PD1 and work?

Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

Ben.

Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

Ben.

Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

Ben.

Hi Brendan,

My husband Craig has been able to work/complete uni work. But he did also have similiar symptoms to what you are describing early on. I guess being an immune based drug, its going to potentially give you those symptoms. They definitely settled, and now he might feel a little fluey/achey the night of infusion, and have some fatigue, but apart from that he feels ok. I do think its important for him to rest when he feels this way though.

Hopefully you feel a bit better soon, but I definitely dont think its unusual to have those symptoms 

Good luck!

Lisa

Hi Brendan,

My husband Craig has been able to work/complete uni work. But he did also have similiar symptoms to what you are describing early on. I guess being an immune based drug, its going to potentially give you those symptoms. They definitely settled, and now he might feel a little fluey/achey the night of infusion, and have some fatigue, but apart from that he feels ok. I do think its important for him to rest when he feels this way though.

Hopefully you feel a bit better soon, but I definitely dont think its unusual to have those symptoms 

Good luck!

Lisa

Hey Brendon,

I finished 2 1/2 years of anti-PD1 (Nivo) 6 months ago.  I work 12h shifts three days a week and missed only 3 days of work in that entire time.  I certainly had various side effects…fatigue, rashes, wheezing…most commonly….but they rarely stopped me from working or exercising.   Others in my study did have much greater problems with fatigue and some did have to stop working. I have to admit I have been feeling much better since not having to take it!!!  You may just be experiencing a winter bug at the moment and hopeful you will soon be feeling better.  I put a synopsis of side effects both from the literature and my own experience on my blog a bit ago it you are interested.  Hang in there!  Celeste

Hey Brendon,

I finished 2 1/2 years of anti-PD1 (Nivo) 6 months ago.  I work 12h shifts three days a week and missed only 3 days of work in that entire time.  I certainly had various side effects…fatigue, rashes, wheezing…most commonly….but they rarely stopped me from working or exercising.   Others in my study did have much greater problems with fatigue and some did have to stop working. I have to admit I have been feeling much better since not having to take it!!!  You may just be experiencing a winter bug at the moment and hopeful you will soon be feeling better.  I put a synopsis of side effects both from the literature and my own experience on my blog a bit ago it you are interested.  Hang in there!  Celeste

I am curious about why Celeste no longer needs Nivo.  I have been on Lambrolizumab, a different anti PD-1 immunotherapy, for six months and from what I understand I will be on it indefinitely, or until the disease returns.  I haven't found any information about what happens when someone goes off these immunotherapies.  I would appreciate any info you have.

I am curious about why Celeste no longer needs Nivo.  I have been on Lambrolizumab, a different anti PD-1 immunotherapy, for six months and from what I understand I will be on it indefinitely, or until the disease returns.  I haven't found any information about what happens when someone goes off these immunotherapies.  I would appreciate any info you have.

I am curious about why Celeste no longer needs Nivo.  I have been on Lambrolizumab, a different anti PD-1 immunotherapy, for six months and from what I understand I will be on it indefinitely, or until the disease returns.  I haven't found any information about what happens when someone goes off these immunotherapies.  I would appreciate any info you have.

Jaryllane,

You must be in a trial and most of those have an end point so you might want to check the papers you signed and/or talk with your trial physician or coordinator to see what they will be doing and when….but…all trials are different so….  Anyhow, I was in a Phase I trial for the BMS anti-PD1 product, now named Nivolumab, in Tampa at Moffitt.  It was clear what the trial was, how often I would get the med and for how long.  I was in the Stage IV, NED arm, in the first co-hort, given 1mg/kg every 2 weeks for 6 months, then every 3 months for 2 additional years.  Two other co-horts were given 3mg/kg and 10 mg/kg respectively with the same schedule.  The sister arm included Stage IV patients with evidence of disease and were placed in the same three groups.  SO….when we are done…we are done. (Moffitt has since add many additional arms, for patients who have had ipi, had a bad time on ipi…all sorts of things.)   Scans and MRI were required every three months and signs of progression meant the end of your time on the trial.  Many folks that were in the later cohorts are still in progress, but since I (and other peeps) were in the first co-hort…we have completed the medication portion and are being followed every 6 months now but with no meds.  Researchers are having a hard time finding an end point in these trials with immunotherapies, because disease progression and durability of remission and stability are hard to measure by conventional measures utilized in evaluating more conventional chemotherapy.  So….perhaps your situation is open-ended.  However, when my doc…Weber…looked at getting more med for those in my trial who wanted to continue it, instead of end as planned….BMS said "NO!!!"  I am not aware of any trials of the Merck product that are open-ended, but I am certainly not up on every trial they have ongoing.  Most of the ones I am aware of are dosing patients every 2 weeks for 2 years.  Anyhow, I remain NED thus far and the entire story of my trial, its ongoing results, and other melanoma info are on my blog, if you are interested.

Wishing you the best, Celeste

Jaryllane,

You must be in a trial and most of those have an end point so you might want to check the papers you signed and/or talk with your trial physician or coordinator to see what they will be doing and when….but…all trials are different so….  Anyhow, I was in a Phase I trial for the BMS anti-PD1 product, now named Nivolumab, in Tampa at Moffitt.  It was clear what the trial was, how often I would get the med and for how long.  I was in the Stage IV, NED arm, in the first co-hort, given 1mg/kg every 2 weeks for 6 months, then every 3 months for 2 additional years.  Two other co-horts were given 3mg/kg and 10 mg/kg respectively with the same schedule.  The sister arm included Stage IV patients with evidence of disease and were placed in the same three groups.  SO….when we are done…we are done. (Moffitt has since add many additional arms, for patients who have had ipi, had a bad time on ipi…all sorts of things.)   Scans and MRI were required every three months and signs of progression meant the end of your time on the trial.  Many folks that were in the later cohorts are still in progress, but since I (and other peeps) were in the first co-hort…we have completed the medication portion and are being followed every 6 months now but with no meds.  Researchers are having a hard time finding an end point in these trials with immunotherapies, because disease progression and durability of remission and stability are hard to measure by conventional measures utilized in evaluating more conventional chemotherapy.  So….perhaps your situation is open-ended.  However, when my doc…Weber…looked at getting more med for those in my trial who wanted to continue it, instead of end as planned….BMS said "NO!!!"  I am not aware of any trials of the Merck product that are open-ended, but I am certainly not up on every trial they have ongoing.  Most of the ones I am aware of are dosing patients every 2 weeks for 2 years.  Anyhow, I remain NED thus far and the entire story of my trial, its ongoing results, and other melanoma info are on my blog, if you are interested.

Wishing you the best, Celeste

Jaryllane,

You must be in a trial and most of those have an end point so you might want to check the papers you signed and/or talk with your trial physician or coordinator to see what they will be doing and when….but…all trials are different so….  Anyhow, I was in a Phase I trial for the BMS anti-PD1 product, now named Nivolumab, in Tampa at Moffitt.  It was clear what the trial was, how often I would get the med and for how long.  I was in the Stage IV, NED arm, in the first co-hort, given 1mg/kg every 2 weeks for 6 months, then every 3 months for 2 additional years.  Two other co-horts were given 3mg/kg and 10 mg/kg respectively with the same schedule.  The sister arm included Stage IV patients with evidence of disease and were placed in the same three groups.  SO….when we are done…we are done. (Moffitt has since add many additional arms, for patients who have had ipi, had a bad time on ipi…all sorts of things.)   Scans and MRI were required every three months and signs of progression meant the end of your time on the trial.  Many folks that were in the later cohorts are still in progress, but since I (and other peeps) were in the first co-hort…we have completed the medication portion and are being followed every 6 months now but with no meds.  Researchers are having a hard time finding an end point in these trials with immunotherapies, because disease progression and durability of remission and stability are hard to measure by conventional measures utilized in evaluating more conventional chemotherapy.  So….perhaps your situation is open-ended.  However, when my doc…Weber…looked at getting more med for those in my trial who wanted to continue it, instead of end as planned….BMS said "NO!!!"  I am not aware of any trials of the Merck product that are open-ended, but I am certainly not up on every trial they have ongoing.  Most of the ones I am aware of are dosing patients every 2 weeks for 2 years.  Anyhow, I remain NED thus far and the entire story of my trial, its ongoing results, and other melanoma info are on my blog, if you are interested.

Wishing you the best, Celeste

Hey Brendon,

I finished 2 1/2 years of anti-PD1 (Nivo) 6 months ago.  I work 12h shifts three days a week and missed only 3 days of work in that entire time.  I certainly had various side effects…fatigue, rashes, wheezing…most commonly….but they rarely stopped me from working or exercising.   Others in my study did have much greater problems with fatigue and some did have to stop working. I have to admit I have been feeling much better since not having to take it!!!  You may just be experiencing a winter bug at the moment and hopeful you will soon be feeling better.  I put a synopsis of side effects both from the literature and my own experience on my blog a bit ago it you are interested.  Hang in there!  Celeste

Hi Brendan,

My husband Craig has been able to work/complete uni work. But he did also have similiar symptoms to what you are describing early on. I guess being an immune based drug, its going to potentially give you those symptoms. They definitely settled, and now he might feel a little fluey/achey the night of infusion, and have some fatigue, but apart from that he feels ok. I do think its important for him to rest when he feels this way though.

Hopefully you feel a bit better soon, but I definitely dont think its unusual to have those symptoms 

Good luck!

Lisa

I understand!!!  I live in Chattanooga, but would drive two hours to Atlanta, for a flight to Tampa/Moffit on Thursdays.  Then, it was bright and early on Friday at Moffitt for labs, check, and infusion then back on a plane to Atlanta, and the drive home!  Hang in there!  I know you got this!!!!!  C

I understand!!!  I live in Chattanooga, but would drive two hours to Atlanta, for a flight to Tampa/Moffit on Thursdays.  Then, it was bright and early on Friday at Moffitt for labs, check, and infusion then back on a plane to Atlanta, and the drive home!  Hang in there!  I know you got this!!!!!  C

I understand!!!  I live in Chattanooga, but would drive two hours to Atlanta, for a flight to Tampa/Moffit on Thursdays.  Then, it was bright and early on Friday at Moffitt for labs, check, and infusion then back on a plane to Atlanta, and the drive home!  Hang in there!  I know you got this!!!!!  C