First Ipi infusion scheduled

Chris,

As far as your treatment plan, I can't offer any better advice, because I think you have a smart, solid plan in place.  You've thought it through, worked with your onc closely to understand the plan and the goals, and it's time now to boldly move forward with the plan.

With ipi, the experience can vary so much, but remember that the majority of patients will not experience any severe side effects.  You'll read this everywhere on this site and elsewhere, but I'll repeat it here:  the most important thing is to report anything out of the ordinary to your doctor as soon as possible.  Many side effects can be managed and the sooner they know about them, the more effective that management can be.  You have the goal to get all four of your infusions and you also want to feel as good as you can going through this.  Don't let the fear of having a dose delayed or stopped altogether prevent you from reporting something to your doctor right away.

Certainly let us know how it goes with every dose or more often if you like, I know everyone would love to hear how you're doing.  And if you do encounter any side effects, you'll get plenty of advice from others who may have experienced them — but tell us after you tell your doctors!  😉

Wishing you all the best, Joe

Chris,

As far as your treatment plan, I can't offer any better advice, because I think you have a smart, solid plan in place.  You've thought it through, worked with your onc closely to understand the plan and the goals, and it's time now to boldly move forward with the plan.

With ipi, the experience can vary so much, but remember that the majority of patients will not experience any severe side effects.  You'll read this everywhere on this site and elsewhere, but I'll repeat it here:  the most important thing is to report anything out of the ordinary to your doctor as soon as possible.  Many side effects can be managed and the sooner they know about them, the more effective that management can be.  You have the goal to get all four of your infusions and you also want to feel as good as you can going through this.  Don't let the fear of having a dose delayed or stopped altogether prevent you from reporting something to your doctor right away.

Certainly let us know how it goes with every dose or more often if you like, I know everyone would love to hear how you're doing.  And if you do encounter any side effects, you'll get plenty of advice from others who may have experienced them — but tell us after you tell your doctors!  😉

Wishing you all the best, Joe

Chris,

As far as your treatment plan, I can't offer any better advice, because I think you have a smart, solid plan in place.  You've thought it through, worked with your onc closely to understand the plan and the goals, and it's time now to boldly move forward with the plan.

With ipi, the experience can vary so much, but remember that the majority of patients will not experience any severe side effects.  You'll read this everywhere on this site and elsewhere, but I'll repeat it here:  the most important thing is to report anything out of the ordinary to your doctor as soon as possible.  Many side effects can be managed and the sooner they know about them, the more effective that management can be.  You have the goal to get all four of your infusions and you also want to feel as good as you can going through this.  Don't let the fear of having a dose delayed or stopped altogether prevent you from reporting something to your doctor right away.

Certainly let us know how it goes with every dose or more often if you like, I know everyone would love to hear how you're doing.  And if you do encounter any side effects, you'll get plenty of advice from others who may have experienced them — but tell us after you tell your doctors!  😉

Wishing you all the best, Joe

Hi Chris,

Im absolutely agree with Joe. Please let us know your process, some of us are following the same path as you.

Good luck

Juan

Hi Chris,

Im absolutely agree with Joe. Please let us know your process, some of us are following the same path as you.

Good luck

Juan

Hi Chris,

Im absolutely agree with Joe. Please let us know your process, some of us are following the same path as you.

Good luck

Juan

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

Chris,

With the differences in health systems I just don't know of anything else to suggest.  Have you tried sending Catherine Poole an email to see if she has a suggestion?

I know your situation seems really bleak right now but remember often the darkest hour is just before dawn.  Get ready for Ipi and just keep remembering there are patients who have had remarkable results with it.  You can be one of those patients. 

I can promise you will be in my thoughts and prayers over the next few weeks.  If you don't mind I would like you to message me your mailing address at some point because I fully intend to send you a birthday card on Nov 4th!

Brian

Chris,

With the differences in health systems I just don't know of anything else to suggest.  Have you tried sending Catherine Poole an email to see if she has a suggestion?

I know your situation seems really bleak right now but remember often the darkest hour is just before dawn.  Get ready for Ipi and just keep remembering there are patients who have had remarkable results with it.  You can be one of those patients. 

I can promise you will be in my thoughts and prayers over the next few weeks.  If you don't mind I would like you to message me your mailing address at some point because I fully intend to send you a birthday card on Nov 4th!

Brian

Chris,

With the differences in health systems I just don't know of anything else to suggest.  Have you tried sending Catherine Poole an email to see if she has a suggestion?

I know your situation seems really bleak right now but remember often the darkest hour is just before dawn.  Get ready for Ipi and just keep remembering there are patients who have had remarkable results with it.  You can be one of those patients. 

I can promise you will be in my thoughts and prayers over the next few weeks.  If you don't mind I would like you to message me your mailing address at some point because I fully intend to send you a birthday card on Nov 4th!

Brian

Chris, any thoughts on pushing your onc on the intial 2 week washout in light of your tumor burden?  Consider asking him/her to contact one of the trial investigators for the ipi/GSK combo.  I know that Jedd Wolchuk at Sloan is one of them.  I think there is another one in St. Louis.

Chris, any thoughts on pushing your onc on the intial 2 week washout in light of your tumor burden?  Consider asking him/her to contact one of the trial investigators for the ipi/GSK combo.  I know that Jedd Wolchuk at Sloan is one of them.  I think there is another one in St. Louis.

Chris, any thoughts on pushing your onc on the intial 2 week washout in light of your tumor burden?  Consider asking him/her to contact one of the trial investigators for the ipi/GSK combo.  I know that Jedd Wolchuk at Sloan is one of them.  I think there is another one in St. Louis.

That is a solid plan. You have a really good doctor. I would not change a thing. I especially like the part of continuing the Taf 3 days after each infusion again and stopping 5 days before each infusion. I see that as the key you are going to make it.

The day you are getting your first ipi on August 13th is the day I get my first PD1 EAP scan after 4 doses of it.

Good luck to you Chris.

That is a solid plan. You have a really good doctor. I would not change a thing. I especially like the part of continuing the Taf 3 days after each infusion again and stopping 5 days before each infusion. I see that as the key you are going to make it.

The day you are getting your first ipi on August 13th is the day I get my first PD1 EAP scan after 4 doses of it.

Good luck to you Chris.

That is a solid plan. You have a really good doctor. I would not change a thing. I especially like the part of continuing the Taf 3 days after each infusion again and stopping 5 days before each infusion. I see that as the key you are going to make it.

The day you are getting your first ipi on August 13th is the day I get my first PD1 EAP scan after 4 doses of it.

Good luck to you Chris.

Good luck Chris, i am having my fourth and last infusion on Aug 13..I have had no side effects except maybe a little fatigue in the morning every now and then..Always think positive and never give up..I believe a positive attitude is up most important in fight this..Sounds like you and your Dr have a plan and i pray you don't have a tough time going through Yervoy..Drink lot's and lot's of water..I also drank V-8 juice to get my veggie intake a day and would drink at least one nutritional drink a day..Am also taking a multi vit and a vit D3 tablet a day..

Good luck Chris, i am having my fourth and last infusion on Aug 13..I have had no side effects except maybe a little fatigue in the morning every now and then..Always think positive and never give up..I believe a positive attitude is up most important in fight this..Sounds like you and your Dr have a plan and i pray you don't have a tough time going through Yervoy..Drink lot's and lot's of water..I also drank V-8 juice to get my veggie intake a day and would drink at least one nutritional drink a day..Am also taking a multi vit and a vit D3 tablet a day..

Good luck Chris, i am having my fourth and last infusion on Aug 13..I have had no side effects except maybe a little fatigue in the morning every now and then..Always think positive and never give up..I believe a positive attitude is up most important in fight this..Sounds like you and your Dr have a plan and i pray you don't have a tough time going through Yervoy..Drink lot's and lot's of water..I also drank V-8 juice to get my veggie intake a day and would drink at least one nutritional drink a day..Am also taking a multi vit and a vit D3 tablet a day..

Best of luck to you. I was tired with Ipi and had boarderline colitis, but these were managed well with over the counter meds and a good diet (no spicy foods, etc). I did have a prescription for nausea later as I got towards the last dose or so. Everyone is different, but my guess is that you won't really have any side effects for at least a few days after the first dose and as you get more doses you may notice more/worse side effects quicker or they don't go away as quickly after the later doses. For me it was a bit cumulative. Make sure you're taking in enough energy to keep your body working properly- especially protein. You need the energy/nutrients for your immune system to work properly and to feel physically well. 

I sincerely hope you respond fully to the Ipi and achieve that coveted NED status with it!

Keep us posted

Best of luck to you. I was tired with Ipi and had boarderline colitis, but these were managed well with over the counter meds and a good diet (no spicy foods, etc). I did have a prescription for nausea later as I got towards the last dose or so. Everyone is different, but my guess is that you won't really have any side effects for at least a few days after the first dose and as you get more doses you may notice more/worse side effects quicker or they don't go away as quickly after the later doses. For me it was a bit cumulative. Make sure you're taking in enough energy to keep your body working properly- especially protein. You need the energy/nutrients for your immune system to work properly and to feel physically well. 

I sincerely hope you respond fully to the Ipi and achieve that coveted NED status with it!

Keep us posted

Best of luck to you. I was tired with Ipi and had boarderline colitis, but these were managed well with over the counter meds and a good diet (no spicy foods, etc). I did have a prescription for nausea later as I got towards the last dose or so. Everyone is different, but my guess is that you won't really have any side effects for at least a few days after the first dose and as you get more doses you may notice more/worse side effects quicker or they don't go away as quickly after the later doses. For me it was a bit cumulative. Make sure you're taking in enough energy to keep your body working properly- especially protein. You need the energy/nutrients for your immune system to work properly and to feel physically well. 

I sincerely hope you respond fully to the Ipi and achieve that coveted NED status with it!

Keep us posted