I am new to the list. Just finished week 4 of 7 for throat cancer (base of tongue, HPV-related, stage 3) of RADS and two mega doses of CISplatin. I am blitzed and very spacey.

I would like to ask about reactions to CISplatin. Everything seems a bit unreal and my hearing is impaired - a lot of white noise. Have others experienced this? I did during my first week and my hearing improved during week 2 but I am concerned: My chemotherapist did say some can go deaf from CISplatin. Please share stories if you have them.

Thank you! DavidDH

You need to talk to your doctors about this ASAP.

From what I recall, it was (should still be) standard to get a hearing check for a baseline before starting certain chemo treatments, including cisplatin and carboplatin. (I had the carboplatin.) They do have a known side effect of hearing damage, and so you'll want to talk to your oncologists to let them know what you're experiencing, and decide as a team if the treatment is worth continuing or not, if your concerns are within the realm of normal or something beyond normal. Not something folks here could diagnose, even if we were any kind of medical professionals.

And ((hugs)) ! Halfway through rads is really good! Hang in there!

Thank you Kristin!

Welcome to OCF, David! Im so glad you have discovered our online forum for helping oral cancer patients, survivors and caregivers.

Being in week 4 out of 7, you are right in the middle which is where most patients will start struggling. Im very sorry to tell you, cisplatin is known to cause hearing loss, usually its high frequency hearing thats affected. Unfortunately, cisplatin side effects with hearing is usually a permanent problem. Any patient who has any side effects (no matter how trivial it may seem) needs to report it to their nurses and doctors right away. Please dont worry!!! This isnt something that requires a midnight call into the doc's emergency line but definitely make sure you tell your doc on your next visit before they give you another dose of cisplatin. The type of chemo can be changed to something else, usually its carboplatin. Smaller, weekly doses are better tolerated than the 3 "big bag" method of getting a bigger dose of chemo every 3 weeks. I had the 3 big bags and boy did it hit me hard!!!! I had such a hard time with it that my second dose was cut in half and the third dose completely eliminated. Over the years Ive noticed many who do the 3 big bag method like I was supposed to have often end up not having their 3rd dose. Ive interacted with thousands of oral cancer (OC) patients and survivors from all over the world but mostly in the US, not a single one ever went deaf from cisplatin or their OC treatments. To me, patients going completely deaf sounds a bit extreme!

Hopefully you are doing ok with your intake. This is one of the most important things you can do to help yourself get thru treatments and recovery as easy as possible. Every single day you should be taking in a minimum of 2500 calories and 48-64 oz of water. If you can do more calories daily, for example 3000, 3500 or more that will help you. I cant stress enough how important intake is and how quickly OC patients can go downhill and end up getting dehydrated or malnourished. This happened to me a few times and its no picnic especially when you already feel horrible. The water is especially important around chemo days. Even though patients get extra fluids along with the chemo, one chemo days push yourself to drink more to help flush all that poison out of your system. Some patients do this the day after too and Im sure it can only help the patient to avoid becoming dehydrated. Chemo can be very hard on the kidneys too so pay attention to any changes and report them to your medical team.

If you have questions or need help, you are among friends here. Just ask and we'll do our best to help.


Main OCF Site, Understanding OC

National Cancer Institute, Cisplatin and Hearing Loss

ChristineB! I can't thank you enough. My ears are both ringing and I feel my pulse deeply. I contacted my chemotherapist, sent her some of your ideas and the link. I've had big cisplatin #2 already but am hoping to divide #3 into two or three parts.

Once again, thanks so much,
DavidDH

You're welcome, David! Im so sorry you are having hearing issues!!! Ive known many OC patients who have had noticeable hearing problems after having cisplatin. With the 3 big bag method of cisplatin, almost all patients have had adjustments made to their final dose, some had reductions on their 2nd dose. When are you due for your 3rd dose?

Cisplatin can be hard on the stomach too! After struggling with it and having an unbelievably bad reaction to the anti-nausea meds, I had a very difficult time which is why my cisplatin doses were so drastically reduced. Im hoping you already have anti-nausea prescriptions for zofran or compazine to help counter-act the nausea. From what I remember back in 2007 when I had cisplatin, its usually about 5-7 days after the 2nd cisplatin dose patients get hit with nausea from the chemo. I suggest talking with your doc about this but, Id advise you to begin taking the anti-nausea meds about 5 days after the 2nd cisplatin even if you have not had serious issues with nausea. Continue taking it around the clock for several days. After about 4 days of the anti-nausea meds try taking a half dose to see if you can stop taking it. Pay close attention to any nausea as this can and will sneak up on you making you sick to your stomach so you struggle to keep down even a sip of water. At least thats how I went thru it, Im hoping you fare better than I did and dont have to deal with controlling nausea. Everybodys different, you never know, you could be one of the lucky ones who dont have many of the side effects that plague most going thru rads w/ cisplatin.

Treatments are HARD!!! At OCF, we try to help everyone to get thru their treatments weather its chemo w/ rads, surgery or both. Going thru similar experiences helps us to help others. Sometimes all this medical stuff can be overwhelming. Dont be shy about asking your doc for anxiety meds if you start having trouble mentally managing what you are going thru. Many OC patients and caregivers as well need some temporary help to get thru some dark days or weeks. Many of us have been shockingly hit out of the blue with a serious disease we had never even heard of. Its ALOT to process. Just remember, now that you have found our OC message board, you have people to help you. Its ok to lean on us if you need to. We understand what you're going thru.

Hang in there!!!

DavidDH,

I’ve had tinnitus before cancer, but through the years I’ve noticed the tinnitus increased, and wasn’t hearing as well, then I started cupping my ear, usually right, to hear better. One day I mentioned this to my cancer surgeon, otolaryngologist, who sent me to their hearing specialist, otolaryncologist, who did an exam and hearing test in a booth, by his associate.

They came back and said I have 80% hearing in my right ear, which is fairly normal for my age, but my left ear I only have 50% hearing, and reason for my leaving forward and cupping my ear, which is usually with high pitched noises. They said they usually put the hearing aide on the good side, and was sending me to their audiologist (it’s a big CCC amongst others). I never went to see about a hearing aide. Lots of people had complained about theirs on-line discussion groups, but my main reason was the cost, over $2,000 or more, so I’m still cupping my ear five years later lol!

I never had pre-treatment testing, and should have .The hearing specialist blamed radiation and my surgeries. I had both sides radiated once, and 4 more times on my left side, and 5 neck dissections on my left. My ENT blames radiation lol. I initially had TPF induction chemo, and other chemos other times. The hearing dr said if it was the chemos it wouid have been both sides with hearing loss.

I hope yours resolves. It may be good to have your hearing tested, and as mentioned, they can change chemo’s.