Jocks wife

Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!

i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!

i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available. 

Thankyou, and my best wishes.

kind regards

Steph

Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!

i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!

i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available. 

Thankyou, and my best wishes.

kind regards

Steph

Hi, thanks for taking the time to reply. I have just been in to see my oncologist and signed on the dotted line. Just as you suggested I have asked him to put a surgery plan B in place. He has said he will alert my two previous surgeons so we can go straight into surgery if the need arises(very glad I dropped some Xmas treats to these guys, hopefully they will feel obliged to keep me alive)!

i feel extremely fortunate to have got a place as it opened here on Xmas eve and there is only one spot now available, just too much melanoma!

i hope you re enjoying your NED label, it is so easy to fret about what is coming next and not enjoy the moment, it seems now though when the moment is over there are new and better options available. 

Thankyou, and my best wishes.

kind regards

Steph

Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner. 

My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!

Hope your NED status continues, bask in it!

Steph

Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner. 

My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!

Hope your NED status continues, bask in it!

Steph

Thanks Kevin, I completely agree with you, but unfortunately in New Zealand we have only very occasional access to these drug trials. They approved drugs (ipi) are also prohibitively expensive ($100s of thousands per treatment), so I am feeling very backed in a corner. 

My plan was to continue having tumours resected if and when they popped up, and I could do that, but my oncologist thinks this trial looks too promising to miss out on. We were only allocated 4 spaces and 2 of them have been filled….nothing like a bit of pressure!

Hope your NED status continues, bask in it!

Steph

Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.

Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!

Steph

Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.

Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!

Steph

Thanks for your reply, it really helps to talk to others in the same boat. Yes, i think you are right, this disease seems to come back when you are least expecting it, after 3 years NED I had gotten a bit smug, starting to think a bit too far ahead.

Think I will have to go with this trial in the hope of a durable response, actually I would even take semi durable at the moment!

Steph

Hi Artie

Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!

Steph

Hi Artie

Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!

Steph

Hi Artie

Thanks for taking the time to reply, yes this is the ipi keytruda combo, my Oncologist thinks we can manage side effects ok, with steroids if needed. As the combo is only for 12 weeks then up to 2 years on just Keytruda. Unfortunately I don't have any other drug options available here, so really feeling the pressure to go with this. Although ipi is approved in New Zealand it is not funded, my onc tells me we would be looking at over $100 000 per treatment, and he thinks new anti PD1 drugs could be double that when approved, it makes it hard to say no to this trial!

Steph