Hearing Loss & Tinnitus - caused by Cisplatin - now hesitent to do last round of chemo
My husband, Joe, has 6 more days of radiation and 1 more chemo (Cisplatin 100mcg/m2) to go. He has developed all of the typical side affects posted here and hopefully can get through the rest of treatment and onto recovery. (I'm very nervous about us managing all of the side affects post-recovery, but we did managed this far, so I will cross my fingers and hope we can continue to do so post treatment).
In any event, my real question today is about hearing loss in both ears (low frequencies are hard to hear and loud noises cause his ears to ring more), probably due to the Cisplatin which is making Joe think about not getting the last chemo (scheduled for next Tuesday).
The radiation oncologist said the last chemo was a "swing" chemo and maybe not necessary. We raised the question to the medical oncologist who felt the last treatment was necessary. Both oncologists are at Sloan Kettering, and this is not the first time the two of them have disagreed. In any event, now that Joe heard from the rad onc that the last chemo is not 100% necessary, he is leaning towards not getting it, thinking he can salvage some of his hearing before he goes totally deaf.
I asked the med onc about switching chemo drugs or reducing the dosage, but she poo-poo'ed that suggestion. I asked both oncologists about having Joe go for a hearing test/ENT appointment now, so we can make a more informed decision, but both of them poo-poo'ed that suggestion, saying it wouldn't matter at this point.
I've read on this board and the web that there is a 50/50 chance the hearing loss is permanent and some people never get it.
Was wondering what other people's thoughts here were on it.
Thanks for everyone's help.
Suzanne
(Hope soon to be help to others, and not just telling our sob story).
Comments
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hearing loss
My husband had three rounds of Cisplatin and 35 days of radiation but, of course, the Cisplatin is the source of the hearing loss. It is a recognized potential side effect.
Jim reported tinnitus about a week after the second round with some hearing loss about the same time. Tinnitus and hearing loss continued after the third round of chemo; Suzanne, no way would Jim have considered skipping the third round of treatment. Hearing loss is just that and as a sufferer of tinnitus I can sympathize with how discomforting that is, but to consider skipping an offered dose of chemo because of the possibility of permanent hearing loss was just not even in our realm of thought at any time.
I am disturbed your radiation oncologist even weighed in on this: this is a chemo issue.
We are now two months past treatment and tinnitus is fading and hearing loss is improving very slowly.
Good luck with whatever you decide - I vote for the chemo.0 -
CisplatinNoellesmom said:hearing loss
My husband had three rounds of Cisplatin and 35 days of radiation but, of course, the Cisplatin is the source of the hearing loss. It is a recognized potential side effect.
Jim reported tinnitus about a week after the second round with some hearing loss about the same time. Tinnitus and hearing loss continued after the third round of chemo; Suzanne, no way would Jim have considered skipping the third round of treatment. Hearing loss is just that and as a sufferer of tinnitus I can sympathize with how discomforting that is, but to consider skipping an offered dose of chemo because of the possibility of permanent hearing loss was just not even in our realm of thought at any time.
I am disturbed your radiation oncologist even weighed in on this: this is a chemo issue.
We are now two months past treatment and tinnitus is fading and hearing loss is improving very slowly.
Good luck with whatever you decide - I vote for the chemo.
Suzanne,
Hey that's what we're here for to listen to each other's stories and help each other out. Based on my experience I'm going to disagree slightly with Noellesmom, but you gotta do what is best for you and Joe. This is just my experience.
I had SCC right tonsil with mets to 11 nodes, stage 4 and very aggressive. Treatment was neck dissection, 35 rads and 3 concurrent Cisplatin treatments. Docs told me surgery and rads were primary treatment with chemo accounting for 20% of treatment. ONC warned me about side effects from Cisplatin and I was told to keep him informed. I had significant hearing loss along with tinnitus after round 1 of chemo and ONC ordered a hearing test. It worsened after round 2 of chemo. He cancelled 3rd round of cipslatin and substituted Erbitux for the last 2 weeks of treatmnent (3 rounds of Erbitux). He indicated that the first 2 rounds did 80% of the work and that it wasn't worth the chance of going totally deaf for that last round.
I am 7 months post treatment and doing great. I do have side effects though including tinnitus and still sginificant hearing loss. I have been told hearing won't come back and have also been told I need hearing aids. I'm doing without them right now til I'm out a year and then I'll decide. Overall it's not bad and I've learned to read lips of "soft talkers". When I'm in noisy areas it's the worst as background noises are louder than conversational tones. I've gotten used to tinnitus, but it's still there.
My suggestion (based soley on my experience) would be to see if other chemo drugs could be substituted for the Cisplatin, especially since this 3rd round is a "swing" round. Just my 2 cents worth. Good luck however you decide to go.
Positive thoughts!
Greg0 -
Swing Chemo
Suzanne -
I was in the same boat as your husband. After my first round of Cisplatin, I went in for a base line hearing test. It determined at that point that my high frequency hearing was already shot, but I was hearing normal conversational tones. I took the chance and and has a 2nd round of Cisplatin, followed up by another hearing test. After the 2nd test, they were able to document hearing loss in the conversational tones. Due to the documentation, they agreed that my 3rd dose was not necessary (since I only had 3 more rads to go).
Loud noises aggravate my tinnitus, as do some other sounds, like a violin or static from the radio. I have noticed a decrease in the severity of my tinnitus, so I hope either it will go away or my brain will "adjust". The hearing loss is permanent, but it's not debilitating. I would strongly suggest a hearing test to at least see what he can hear at this moment.0 -
Cisplatin vs. CarboplatinGraceLibby said:Swing Chemo
Suzanne -
I was in the same boat as your husband. After my first round of Cisplatin, I went in for a base line hearing test. It determined at that point that my high frequency hearing was already shot, but I was hearing normal conversational tones. I took the chance and and has a 2nd round of Cisplatin, followed up by another hearing test. After the 2nd test, they were able to document hearing loss in the conversational tones. Due to the documentation, they agreed that my 3rd dose was not necessary (since I only had 3 more rads to go).
Loud noises aggravate my tinnitus, as do some other sounds, like a violin or static from the radio. I have noticed a decrease in the severity of my tinnitus, so I hope either it will go away or my brain will "adjust". The hearing loss is permanent, but it's not debilitating. I would strongly suggest a hearing test to at least see what he can hear at this moment.
My husband is a truck driver. He would not be able to pass a DOT physical with any appreciable hearing loss or other neurological side effects seen in Cisplatin.
When we discussed this with the Drs. they recommended he be given Carboplatin which has less side effects and offers the same type of boost to radiation treatment.
He had Carbo/Taxol chemo and did not experience any hearing loss. He did, however, lose every hair on his body which is now growing back but we laughed becuase he wasn't predicted to lose that much hair.
Maybe his last treatment can be Carbo/Taxol. I know others who finished with that instead of Cisplatin.0 -
hearing loss
Talk with your doctors! They know what is best for you!!! I was treated with Cisplatin and 5FU with concurrent radiation for esophageal cancer. After two rounds of being very ill and ringing with hearing loss, my oncologist suspended my two final rounds of Cisplatin and went solely with 5FU. She felt that she had maxed the Cisplatin and that I had exceeded my dosage. I begged for more Cisplatin and argued that I would rather be alive and deaf. Three years later I still have persistant ringing at different frequencies, can't hear squat with background noise, have enormous difficulty hearing some of my students (I teach) but I am here to drive my husband and kids crazy with the "Huhs? What did you say? Can you repeat that?"
Hang in there and stay positive!
Best wishes to you!0 -
FWIWllamp0922 said:hearing loss
Talk with your doctors! They know what is best for you!!! I was treated with Cisplatin and 5FU with concurrent radiation for esophageal cancer. After two rounds of being very ill and ringing with hearing loss, my oncologist suspended my two final rounds of Cisplatin and went solely with 5FU. She felt that she had maxed the Cisplatin and that I had exceeded my dosage. I begged for more Cisplatin and argued that I would rather be alive and deaf. Three years later I still have persistant ringing at different frequencies, can't hear squat with background noise, have enormous difficulty hearing some of my students (I teach) but I am here to drive my husband and kids crazy with the "Huhs? What did you say? Can you repeat that?"
Hang in there and stay positive!
Best wishes to you!
I had three rounds of Cisplatin. The chemo doc (Chemical Alice) had told me that if I did the Cisplatin my survival chances would increase by 20 percent. I did the Cisplatin.
When I noticed a ringing in my ears I told the doc, who immediately sent me to an audiologist who documented high-frequency hearing loss in both ears, much worse in one ear than the other. However, I have been exposed to a lot of gunfire throughout my life, along with a whole lot of extremely loud rock 'n' roll -- if you ever attended a concert by The Who back in the '60s and '70s, you know what I mean. The audiologist said she couldn't say which had done the most damage, but that it probably was a combination of the three
So, I completed my Cisplatin treatment. That was two years ago. My hearing didn't get any worse and the ringing in my ears is pretty much gone.
That's my experience, anyway. As always, your mileage may vary ...
--Jim in Delaware0 -
HEARING LOSS
Suzanne, I am just 2 weeks post and I too was worried about the hearing. My Doc's never said anything about it, so I learned it on this site. I have ringing in my ears, but do not feel I have lost any of my hearing. My right ear canal seems a lillt plugged up or there mey still be some swelling from my Surgery. I went ahead with all 3 treatments as I was told that Cisplatin is the preferred Chemo to treat this typ of cancer. I was willing to forgo some hearing to increase my chances of being NED in the future.
Hope this helps
BEST
Mike0 -
thanks!luv4lacrosse said:HEARING LOSS
Suzanne, I am just 2 weeks post and I too was worried about the hearing. My Doc's never said anything about it, so I learned it on this site. I have ringing in my ears, but do not feel I have lost any of my hearing. My right ear canal seems a lillt plugged up or there mey still be some swelling from my Surgery. I went ahead with all 3 treatments as I was told that Cisplatin is the preferred Chemo to treat this typ of cancer. I was willing to forgo some hearing to increase my chances of being NED in the future.
Hope this helps
BEST
Mike
Once again, responses here are overwhelmingly helpful! In this case it's because it was interesting the varied responses, which helps to make a better, more informed decision. I will go over with Joe all of the responses and of course he is the one who has to decide and live with the decision (it doesn't help that my son and I happen to have very high pitched voices).
Also, maybe partly he is so overwehlmed by all of the other side affects from the radiation, that he just isn't thinking clearly that the possibility of having permanent hearing loss is not that bad (since hearing aids can solve the problem if needed) and shouldn't be a factor when it is weighed against bettter chances of NED.
I'll post next week what was the outcome.
thanks again everyon!
Suzanne0 -
Cisplatin - Carboplatinsusan0803 said:thanks!
Once again, responses here are overwhelmingly helpful! In this case it's because it was interesting the varied responses, which helps to make a better, more informed decision. I will go over with Joe all of the responses and of course he is the one who has to decide and live with the decision (it doesn't help that my son and I happen to have very high pitched voices).
Also, maybe partly he is so overwehlmed by all of the other side affects from the radiation, that he just isn't thinking clearly that the possibility of having permanent hearing loss is not that bad (since hearing aids can solve the problem if needed) and shouldn't be a factor when it is weighed against bettter chances of NED.
I'll post next week what was the outcome.
thanks again everyon!
Suzanne
I'm not sure of the differences really, although, I believe that Carboplatin is a lesser derivative of Cisplatin.
I actually have had both, during the bigger three chemo cycles I had Cisplatin each time. Then during the concurrent seven week period, I had Carboplatin each of those seven weeks.
For me (and as you know we are all different), I haven't had any noticeable difference in hearing or tinnitus (which I had a little going in already).
I would also definitely take hearing loss over loss of life.
Best,
John0 -
Hearing lossSkiffin16 said:Cisplatin - Carboplatin
I'm not sure of the differences really, although, I believe that Carboplatin is a lesser derivative of Cisplatin.
I actually have had both, during the bigger three chemo cycles I had Cisplatin each time. Then during the concurrent seven week period, I had Carboplatin each of those seven weeks.
For me (and as you know we are all different), I haven't had any noticeable difference in hearing or tinnitus (which I had a little going in already).
I would also definitely take hearing loss over loss of life.
Best,
John
I'm a 6 year plus survivor of small cell lung cancer that, had to be treated aggressively. I did 4 rounds or cycles of cisplatin and etoposide in combination with radiation twice a day for thirty treatments to my chest I then did 15 PCI treatments to the brain.
I have significant hearing loss from the cisplatin I had always hoped that my hearing would get better as time passed but it has not.
I also chose hearing loss over loss of life ...0 -
I had 3 rounds of Cisplatin and 3 rounds of Carboplatin. Ringing in the ears is still present but your mind does a great job of fading it into the background over time. Mine got pretty loud after dose 3 so I said uncle and they switched me to the Carbo. I'm really glad I did because I'm now at 7 months and so far, so good. Carboplatin for your last dose will be a walk in the park compared to Cisplatin. You'll be fine, be positive, thank your higher beings that are looking out for you during this trying time and ask them to protect your good cells and only destroy the bad cells during radiation. Then change your life for the better after your treatment, take up meditation, eat a ketogenic diet, take all sugars out of your daily diet (read labels and learn) as this feeds the cancer bloom that is crushing the American populace. Become a more loving empathetic person if this was an issue for you like it was mine. Life will be great moving forward.
0
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