Tinnitus after Carboplatin

knightrider said:

Just wondered if anyone else missed the 2nd dose

Hi. Don’t stress. Lots of people miss that second dose. 
I know Hazel missed one out of three. Percentage wise it makes very little difference whereas tinnitus is a major side effect to put up with. 

Hi knightrider (42c27539575e4001af81ae1bb3c70f14) like Dani says my  third chemo was cancelled I was due to have three doses after the second one I had I was complete response as far as the lymph nodes concerned. I had responded wealth to the chemo had a very slight wishing sound in one ear and we jointly made the decision with their oncologist not to take the third chemo. My hearing is perfectly normal now 

Don’t stress about the chemo it’s not the major factor that’s radiotherapy. 
hugs Hazel 

Sorry

about the block writing sm out on my bike and no reading glasses on. 

I had carboplatin.  It is not the normal chemo, but I did not want the potential of tinnitus so I insisted.  I do have tinnitus but it is a pulsating rather than ringing one.  Probably caused by the RT rather than chemo.  I've had CT head to look into any damage but thankfully nothing is obviously damaged.  The tinnitus is annoying rather than debilitating.

In the end I was due to have 6 sessions of carboplatin but the last was cancelled at the tumour had responded well prior to that final dose and they thought it not essential.  2 years down the road and I am fine with no sign of the treatment being any less effective as a result.

Thanks Dani. Yeah the percentage it adds does seem to be pretty low, although my oncologist wasn't able to quantify it for me precisely.

I think my worry is that i'm not doing 'everything' I can to kick the cancer - and on one hand that feels irresponsible.  But on the other hand I feel that my body is giving me a clear signal that it is sensitive to the Carboplatin (which is supposed to be the less ototoxic platinum option) and i'm therefore very concerned any further dosing will make things worse, or possibly permanent.  There do seem to be lots of folks with tinnitus that fades away a few months after treatment - but I think that are an equal number when it's become permanent.  As you say, the tinnitus is very difficult to deal with, and it feels like a real dice roll. 

Thanks Hazel, sounds like you made the right decision and i'm super happy for you that the wooshing sound in your ear cleared up.  The constant sound can be quite debilitating over time.  How long did that take to go?

I think in my case my oncologist would prefer I completed the 2nd dose - but he's ok with me reducing or not doing it because of my good response to the treatment so far and because of my concerns. I think that's part of why i'm worried, because the de-escalation feels like it's coming more from me.

Thanks Peter - yeah you did the right thing taking the carbo.  The usual cisplatin chemo is highly ototoixic with maybe double the chance to affect hearing from what i've read.  Carbo was positioned for me as very low risk from a hearing/tinnitus perspective, so I'm super disappointed that I've had this reaction to it.  I guess if you had 5 out of 6 doses you must have been around the 80% of complete treatment mark.  I'd be stopping more at 50%, which feels a chunk lower.  But it's good to know that reduction didn't have any impact on your outcomes.   

Hi Beesuit , do you have a numbers on benefit of chemo on top of RT in terms of OS or recurrence rates? 

knightrider said:

Hi Beesuit , do you have a numbers on benefit of chemo on top of RT in terms of OS or recurrence rates? 

My oncologist quoted just over 6% to five years 

I didn’t have any and I’m still here seven years later. ( No nodal spread on MRI though)

There is no enhanced effect of chemotherapy on distant metastasis 

Is that because  you elected not to have it, or was it not standard of care for you because you were lower risk?

With no nodal spread that made me lower risk. 
I’ve just asked one of my team about chemotherapy and recurrence. If chemotherapy is prescribed refusal is associated with  higher than 50% chance of early recurrence. 
That’s not the same as there being a scenario when chemotherapy is a choice and the decision is left up to the patient.