Scottw

Hi Christine,

Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

Hi Christine,

Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

Hi Christine,

Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

Hi Steve,

Your Onc. sounds fairly cautious going forward (Maybe for good reason) with your treatment. I did the Ipi-Nivo combo and going into the 2nd infusion had some of what you describe. Going into the 3rd the diahrea, nausia and fevers got progressively worse. Perscription meds for all the above and I was going in for fluids on a regular basis for hydration and hits of Dexamethasone for added relief of diarhea and nausia. Prior the the 4th there was discussion of delay but I wanted to get is done per protocol and he let that happen. Each infusion got progressively worse and the 4th did not dissapoint. My subsequent Nivo alone treatments (every other week starting 2 weeks after the combo) were delayed 4 or 6 weeks due to the rath of my 4th infusion of Ipi-Nivo. It looks like Ipi was definitley the culprit of the bad side effects. Still weaning down off of, at one point was 120 mg. prednisone now down to 10 and going in for my 2nd dose of Nivo next Monday.

Hope is settles for you and let us know how it goes.

Good luck.

Scott

Hi Steve,

Your Onc. sounds fairly cautious going forward (Maybe for good reason) with your treatment. I did the Ipi-Nivo combo and going into the 2nd infusion had some of what you describe. Going into the 3rd the diahrea, nausia and fevers got progressively worse. Perscription meds for all the above and I was going in for fluids on a regular basis for hydration and hits of Dexamethasone for added relief of diarhea and nausia. Prior the the 4th there was discussion of delay but I wanted to get is done per protocol and he let that happen. Each infusion got progressively worse and the 4th did not dissapoint. My subsequent Nivo alone treatments (every other week starting 2 weeks after the combo) were delayed 4 or 6 weeks due to the rath of my 4th infusion of Ipi-Nivo. It looks like Ipi was definitley the culprit of the bad side effects. Still weaning down off of, at one point was 120 mg. prednisone now down to 10 and going in for my 2nd dose of Nivo next Monday.

Hope is settles for you and let us know how it goes.

Good luck.

Scott

Hi Steve,

Your Onc. sounds fairly cautious going forward (Maybe for good reason) with your treatment. I did the Ipi-Nivo combo and going into the 2nd infusion had some of what you describe. Going into the 3rd the diahrea, nausia and fevers got progressively worse. Perscription meds for all the above and I was going in for fluids on a regular basis for hydration and hits of Dexamethasone for added relief of diarhea and nausia. Prior the the 4th there was discussion of delay but I wanted to get is done per protocol and he let that happen. Each infusion got progressively worse and the 4th did not dissapoint. My subsequent Nivo alone treatments (every other week starting 2 weeks after the combo) were delayed 4 or 6 weeks due to the rath of my 4th infusion of Ipi-Nivo. It looks like Ipi was definitley the culprit of the bad side effects. Still weaning down off of, at one point was 120 mg. prednisone now down to 10 and going in for my 2nd dose of Nivo next Monday.

Hope is settles for you and let us know how it goes.

Good luck.

Scott

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?

Hi Rhodri,

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!

Sorry, tried to make it short.

Good luck and stay posted.

Hi Rhodri,

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!

Sorry, tried to make it short.

Good luck and stay posted.

Hi Rhodri,

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

Not to spook you for my side effects were more severe than what my onc. has seen before and what I have read for the broader people doing the same thing. Some have next to none!

Sorry, tried to make it short.

Good luck and stay posted.

Hey Mat,

Hope your having luck with all this. Thanks for the advise regarding getting back on the solo Nivo. The doc is trying to get me to 1.5 mg dex. (approx 10 mg prednisone) just prior to Nivo next Tues. He really thinks the bulk of the side effects were the Ipi with what has been seen with nivo alone. Having said that one really does not know as you can attest to. Bummer it hit you right away after solo nivo. 

How was tapering the steroids for you? Muscle weakness and fatigue are a bugger for sure. He has had me on fentanyl patch to help with soreness and the binding attributes (an opioid side effect that has helped). No more lomotol.

Good luck getting back on successfully!

Hey Mat,

Hope your having luck with all this. Thanks for the advise regarding getting back on the solo Nivo. The doc is trying to get me to 1.5 mg dex. (approx 10 mg prednisone) just prior to Nivo next Tues. He really thinks the bulk of the side effects were the Ipi with what has been seen with nivo alone. Having said that one really does not know as you can attest to. Bummer it hit you right away after solo nivo. 

How was tapering the steroids for you? Muscle weakness and fatigue are a bugger for sure. He has had me on fentanyl patch to help with soreness and the binding attributes (an opioid side effect that has helped). No more lomotol.

Good luck getting back on successfully!

Hey Mat,

Hope your having luck with all this. Thanks for the advise regarding getting back on the solo Nivo. The doc is trying to get me to 1.5 mg dex. (approx 10 mg prednisone) just prior to Nivo next Tues. He really thinks the bulk of the side effects were the Ipi with what has been seen with nivo alone. Having said that one really does not know as you can attest to. Bummer it hit you right away after solo nivo. 

How was tapering the steroids for you? Muscle weakness and fatigue are a bugger for sure. He has had me on fentanyl patch to help with soreness and the binding attributes (an opioid side effect that has helped). No more lomotol.

Good luck getting back on successfully!