I’ve been busy

Hey Brad,

Sorry for your new set of circumstances.  I know what it feels like to be in the fying pan, out, and then thrown back in.  Each time you're thrown back in it gets a little harder to stay positive but once the shock wears off you'll get your game face back on. 

For what it's worth, if I was in your shoes I'd be doing exactly what you are looking at. 

Brian

Hey Brad,

Sorry for your new set of circumstances.  I know what it feels like to be in the fying pan, out, and then thrown back in.  Each time you're thrown back in it gets a little harder to stay positive but once the shock wears off you'll get your game face back on. 

For what it's worth, if I was in your shoes I'd be doing exactly what you are looking at. 

Brian

Hey Brad,

Sorry for your new set of circumstances.  I know what it feels like to be in the fying pan, out, and then thrown back in.  Each time you're thrown back in it gets a little harder to stay positive but once the shock wears off you'll get your game face back on. 

For what it's worth, if I was in your shoes I'd be doing exactly what you are looking at. 

Brian

Thank you for the update, even though it is not the news anyone wants to hear.

The ipi/nivo combo (ipi is Yervoy and nivo is Opdivo) has the highest response rates of any of the current immunotherapy options.

Here is the important part, though. It also has the highest rates of side effects. This can vary considerably from patient to patient, and I don't say this to raise concerns about going on the regimen. Rather, my point is this–the best chance of staying on protocol is if you are completely honest with the treatment team. Many of the side effects can be managed if they are caught early. If you try to tough it out things can progress to the point that they cannot be managed easily.

A lot of people are reluctant to talk about things they are experiencing–afraid to disappoint the doctor, worried they will be taken off the drugs that could save their life, etc. In the case of these drugs, however, the approach of trying to make it through is the worst thing you can do. 

I hope the treatment goes smoothly for you, and that you have an outstanding response.

Tim–MRF

Thank you for the update, even though it is not the news anyone wants to hear.

The ipi/nivo combo (ipi is Yervoy and nivo is Opdivo) has the highest response rates of any of the current immunotherapy options.

Here is the important part, though. It also has the highest rates of side effects. This can vary considerably from patient to patient, and I don't say this to raise concerns about going on the regimen. Rather, my point is this–the best chance of staying on protocol is if you are completely honest with the treatment team. Many of the side effects can be managed if they are caught early. If you try to tough it out things can progress to the point that they cannot be managed easily.

A lot of people are reluctant to talk about things they are experiencing–afraid to disappoint the doctor, worried they will be taken off the drugs that could save their life, etc. In the case of these drugs, however, the approach of trying to make it through is the worst thing you can do. 

I hope the treatment goes smoothly for you, and that you have an outstanding response.

Tim–MRF

Thank you for the update, even though it is not the news anyone wants to hear.

The ipi/nivo combo (ipi is Yervoy and nivo is Opdivo) has the highest response rates of any of the current immunotherapy options.

Here is the important part, though. It also has the highest rates of side effects. This can vary considerably from patient to patient, and I don't say this to raise concerns about going on the regimen. Rather, my point is this–the best chance of staying on protocol is if you are completely honest with the treatment team. Many of the side effects can be managed if they are caught early. If you try to tough it out things can progress to the point that they cannot be managed easily.

A lot of people are reluctant to talk about things they are experiencing–afraid to disappoint the doctor, worried they will be taken off the drugs that could save their life, etc. In the case of these drugs, however, the approach of trying to make it through is the worst thing you can do. 

I hope the treatment goes smoothly for you, and that you have an outstanding response.

Tim–MRF

Don't forget to discuss drugs like Zometa to help stabilize your bones to avoid fracture due to the tumors.  It is used to treat osteoporosis.

Don't forget to discuss drugs like Zometa to help stabilize your bones to avoid fracture due to the tumors.  It is used to treat osteoporosis.

Don't forget to discuss drugs like Zometa to help stabilize your bones to avoid fracture due to the tumors.  It is used to treat osteoporosis.

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

Hi Brad,

I'm currently on ipi nivo due to multiple liver mets. Made it through two infusions with minimal side effects but number three was postponed 10 days ago due to raised liver enzymes- likely due to the drugs.  Main take away- side efects seem to vary hugely for individuals- keep talking- as if something is kicking off easier to kick it in to the long grass with steroids if caught early,,,and if the job of ipi is to super charge the immume system and you start getting auto immune side effects– you have probably had a big enough dose for it to get to work— no point over doing it as the rest of your body can suffer for it.   There can be rapid responses to this regime and needing steroids does not seem to undo the beneficial effects– good responses seen from those who have had less than the standard four doses.

Side effects do seem scary.. but with good communication and a high index of suspiscion from your team for me the risks were worth the higher expected response rates- especially as I am BRAF wild type. Plus looks like you will be attacking via three routes- radiation and ipi nivo- in quick succession which is good.

Even if you have probs with Ipi.. you are likely to be able to tone it down and continue with nivo only. Daft part is am currently on 50mg Prednisolone a day and am no where near as fatigued as I have been in months… although liver enzymes – ALT ,AST and GGT are not yet decreasing significantly- currently being monitored every 3-4 days . Nothing has gone over 5 times upper limit yet- but close- and LDH has fallen since starting the steroids.

Take heart -you are not alone and experience of managing and catching the side effects early is mounting-but if your probs are frequent bowel movements- it is down to you to report …like Tim says- toughing it out and not reporting can lead to worse problems than necessary. Sorry if this sounds preachy- I'm on a trial to see if experienced teams managing the regime get fewre high grade side effects and am contacted weekly by phone to see how things are going. They are trying hard to monitor symptoms closely.

Hugs and good wishes to all dealing with the pain – emotional and physical of this disease. Just wish I had a magic wand to fix things. 

wishing you well

Deb

In june I found out I had 7 mets in my lungs and did research before seeing my dr and already knew I wanted the combo and he agreed. I am the first veteran at Audie Murphy VA Hospital in San Antonio to get the combo. I made it trhough th first 4 combo doses with mild side effects that I was able to deal with, rash, fever, fatigue, loss of appetite, dry mouth but I was so happy when the rash came the first week. It meant my body was reacting to it. At 14 weeks 3 mets were gone, or to small to see, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1 cm from 1.4 and 1.5 with no new mets. I would say I am not the nrom on the side effects as mine were mild, been working 40 hours a week since the 4th or 5th week. I'm not sure what other options you would have but I never question whether I wanted the combo as I didn't want to mess around. Last visit my oncol talked about not restarting the yervoy, this friday I start back on both for the maintanance period. He said the yervoy stays active in the immune system for a long time. I told him I would rather have both until my next scan which is in january. My christmas day will probably be spent in bed as usually the first couple of days after there is fatigue but for me it wasn't devestating, just tired. Agian I think my experienc on the combo has been better than most as for as side effects, I have not had to miss a dose yet and get number 9 friday. Good luck and look forward to hearing your success story.

In june I found out I had 7 mets in my lungs and did research before seeing my dr and already knew I wanted the combo and he agreed. I am the first veteran at Audie Murphy VA Hospital in San Antonio to get the combo. I made it trhough th first 4 combo doses with mild side effects that I was able to deal with, rash, fever, fatigue, loss of appetite, dry mouth but I was so happy when the rash came the first week. It meant my body was reacting to it. At 14 weeks 3 mets were gone, or to small to see, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1 cm from 1.4 and 1.5 with no new mets. I would say I am not the nrom on the side effects as mine were mild, been working 40 hours a week since the 4th or 5th week. I'm not sure what other options you would have but I never question whether I wanted the combo as I didn't want to mess around. Last visit my oncol talked about not restarting the yervoy, this friday I start back on both for the maintanance period. He said the yervoy stays active in the immune system for a long time. I told him I would rather have both until my next scan which is in january. My christmas day will probably be spent in bed as usually the first couple of days after there is fatigue but for me it wasn't devestating, just tired. Agian I think my experienc on the combo has been better than most as for as side effects, I have not had to miss a dose yet and get number 9 friday. Good luck and look forward to hearing your success story.

In june I found out I had 7 mets in my lungs and did research before seeing my dr and already knew I wanted the combo and he agreed. I am the first veteran at Audie Murphy VA Hospital in San Antonio to get the combo. I made it trhough th first 4 combo doses with mild side effects that I was able to deal with, rash, fever, fatigue, loss of appetite, dry mouth but I was so happy when the rash came the first week. It meant my body was reacting to it. At 14 weeks 3 mets were gone, or to small to see, 2 were down to 2mm and 2.5 mm and the other 2 were down to 1 cm from 1.4 and 1.5 with no new mets. I would say I am not the nrom on the side effects as mine were mild, been working 40 hours a week since the 4th or 5th week. I'm not sure what other options you would have but I never question whether I wanted the combo as I didn't want to mess around. Last visit my oncol talked about not restarting the yervoy, this friday I start back on both for the maintanance period. He said the yervoy stays active in the immune system for a long time. I told him I would rather have both until my next scan which is in january. My christmas day will probably be spent in bed as usually the first couple of days after there is fatigue but for me it wasn't devestating, just tired. Agian I think my experienc on the combo has been better than most as for as side effects, I have not had to miss a dose yet and get number 9 friday. Good luck and look forward to hearing your success story.

Dear Bradley,

sounds like you are in good hands and you and your doctors are acting quickly….

I am a fan of ipi/nivo combo, just because it is said to have the highest response rate…. You will deal with side effects when/if they come….

Be well and I wish you an amazing response!

Love,

Patrisa

Dear Bradley,

sounds like you are in good hands and you and your doctors are acting quickly….

I am a fan of ipi/nivo combo, just because it is said to have the highest response rate…. You will deal with side effects when/if they come….

Be well and I wish you an amazing response!

Love,

Patrisa

Dear Bradley,

sounds like you are in good hands and you and your doctors are acting quickly….

I am a fan of ipi/nivo combo, just because it is said to have the highest response rate…. You will deal with side effects when/if they come….

Be well and I wish you an amazing response!

Love,

Patrisa

I'm sorry you have to join the circus Brad, but I think the ipi/nivo combo is an excellent plan. The advice you got from Tim is excellent as well, as you know.

I am wishing you the best and you are in my prayers.

– Paul

I'm sorry you have to join the circus Brad, but I think the ipi/nivo combo is an excellent plan. The advice you got from Tim is excellent as well, as you know.

I am wishing you the best and you are in my prayers.

– Paul

I'm sorry you have to join the circus Brad, but I think the ipi/nivo combo is an excellent plan. The advice you got from Tim is excellent as well, as you know.

I am wishing you the best and you are in my prayers.

– Paul