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Last autumn I was diagnosed with breast cancer and scans also showed a nodule in my lung which turned out to be a tiny SCLC.
I meanwhile had a mastectomy as well as a lobectomy, and both cancers were removed. Lymph nodes clear and margins clean.
I'm now supposed to undergo chemotherapy, followed by possible radiation and by hormone therapy re breast cancer.
I do hesitate to go through all this treatment in principle, feeling my body has recovered well from surgeries, and do I necessarily have to poison it with the drugs proposed?
But one and a half of those drugs worry me, and probably some of you have experiences:
First I need to explain I'm deaf in one ear, and only hear with a hearing aid in the other. Now, Carboplatin especially, (but also Herceptin) can damage hearing. I'm afraid that these drugs could damage the bit of hearing I have left.
Any thoughts, experiences, advice?
Yes, the platinum based drugs can cause tinnitus, which normally goes away, and in some cases can reduce hearing sensitivity of higher frequencies. I think that both are rare as permanent side-effects, but I definitely had tinnitus from Cisplatin (a drug from the same stable as Carboplatin), a ringing in response to loud noises. Thankfully it went away.
Before starting my chemo I had a hearing test (and kidney and lung) to provide a quantitative baseline. If at any point in my treatment, I felt I was having issues with lung function or hearing, then they could re-test me and stop/modify the treatment. I know of others who had BEP chemo, and had some early indications of lung problems, and so they simply re-tested to check and stopped the 'B' part of that cocktail but continued with the 'EP'.
I would discuss a baseline test with your oncologist, and also some method of monitoring your hearing during treatment - and at the first sign of change they can review the treatment.
Thank you , Greg.
I will take on your tip re baseline test. I also thought I should get an audiologist's opinion.
What worries me, however, is I read hearing can deteriorate after treatment.
Plusthe possible reduction of hearing high sounds. These are the ones I still hear best.
Hi Dreierlei. I had Cisplatin 3 years ago and have suffered with tinnitus and reduced high frequency hearing since. I was told at the time it would only be temporary, but no such luck. I was recently referred to ENT, but told there was nothing they could do for me. I agree with Greg, that you need to have your hearing monitored and make sure the medics are made aware of any changes. Best wishes.
Thank you Rily, for telling me.
Do I believe in monitoring?
I'm still very inclined to refuse chemotherapy altogether.
Hi, bit late to this thread but my husband has just had 1 (of 2) carboplatin treatment for testicular ca. In his position many people would have had the BEP that Greg describes but he opted for debunking surgery so that carboplatin could be used instead. If has much lower rates of causing hearing trouble than consolation which was very important to my husband who also has underlying hearing loss.
We have also together talked through (lots) the increased survival benefit (and prevention of more hardcore treatment of recurrence) that the chemo brings. It's not easy to subject yourself to treatment but it was the benefits that swung us.
Debulking not debunking! (Would love it if testicular ca could be debunked...)
Thanks for coming back abn giving the update - that's going to be very useful for others looking for an alternative to BEP, and was something I wasn't really aware of.
Hope you are both doing well,
Thank you, Hartbert, for your input here.
I wish you both all best!
No problem - wish you all the best too on this journey! Greg, I will update on the TC forum so that the information is more accessible about our experience.
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