Tinnitus from chemo treatment

Yes. So much is left unsaid. 

My medical team took it very seriously as soon as I reported first sign of tinnitus on week 1. They were very concerned hence deciding to stop the chemo rather than risk loss of hearing.  I hadn't realised that about cisplatin... 

• I think it was Carboplatin (?). It was platinum-based. Just a reduced risk of tinnitus. Not completely reduced.

Liesle R said:

My medical team took it very seriously as soon as I reported first sign of tinnitus on week 1. They were very concerned hence deciding to stop the chemo rather than risk loss of hearing.  I hadn't realised that about cisplatin...

Hi Liesle R 

Yes, as mentioned, Carboplatin is the alternative. It's still a platinum drug and still toxic but not as much as cisplatin. The effects will be in all our consent forms but you know how it is about these forms...we tend to not see a lot of the info. And I agree, better to stop the treatment that adds only a few percent to chance of cure than be permanently hearing impaired 

I hope you are OK n ow?

I have tinnitus which is mildly annoying only sometimes. I have got used to it. I have lost the high end frequencies in one ear and that's due to the RT. I have a copy of my treatment plan and I can see the area has hit my cochlea so it's permanent. 

The other thing that RT can do is give you glue ear but that usually sorts itself out

They did tell me that tinnitus is a common side effect at the outset when I did the forms but I didn’t read the fine detail. So much to take in at that point. My hearing was really affected by Week 2 of chemo but it eased once treatment stopped. I do still have ringing but it’s a small price to pay. I have had problems with my right ear which is the side that had the most RT but much better now. Learning so much more about our types of cancer and impact of treatment now. At the beginning I didn’t pay too much heed to potential side effects and long term issues as has to focus on getting through the treatment… 

what about sodium thiosulfate (Pedmark).. is that an option... is it available in the UK.. ?

Yes. There is a trial for paediatric patients 

Beau Chapeau said:

what about sodium thiosulfate (Pedmark).. is that an option... is it available in the UK.. ?

www.cancerresearchuk.org/.../a-trial-looking-at-lowering-the-risk-of-hearing-loss-after-cisplatin-chemotherapy-in-children-or-young-people-with-hepatoblastoma

To be honest, when they rang me to say they wanted to give me chemo last Friday I refused to have Cisplatin.  I had previously discussed my concern over the side effects and how glad I was that at that time I was not needing chemo, so they already knew my feelings on this drug; especially the tinnitus.  They have offered an alternative (Carboplatin) which I will take.  When discussing the effectiveness of chemo they stated that Cisplatin enhances cure by around 6% whilst alternatives are marginally less, but in any case they did not know what improvement in chances any chemo would give me in my rather specific case.  I appreciate that chemo for me is belt and braces.

It is always a personal choice, but I would rather not have the possibility of a poor quality of life from hearing damage and take a marginally lesser cure option - we are talking a % point or so.

Hi 51coupe

I had  after second round cisplatin tinnitus on and off and now 5 weeks post treatment partial loss of hearing in left ear .Definetley speak to your team about this there is also a tinnitus.org.uk website might be useful?

All the best

Debbie

Debbielouise said:

cisplatin tinnitus on and off and now 5 weeks post treatment partial loss of hearing in left ear

Cisplatin hearing loss is usually bilateral so likely it’s something else