I experienced significant high frequency hearing loss from my first round of cisplatin. I am wondering how this was dealt with for those others who experienced it, and if anyone has any advice.

Im so sorry this has happened to you! Immediately discuss this with your medical oncologist. They need to change the chemo to another type. Do NOT get another dose of cisplatin. Usually they will switch a patient in this situation over to carboplatin (sp?).

I went back and reread your first posts. When I responded to your post on 8/13 and warned you about cisplatin and hearing loss. Make sure you have a long talk with your doctor so you are not given another dose.

Hi Ed H

What Christine said.

Hearing loss is cumulative and dose dependent so it will get worse if you continue with cisplatin. Carboplatin (note correct spelling Christine )is a commonly used alternative from the same family.

Karen

I mentioned to my MO that I had some hearing loss from a previous ear infection. He immediately changed from Cisplatin to Carboplatin. He has been working with these two for decades and felt there was little difference between them.

Because Cisplatin came out later, most doctors recommend that but both have been on the market for over thirty years.

Yes do tell your MO ASAP. I remember mine saying that he would switch me to Carbo if I had ringing in my ears from the Cis but I didn't recognize the "ringing" until after my 3rd Cis so I do have permanent high freq hearing loss in both ears. I haven't gotten aids yet but maybe some day I will but it will be me kicking and screaming for sure!

Thanks everyone. My doc wants to use half dose of cisplatin for this tx (my last chemo), says the half dose will prevent further hearing loss. He feels carboplatin is not as effective at reducing risk of recurrence. If anyone has any thoughts or info I would appreciate it. Thank you.

Ed, that sounds sensible to me. Glad that you are so close to the end of your treatment!
Maria

First off I'm not a doc of any kind...with that in mind and concidering that your HPV+ and you have already had 2 big bags of cis and that you already have experienced hearing loss I, as in my opinion only, would not opt for more cis of any volumne, absent convincing proof that carbo would not be just as effective.

Ed, if it were me, I would NOT allow that doctor to give me any more cisplatin, not even a half dose. If you have already suffered hearing loss it could make it worse. How can that doctor tell you it wont? That does NOT sound correct at all. If he insists you do the half dose I would ask him if he would be willing to stake his reputation on this and put it in writing that he is 100% certain by you taking the half dose of cisplatin it will not further your hearing loss. I would bet anything he wont step up and back his opinion with a letter. Carboplatin has been shown to work as well as cisplatin so I dont understand this doctors insistence on you continuing with cisplatin when it has already caused you problems.

Get your hearing checked to see how much of a loss you already have and then get it checked about a week after the 3rd dose. That is IF you really want to risk any more hearing by this guys promises. If he can guarantee you wont suffer any more loss only then should you allow any more cisplatin. remember, he works for YOU!

Be very careful!!!!!

DavidCPA, if you google 'head and neck cancer cisplatin carboplatin' you will find some oldish studies and retrospective analyses on this question. I have not sorted through them properly but they seem to infer that in some cases the cisplatin may be better.
Maria

Maria,

Cisplatin has been the "Gold Standard" chemo of choice for OC for many years and the comparison to Carbo is when all else is equal. (no I haven't read those studies, at least in a long while) My point is that now all things are not equal as he and his doc's know that Cis has damaged his hearing permanently and adding more Cis can only, in my opinion, increase that damage so in this case Carbo now becaomes the chemo of least concern.

Thanks everyone. I will f/u with my doc. My protocol is two doses of cisplatin three weeks apart. The doc reports that the half-does should have very little chance of causing further hearing loss. He has completed published research on this topic and is a nationally recognized expert r/t HPV-related oral cancers, so I hope he is right. I could not find clear/definitive info on this subject in the literature, but doc's have access to peer-derived info, research presented at conferences, and other resources I cannot access. I will post the outcome and how it works out for me. Thanks again.

Ed, yes, that would be very helpful if you let us know the results. Also, ask for a copy of his article - doesn't hurt to ask. Regarding access to journals, if you have doctor friends OR university students / staff, they will be able to pull articles for you via their institution's subscriptions.

Hi Ed,

I have access to most articles (abstracts at least) and can find nothing that tests whether smaller doses causes no further damage. I was under the impression that ANY further doses would cause further damage but maybe not as much???

What jumps out for me is that your doctor is dismissing carboplatin which is proven in this setting, but is prepared to "underdose" you with cisplatin. Does he know this dose works? And if so, is he confident the effect would be better than carboplatin? This is the question that I would be asking.

Have you already had two doses of cisplatin? There are a few studies where patients could not complete their planned 3 doses and their outcomes were quite similar to those that did all 3.

My husband had weekly Cisplatin and now has permanent hearing loss. It did not show up until his last week of treatments.

It has been normal for doctors to switch people off of Cisplatin immediately upon these kinds of problems to Carboplatin. As you can see, many here have had that experience and are doing fine. I have searched the medical databases that I have access to (all the major ones) and can find 0 zero articles that speak to dealing with this by reducing dosage. I don't know your particular situation, I am not a doctor, but if I were you I would not do this.

I see the possible ramifications as possibly being incomplete primary treatment, and or loss of hearing completely. Not everyone that takes Cisplatin has issues with it, but every doctor I have ever discussed this with say that they remove their patients immediately as soon as the ringing in the ears issue comes up. If there were not a suitable alternative, then I could understand the doctors insistence. In this case I do not.

Remember that you are the controller of your treatments, though we all know less than our treating doctors as a rule, and like it or not have to put our faith in them. But that does not mean that they know everything. If your doctor has a peer reviewed scientific article that he would like to share with the foundation substantiating his treatment idea, I would be most interested in reading it and adding it to our datable of relevant articles on the OCF web site.

This is an interesting discussion and points up the principal that something that sounds reasonable should be followed on by actual data - if available.

I believe I suffered *late* onset side effects from my Cisplatin (3 doses, third one nearly killed me, in ways unrelated to this thread). It was after my treatment was complete that I developed peripheral neuropathy in the soles of my feet, the infamous 'electric tingle' when looking down at my toes, and, hyperacusis (over sensitivity to 'clanging' noises: http://en.wikipedia.org/wiki/Hyperacusis ).

In my case, however, the nerve damage was temporary and these symptoms have all for the most part abated.

Thanks to all who have responded. I, too, had the hyperacusis mentioned above (in my case, oversensitivity to loud noises in general and some in particular) along with increased tinnitus and high frequency hearing loss. My treatment protocol was two rounds of cisplatin, at the beginning and again three weeks in. The hearing changes were evident within four days of the first treatment.

I decided to go with my doctor's recommendation re: a second, lower dose of cisplatin. My tinnitus worsened slightly and the hyperacusis came back, but last time it subsided somewhat so I hope that may happen again. I explored his support for this approach in more detail and it relates to the results they are getting with HPV BOT cancers at the Cleveland Clinic, which is encouraging at 94% at this point in their study. They are reluctant to use the carboplatin, it seems, because it has not matched this track record in their experience. However, knowing what I know now, if I was starting again I would probably opt for the carboplatin, but in my case the damage was done after the first treatment.

On the plus side, chemo is done and I've only two more rad tx's to go. The small lymph tumors are no longer palpable or visible on PET and CT scans, and the primary BOT tumor and a 4cm neck metastasis have both shrunk by more than 50% in size and metabolic activity. The mucous is hell and I miss taste and normal eating, but as a friend pointed out, I am blessed to have a form of cancer that responds to treatment so that I will be able to reminisce later about how rough the treatment was. I wish everyone out there the best and will continue to be actively involved in the forums, which have been a tremendous source of support and reassurance--THANK YOU ALL!

I finally made my way to the boards. I recieved Cisplatin last Monday and I am still in its depths. Can anyone give a timeframe for the nausea to go away. First few days weren't bad,then it hit me like a ton of bricks. I can take two bites and be full. Usually the sickness comes late at night. Hate to be bothersome and call the the docs over the weekends but i'm borderline dehydrated if today doesn't go better. Thanks for the info ed. those percentages are promising. i had been debating carbo.
i start 8/35 rads tomorrow and not another chemo till the first.
Ear pain is finally gone. Thats a blessing. now if i could just get some nutrition in me.

@JAMOS...Are you experiencing bloating/gas rather than nausea? The cisplatin is usually administered with some long-lasting anti-nausea meds during the infusion along with a prescription to be filled for other anti-nausea meds to be used at home as needed. Bloating/gas is a different matter and apparently not everyone experiences it. What we found helped with bloating/gas is simethicone (CVS Pharmacy has a higher dose in their brand)...along with a dose of milk-of-magnesia. Hope you find some relief soon.
More info on simethicone here... http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000747/

Try Boost VHC which has 560 cals in a small 8 oz can. This means you have to swallow less to get the necessary daily nutrition. Also you better drink plenty of water, like 48 ozs a day or you will end up in the ER getting fluids. Some and not nearly enough, treatment facilities administer IV fluids as a part of this Tx and a port comes in handy. I went to the ER 3 times during my Tx (all on weekends, of course) all because I didn't drink enough water. Dehydration also leads to the Big C which speaking from very painful experience is not something you want to add to your Tx concerns.

You might want to post this as a new topic as your post is likely to be overlooked here. My doc treated me aggressively with anti-nausea for 4 days after each chemo and had almost no nausea as a result. Suggest pressing your doc for further meds until it passes. Everyone is different in terms of how side effects affect them; for most the peak nausea seems to pass within 4-5 days. Definitely call the doc and see if more can be done. Treatment is rough but we can get through this. Good luck!

Watch your intake! Dehydration can cause far bigger problems while you are having chemo with your radiation. Chemo can be very hard on the kidneys. You MUST flush it out with at least 48 oz of water every single day. Dont think you can skimp one day and make it up the next, the next day never comes.

Your nutrition is what will make it easier or harder to get thru this. Every single day you must get a minimum of 2500 calories. Not sure if you have a feeding tube or not but you still need to keep swallowing every day anyway, even if it hurts.

Dont worry about bothering doctors on the weekends. They work for you. If you need fluids you can get them in the chemo lab with your doc referring you over for hydration. You will instantly feel alot better when you get a couple bags of fluids. Dehydration can make you feel awful. Dont suffer in silence, call the doc. If you feel you arent getting enough daily speak up. Tell the nurses or your doc. This is very very important!!!! You must have open communication with your medical team. In order to help you they need to know if you are struggling and whats going on with your side effects.

Dont be embarrassed to ask for help either, you arent the first and wont be the last to go thru this. Your team should be able to help get you back on track with nutrition and hydration. If your facility has a nutritionist, it may be a good idea to speak with them to help you with your diet.

As far as nausea goes, take the anti-nausea meds even if you think you are past the throwing up. Thats where I got hung up, I would think i was ok and would skip a dose then I was sick as a dog and couldnt keep anything down. If you are doing the 3 big bag method of chemo it will usually hit you 5 - 8 days after you get the dose of chemo. I am guessing that you will feel the effects of it for 4 - 6 days then you will be ok again until the next dose. Make sure to tell your team everything! They will adjust the dosage partly depending on your reaction to the chemo.

Hang in there and stick with us, we will help get you thru this.

I read from that in a study, Carboplatin was not as effective as Cisplatin for SSCHN. There is probably another study, that shows it was just as effective.

I looked back, and only found so far, comparisons with PF induction studies with cisplatin vs carbopaton. One said cisplatin was better, and anothet said there was slight improvement with carbo. It's all fuzzy math, and didn't even bother writing the info down. These are from the 90's.