in by mouth not even water.

Sounds like you are doing great for where you are at in your treatment.

Hey Tim; it's only been 3 1/2 months since my Dad finished his treatment and he's out eating in restaurant; spicy foods and all. So just know it gets better.

Lisa

Hey Tim,

My husband had that too and we found that doing the slow gravity drip bag was the only way he could tolerate feedings at the height of his side effects. Sometimes we ran a larger amount all night and just taped the connecting tube to make sure he didn't roll over on it. There were many days when he was hooked up all the time. See what you feel the most comfortable with.

All of this is frustrating but it will get better. What kind of anti nausea drugs are you on? We found that daily zofran with compazine for breakthrough helped keep it managable in addition to emend given on the chemo days. Maintaining your hydration and nutrition is one of those vital things that we can participate in and it will make a big difference in how you heal.

The decision on which chemo drug and how much to use is very individualized. Jack had 4 cycles of cisplatin, which was a team recommendation from our CCC in (consultation with 2 other facilities)and that was based on the fact that his cancer was poorly differentiated, extrascapsular and involved 7 lymph nodes. They monitored his blood counts all the time and the 3rd and 4th cycles were delayed but ultimately given. He still has ups and downs with his blood work that will probably continue for several months but they are monitoring it and treating it as needed.

Jack has a high frequency hearing loss that is getting better. Mostly he complained that his ears felt full, ringing was an issue at times, and hearing like he had a bag over his head. Some of that was also the radiation. The hearing loss does not interfere with his ability to talk on the phone or be in most conversations and he feels it's a good trade off even if it's permanent.

Someone on this site once posted that "nothing interferes with your quality of life quite like death" and Jack has taken that to heart. He's had surgery, radiation and chemo and side effects come with all of those treatments, but his swallowing came back good enough for the PEG tube to be removed, his taste came back for most things, he's off the pain meds, and he's back working 30 hours per week. He's tired but happy to be alive to complain about it.

Hang in there and let us know how it's going. Ask your doctors their rational for doing one treatment over another but remember that every case is different and those individual details are what determines what will work best in your case.

Regards JoAnne

Stoj,
Hang in there...
For the gagging on the phlegm, Tom uses a suction machine. I got the idea from posts here. You can rent one through a medical supply place. Ask your doctor to write the order and insurance will cover it (or if not, ours is $40 a month). It has really helped Tom. Our doctor explained that the phlegm gets particularly bad near the end of treatment and in the week or so just after because the radiation burns in your throat are seeping. Some say a humidifier helps, but we've not tried that. We're nearly three weeks past the last radiation treatment and he doesn't have nearly as much phlegm now and only uses the suction a few times a day.

As for tube feeding, he has always done bollus feeding, not gravity. No bag or pump is involved. Tom uses the bottom of a 60cc syringe like a funnel, inserts it into his tube and pours a can right into the "funnel." He doesn't use the plunger on the syringe. He follows each can with two cups of water into the funnel to flush the tube. He's eating nothing by mouth and each day takes five cans of Nutren 1.5, made by Nestle. It has 375 cal per can. tHe does one can, sometimes one and a half, about four hours apart to give it time to digest. Water is key. He makes sure he takes at least 10 cups per day.

Joyce

Dear Stoj, I wanted to echo Joyce's husband's method of tube feeding- John uses the same technique, altho he warms the ingrediants first. for a change of pace and to help stay regulated, he also has coffee, Welch's Concord grape juice and beer through his tube. [More calories and more liquid] He also uses Benefiber powder and NaturAid weight gain powder mixed with liquids. The tube feeding will get faster and easier and will keep you out of trouble! Amy

Hey we often wondered how you fed thru the tube without a bag. Interesting, so can you feed faster or do you have to pour it in slowly?
Any concerns of it causing dumping?

Tim my folks also warmed the cans a bit by sitting them in hot water to take the chill out.

When my Dad was dehydrated the nutritionist said we could put Gatorade (has electrolytes and lots of cals) thru the tube; make sure you flush well so it's not sticky. (He didn't try it, stuck with the cans and water). Our nutritionist wasn't a fan of putting anything but cans and water in the tube; yet I've read that people put all sorts of things thru it.

My Dad was told to avoid caffiene and alcohol.
There is a med called Domperidone; it helps move the feedings around better and prevent nausea. My Dad didn't feel it helped; he only took it for a couple of days. But it might work for you.

We found by measuring out the water in a jug every day is a good way to ensure you are getting all or close to what the dr recommends. Otherwise it's easy fool yourself.

Keep up the good work Tim!
Lisa

Wow,

Beer through the tube. Haven't heard that before. Yesterday was a pretty good day as far as eating goes for me. Managed a bowl of porridge, ice cream, a can of potato soup and a few bites of talapia fish orally. I also had a can of nutra 2.0 through the tube. Hopefully my weight will see a little bump if I can keep this up. Pain Meds are helping. And the flem (sp)gagging/nausea although present didn't seem as bad

Anyways I'm off for my next xrt only 12 left after this one. Thanks for the great advice I really appreciate every comment.

Tim Stoj

To Tim and Lisa:
Lisa-pouring directly into the "funnel" inserted into the tube is easy. Just pour 1\2 a funnel full at a time and let it slide down.The important thing is that the stuff going in is thin enough not to cause a blockage. So if you are pureeing stuff-get the lumps out- and thin it down. Finish with water to flush the tube.
Tim- beer has calories -if you like beer and John does- and it's part of his "old life". Don't be afraid to try anything that will keep lots of calories flowing. You are doing well so far. Keep it up! Amy

Amy,

Thanks for the insight. Another long day is over and I'm getting ready for bed. I made the 1300 Calorie shake today. My wife said it tasted great. I wish I could taste it, I did manage to get about 8oz in me though. My throat is really sore right now, tough to swallow even water. I had the patch bumped up to 50MG so hopefully that will take the edge off a bit. I was trying to stay away from the morphine because of my constipation issues but I gave in and had some of that too. It is such a terrible cycle. Take the pain meds and get constipated then take laxatives until I finally go. The only thing that worked for me lateley is magnesium citrate and that generally gives me the runs for a couple of days. My RO has precribed another laxative called Lactulose Solution, has anyone used it? If so did it work?

Anyways just wanted to say thanks for all your help.

Tim Stoj

Tim try taking stool softeners 'daily' this might help. My Dad also stayed away from pain meds as much as he could because of constipation. Do your cans have fibre? that helps also.

Tim what is a 1300 calorie shake? sounds good!

Amy thanks; that's interesting.

Hey Tim you are almost finished; way to go! Just remember, it does get better.

I had met a real nice man online who had finished his treatment a few months prior to my Dad's treatment; and he told us many times that it does get better. And he sure was right!

Lisa

Lisa,

I found this recipe on one of the other forums. I htink it's been passed around quite a bit, but I do remember someone saying that it had 1300 calories in it?. My wife loved it, but I couldn't taste it.

2 cups ice cream
1 cup whole milk
1/2 cup half-and-half
1 package Carnation instant breakfast
1 tablespoon malted milk
2 tablespoons Ovaltine

I'm already on stool softeners and they aren't working for me. My cans of food don't say anything about fibre.

Tim

This thread has gotten fairly far off the initial post (the other posts are all good info, so this is not a complaint) but I wanted to get back to the first issue.

If you have existing hearing loss or have a reason to fear hearing loss from the use of cisplatin, you can get the newer drug carboplatin either as a monotherapy or in conjunction with a taxane (e.g. Taxol). Although some literature seems to show a slightly better result in certain types of cancer with cisplatin, it is far more toxic (e.g. kidney toxicity, ototoxicity and is strongly emetic) . Our medical oncologist (at Hopkins) whose specialty is head and neck cancer is finding as good results with carboplatin, which she rotuinely gives to those with hearing or kidney issues -- or who cannot tolerate cisplatin for other reasons (severe nausea is common).

She told us that the radiation is the "workhorse" in the treatment and chemo adds about 10-15% effectively, primarily as a radiosensitizer. The difference in efficacy between the two platinoids is at worst represents a very small percentage of the treatment.

Ask about carboplatin -- my husband had it and found, with the new serotonin anti-nausea drugs, chemotherapy to be (in his words) a "non-event. " The radiation and te amifostine he took were far more rigorous. His ENT feels his getting carbo is one reason he made it through treatment in relatively good shape, able to eat throughout etc.

Gail Mac

Gail,

Thanks, I meet with my MO next Monday so I will definately be bring up the carbopatin.

Tim Stoj

Tim,
Gail is absolutely correct in the potential of Cisplatin to cause permanent hearing damage but it is fairly rare. What is more likely is radiation damage to the eustacian tubes causing fluid buildup in the ear canals. That happened to most of us and it was like being underwater or your ears not popping when making a change in altitude. I suffered with that for quite a while during and post treatment until the tubes healed up and started functioning/draining again. They could see the fluid buildup on the MRI's. I had physical pain as well.

Always discuss and hearing changes with your MO. Ringing in the ears and difficulty in hearing should be reported immediately.

When I complained of serious hearing changes after two cisplatin treatments, the older MO immediately switched me to carboplatin and taxol (goodbye hair). He said many years ago he had a patient who ended up deaf as a post, and that less than 1% of patients ran that risk. The carboplatin/taxol treatments I then received seemed to do that job as I am closing in on five years and had my hearing tested recently and was found to have no loss at all.

Gary,

That's what I initially thought (I read a previous post) until I spoke to my RO. He says that my ears are getting a very minimal dose of RT and he felt it was more related to the cisplat. My concern is that it's not usually wise to jump horses mid race...anyways I meet with my MO on Monday and will lay it all out there and see what we come up with.

Tim

I met with my MO today and he scheduled me for a heaing test on Thursday morning. His thinking is if my hearing isn't normal for my age then he is going to switch me to carbopatin. Are the side effectd very different from Cispalt?

Today was my 25th day of treatment, only 8 left. Then I can start the recovery process.

Tim, I was switched to Carboplatin and found it much less difficult in that I did not have to measure urine output, and I didn't need anti-nausea drugs. By that time my mouth was a mess anyway, so I don't know that there was any change with regard to that. In my case, Taxol was also added, which made me temporarily bald, but seemed to have no other side effects.

I am very glad you are being tested. One's hearing is nothing to gamble with.

Hey Tim you are almost done. Keep up the good work! and thanks for posting that high cal shake recipe.

Lisa

Lisa,

Your welcome to the shake recipe, have you tried it yet?

Thanks for the encouraging words.

Actually, hearing changes are a fairly common side-effect of cisplatin, and several web-sites (e.g. that of M.D. Anderson) recommend against its use in patients with existing hearing issues (also, thise with existing kidney problems).

One paper states, "Ototoxicity has been observed in up to 31% of patients treated with a single dose of cisplatin 50 mg/m2, and is manifested by tinnitus and/or hearing loss in the high frequency range (4,000 to 8,000 Hz). Decreased ability to hear normal conversational tones may occur occasionally. Deafness after the initial dose of cisplatin has been reported rarely. Ototoxic effects may be more severe in children receiving cisplatin. Hearing loss can be unilateral or bilateral and tends to become more frequent and severe with repeated doses. Ototoxicity may be enhanced with prior or simultaneous cranial irradiation. It is unclear whether cisplatin induced ototoxicity is reversible. ...Careful monitoring of audiometry should be performed prior to initiation of therapy and prior to subsequent doses of cisplatin." Note that radiation exacerbated the problems. Cisplatin apparently causes damage to the cochlear hairs within the inner ear.

Another paper found serious hearing issues in about 25% of patients treated with cisplatin and radiation for nasopharyngeal cancer, and about 45% experienced some hearing problems during treatment.

Carboplatin has far less ototoxicity (though some has been reported) as well as far less nephrotoxicity. It does, however, cause depressed blood counts (as does cis-) and is also a strong emetic. My husband used Zofran and Anzemet as anti-nausea drugs, and says that his chemo was a "non-issue" compared to the physical demands of the radiation and its side-effects. I might add that his medical oncologist recommended 7 small doses (one a week) rather than 3 larger doses to further reduce side effects as well as maintain a more even concentration of the radiosensitizing drug.

Gail

Gail,

Thanks for the info, the more I read the more I would rather have the carbo. We'll see what my hearing test results are.

Tim Stoj

Stoj, I had 2 Cisplatins and I told my Chemo Dr re my hearing problems and he switched to Carboplatin. I also had 35 concurrent IMRT radiation treatments and like you was sick as a dog. My Rad Dr didn't give me a tube which I didn't want in the first place but I wish I had. I am 1 month out of treatment and have finally come out of that tunnel. I have gained back 5 pounds, take no meds and just have the non life threatning side effects to deal with; dry mouth, no taste and tired too soon. I now drink Carnation Instant Breakfast VHC which has 560 calories per 8 oz, a godsend.

Thanks, I'll look for the Carnation VHC. I have the regular already but not the VHC. Today has been a bad day for me. I was out of bed for my rad treatmnet only. I threw up my bfast, managed a small bowl of soup for lunch and a tube feeding for dinner. All in all probably less that 1,000 calories. Man this nausea is really kicking my butt.

Tim Stoj

Hey Tim it's great that you can still eat by mouth a bit. Don't force it. My Dad was having less then 700 cals a day with the tube.

Rest when you need to and stay hydrated!

Hey I haven't made that high cal drink yet; when I told my Dad about it he made a face at me ha ha; (well he's eating anyhow); and Tim I sure don't need to drink it LOL!

Keep up the good work; remember it will get better!

Lisa

Stoj, It's easier and cheaper if you order the VHC through your pharmacy, like Walgreens or CVS. They can get it by the case in a day or 2 but make sure you tell them VHC and 560 cal. You can also put that through the tube. Do the math, only 4 cans will give you plenty a day. I do 5 and I walk around stuffed all day. I do the vanilla and it's just like Ensure Plus but w/ 210 extra cals per can. The Nausea was my downfall also. I wish I had found the VHC much sooner. Good luck and get this stuff ASAP...it will make a positive difference.

A couple of quick updates:

I had my last chemo today; I had the carbo instead of the cisplat. My MO thought that given the tinnitus (sp) I still have occasionally he didn't want to risk my hearing any further and I agreed with that.

I only have 2 XRTs left and must admit from everything I've read here I'm more than a little concerned about the next coming weeks. It seems everyone had it the worst the weeks after XRT.

And to David I did buy the VHC stuff. I posted more in your great products message.

Tim Stoj

Congratulations on the last chemo and almost next-to-last XRT! It's true that for most people they feel just as bad or worse for couple of weeks after radiation ends, but at least you're done with going to radaition every day, the mask, etc. You can just rest. And spit phlegm :rolleyes:

I actually ended up in the hosptial with a fever from a mysterious infection for about 10 days after the end of radiation--my WBC and RBC was so low from chemo they kept me there until the fever went down and the RBC started looking like it would increase. The fever came on about 2 days after radiation ended. They never did really figure out entirely what caused it and I think it was just my body saying "enough"! I'm telling you this as a basis for downward comparison so you can feel like your next two weeks are better than that!!!

Nelie

Hey Tim,

We hadn't heard that the weeks after were the worse till about week 5 or so of treatment; a dr made mention of it. Well that sure concerned my Dad. However here's how it was for him. The last week of radiation and the week after were the worse; he had lot of phlegm; and they were the only 2 weeks he took pain meds throughout his entire treatment. From there on he started improving. You'll be amazed how every week you can see and feel changes for the better.

By the end of 2 weeks out from treatment he was 'starting' to test foods by mouth again.

Like Nelie pointed out; you won't be going to rad daily, so just being in the comforts of your own home and relaxing more will help.

Hang in there!
Lisa

Tim, my worst week was the week AFTER treatment. My doc's had warned me though but I still wasn't prepared. I lost 10 pounds that week alone and spent 3 days in the hospital. As lisa says after that it got better and by week 3 I considered myself out of the tunnel and was off all meds and drinking 5 cans of that VHC uck and noe at almost 6 weeks I have gained 6 poundes back. It will be dark for a while but there IS light at the end of that tunnel. I guarentee it.

David

David,

Why did you wind up in the hospital?

Tim