Lisa – Aust

Hi Ed

Thanks for your reply. 

Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

Good luck for the duration of your treatment – what a fab drug!

Thanks 

Lisa 

Hi Ed

Thanks for your reply. 

Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

Good luck for the duration of your treatment – what a fab drug!

Thanks 

Lisa 

Hi Ed

Thanks for your reply. 

Maybe we should have read more about the side effects when signing those forms! He is on the Merck trial (well, just stopped and doing wait and see). He would have been due to finish late this year, so all up did around 18 months on the drug.

its just strange as these symptoms developed a couple of months after stopping the drug (the tingling, that is. The tinnitus started about mid way through treatment).

Its reassuring that the tingling can be explained by the drug. The Drs in ED the other night thought maybe it was a withdrawal type symptom. Will see what his Prof says this week. 

Good luck for the duration of your treatment – what a fab drug!

Thanks 

Lisa 

Hi Kare

Thanks for your reply.

How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

Thanks again

Lisa 

Hi Kare

Thanks for your reply.

How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

Thanks again

Lisa 

Hi Kare

Thanks for your reply.

How interesting about your husband. No one has suggested that yet (the adrenal insufficiency), but I might look into it/ask questions when we next see the onc.

i have heard of tinnitus being a side effect of ipi, but not so much on the pd1 drugs. It's not fun.  

Thanks again

Lisa 

Hi Anne Louise

thanks for your reply. We are in Perth 

Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

I hope that you are doing well otherwise and that the weaning goes ok.

thanks again

lisa

Hi Anne Louise

thanks for your reply. We are in Perth 

Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

I hope that you are doing well otherwise and that the weaning goes ok.

thanks again

lisa

Hi Anne Louise

thanks for your reply. We are in Perth 

Wow your experience doesn't sound like much fun! My husband Craig has been lucky in that he had no real side effects while on treatment. He went to ED the other night and they suggested that the tingling is likely a result of stopping treatment, so will check in with his onc this week. His tinnitus started while on treatment, but hasn't really changed since stopping. He is on low dose endep for it. 

I hope that you are doing well otherwise and that the weaning goes ok.

thanks again

lisa

Hi there

He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

Thanks for your reply, the tinnitus is not enjoyable!! 

Lisa 🙂

Hi there

He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

Thanks for your reply, the tinnitus is not enjoyable!! 

Lisa 🙂

Hi there

He has seen a fair few specialists now about the tinnitus, and it's seems there are a few things contributing. He had a neck dissection (altered anatomy), radiation to that side of head/neck and is pretty anxious. His hearing is fine, so it does make sense that all these things in combo, including treatment in my opinion, are having an effect. (Drs aren't as convinced!) 

Thanks for your reply, the tinnitus is not enjoyable!! 

Lisa 🙂