CaptAaron

Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.

Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out.  I'm also going to look more into the trial that Lynn is in at Moffitt.

Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this.  Blessings!–Aaron

Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.

Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out.  I'm also going to look more into the trial that Lynn is in at Moffitt.

Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this.  Blessings!–Aaron

Thanks Lisa, I'm gonna go back to my CBC results and try to decipher the Absoulete lymphocyte counts as well and ask my doc about the levels relative ot Yervoy performance.

Surgery consultation tomorrow (Monday, 21 Nov) so we'll see what the surgeon says about cutting these boogers out.  I'm also going to look more into the trial that Lynn is in at Moffitt.

Thanks everyone for the replies, keep them coming as y'all know communication is key with figuring anything out with this.  Blessings!–Aaron

Thanks Cristy, we'll see what the surgeon has to say on Monday.  From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them.  I'm not gonna back down though and I'm gonna push for this surgery hard.

The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy.  I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.

I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong. 

Take care Cristy, and I'll keep posting on updates.

Thanks Cristy, we'll see what the surgeon has to say on Monday.  From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them.  I'm not gonna back down though and I'm gonna push for this surgery hard.

The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy.  I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.

I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong. 

Take care Cristy, and I'll keep posting on updates.

Thanks Cristy, we'll see what the surgeon has to say on Monday.  From what I hear he's a really typical jock surgeon and many patients have left his office sobbing from whatever he tells them.  I'm not gonna back down though and I'm gonna push for this surgery hard.

The delayed response from Yervoy sounds promising but my doc said they've only seen it in about 2% of patients that don't have an initial positive response to Yervoy.  I'm not a statistic and neither are you so I'll keep the faith if you will that Yervoy will still work for us.

I notice some symptoms if I go for like a 3 mile run or something and just the mental thought of them being there makes me more "aware" of maybe something going on, but ya, I haven't been coughing or wheezing or anything like that, so it's hard to appreciate there's something wrong. 

Take care Cristy, and I'll keep posting on updates.

Hey Maria,

Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort.  Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone.  Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone.  Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred.  That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.

Surgery consultation next Monday to deterimine what they can do for me there.  But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial.  Hopefully the bout of colitis won't discount me from elligibility as well.

I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities.  I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.

Thanks again for your response and kind words.  Peace and blessings to you in your fight as well.

–Aaron

Hey Maria,

Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort.  Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone.  Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone.  Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred.  That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.

Surgery consultation next Monday to deterimine what they can do for me there.  But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial.  Hopefully the bout of colitis won't discount me from elligibility as well.

I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities.  I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.

Thanks again for your response and kind words.  Peace and blessings to you in your fight as well.

–Aaron

Hey Maria,

Thanks for the reply and yes I was on a different steroid after my second dose of Yervoy and it was called Entocort.  Entocort is good because it just coats the bowels as opposed to performing systemic response like Prednisone.  Unfortunately the colitis set in hard and fast after my third Yervoy treatment and we had to step up to the Prednisone.  Then the dose of Prednisone turned out to not even be enough and I was hospitalized for 4 days while they trippled the dose of Pred.  That worked, and I'm working to taper off now, but its hard not to do it quickly because I know getting off these things will open doors for anti PD-1 trials.

Surgery consultation next Monday to deterimine what they can do for me there.  But I'm hopefuly they can cut it out and then we move on to injecting myself in an anti PD-1 trial.  Hopefully the bout of colitis won't discount me from elligibility as well.

I'm still hopeful that the Yervoy will work despite the mets growing, but with a continued suppressed immune system from the Pred, I'm sure that discounts delayed Yervoy response probabilities.  I'm not a doctor though I'm an engineer, so hopefully we'll figure something out that I'm not thinking of.

Thanks again for your response and kind words.  Peace and blessings to you in your fight as well.

–Aaron

Thanks Lynn, researching anti PD-1 options with my docs now.

Thanks Lynn, researching anti PD-1 options with my docs now.

Thanks Lynn, researching anti PD-1 options with my docs now.