Surveillance or Adjuvant Carboplatin (with possible nerve damage)

[Telford82]

All,

I had my appointment at the QE in Birmingham UK today and as mine was a stage 1 seminoma I was offered the following

Surveillance - 15-20% relapse
Adjuvant Carboplatin - 3-4% relapse

and in both cases 3 x BEP if it relapses (or maybe radiotherapy)

I've got the added complication that I suffer from a form of peripheral neuropathy, and Carboplatin and Cisplatin are both on the neurotoxic list of drugs that should be avoided if possible.

I'm not too fussed about the other Chemo side effects, they're short term and some can be managed with medication and I lost my hair years ago, I am however worried about permanent nerve damage. The internet has documented cases of people receiving platinum based chemo and unable to walk etc. In most the cases I've found, the nerve condition was found when investigating the nerve damage so I'm struggling to find any positive outcome cases

Does anyone on here suffer from neuropathy or had any nerve damage from the chemo?

Thanks

[Davepet]

Does anyone on here suffer from neuropathy or had any nerve damage from the chemo?

I have neuropathy in my fingertips. Nothing serious, but it's there, seems to be worse some times, not so noticeable other times. It is frustrating when it's bad & I can;t feel enough to grab the tab on my fly, or get a small nut started on a bolt, but it's not the end of the world.

Dave

[Telford82]

I decided to go with surveillance in the end.

The risk of permanent neuropathy in my case is too high, a couple of years ago I damaged a nerve in my leg and had to walk with a brace for a year, and I can’t move 2 fingers.

After speaking to my oncologist, radiotherapy may be an option if it comes back, and if not then maybe surgery.

I guess if I know it’s back, and radiotherapy or or surgery aren’t possible then I’ll have to take the chemo and live with the consequences.