Last ipi Infusion tomorrow. Now what?

I can appreciate your nerves about what's next, because for me, too, finishing any treatment and waiting is the hardest part, and unfortunately, with the immunotherapies, there is waiting and uncertainty.  Even for patients who have a response to ipilimumab, the pattern can vary widely among individuals.  

Setting expectations is important, so certainly discuss with your doctor.  Try not to assume that an immediate and full response represents failure, because the immune response hopefully initiated by Yervoy can take time to ramp up, sometimes over several months.  Things may even seem worse before improving, even during that next PET scan (or two).  As the immune system hopefully moves in, metabolic activity increases, tumors may appear to be growing as while blood cells attack tumors, etc., all of which can make a PET scan show brighter and larger tumors.  My oncologist has said he's had patients tell him that while the scan looks bad, they feel better than they have in a long time.  It's not an actionable data point, but worth noting that sometimes what looks bad represents good things happening.

Responses can be complete, partial, or none, but it will take a little time to determine that.  Personally, I would try to set my expectation that you won't hear the magical NED term quickly, that will take some time for continued observation and monitoring.  You could see some immediate reduction in tumors, absolutely, but if not, it doesn't mean you've failed ipilimumab.  Because or this nature of responses to Yervoy, defining failure can be vague.  For purposes of "failing" and then being eligible, for example, for an anti-PD-1 EAP, anything less than a complete response or any disease progression should suffice as failing, or "being refractory" to ipilimumab.  What makes it difficult is knowing when to decide that it hasn't worked and when to wait, again something to work closely with your doctors.  I don't like the word failure, it's too easy to take personally — try to remember that you didn't fail, only that if you find yourself hearing that, the treatment didn't work 100%.  That's O.K. and there will be new options available to you as a result.

From what I've discussed with my doctor and heard from others is that the role of maintenance "boosters" (given every three months) or possible retreatment with another full course of Yervoy is also unclear.  I don't think a complete responder would get either, nor would a non-responder, but in between is that large range of partial responders who may have a delayed response over several months! and there I think the jury is out about additional doses.  I'm sure some here have received them and had benefit.  I've also heard about battles with insurance companies to get additional doses beyond the standard four-dose treatment.  But it's something that you should be working with your doctor to understand and get their assistance if they think it's the correct thing to do.

Wishing you the best as you try to wait patiently.  Of course continue to be on the lookout for any of the side-effects and report them promptly.  Like a response, the immune-related side-effects themselves can occur months after finishing treatment.  For many, myself included, the waiting is the hardest part.  Nothing like the immediacy of a surgery where you can come out and hear, "We got it all."

Blessings,

Joe

I can appreciate your nerves about what's next, because for me, too, finishing any treatment and waiting is the hardest part, and unfortunately, with the immunotherapies, there is waiting and uncertainty.  Even for patients who have a response to ipilimumab, the pattern can vary widely among individuals.  

Setting expectations is important, so certainly discuss with your doctor.  Try not to assume that an immediate and full response represents failure, because the immune response hopefully initiated by Yervoy can take time to ramp up, sometimes over several months.  Things may even seem worse before improving, even during that next PET scan (or two).  As the immune system hopefully moves in, metabolic activity increases, tumors may appear to be growing as while blood cells attack tumors, etc., all of which can make a PET scan show brighter and larger tumors.  My oncologist has said he's had patients tell him that while the scan looks bad, they feel better than they have in a long time.  It's not an actionable data point, but worth noting that sometimes what looks bad represents good things happening.

Responses can be complete, partial, or none, but it will take a little time to determine that.  Personally, I would try to set my expectation that you won't hear the magical NED term quickly, that will take some time for continued observation and monitoring.  You could see some immediate reduction in tumors, absolutely, but if not, it doesn't mean you've failed ipilimumab.  Because or this nature of responses to Yervoy, defining failure can be vague.  For purposes of "failing" and then being eligible, for example, for an anti-PD-1 EAP, anything less than a complete response or any disease progression should suffice as failing, or "being refractory" to ipilimumab.  What makes it difficult is knowing when to decide that it hasn't worked and when to wait, again something to work closely with your doctors.  I don't like the word failure, it's too easy to take personally — try to remember that you didn't fail, only that if you find yourself hearing that, the treatment didn't work 100%.  That's O.K. and there will be new options available to you as a result.

From what I've discussed with my doctor and heard from others is that the role of maintenance "boosters" (given every three months) or possible retreatment with another full course of Yervoy is also unclear.  I don't think a complete responder would get either, nor would a non-responder, but in between is that large range of partial responders who may have a delayed response over several months! and there I think the jury is out about additional doses.  I'm sure some here have received them and had benefit.  I've also heard about battles with insurance companies to get additional doses beyond the standard four-dose treatment.  But it's something that you should be working with your doctor to understand and get their assistance if they think it's the correct thing to do.

Wishing you the best as you try to wait patiently.  Of course continue to be on the lookout for any of the side-effects and report them promptly.  Like a response, the immune-related side-effects themselves can occur months after finishing treatment.  For many, myself included, the waiting is the hardest part.  Nothing like the immediacy of a surgery where you can come out and hear, "We got it all."

Blessings,

Joe

I can appreciate your nerves about what's next, because for me, too, finishing any treatment and waiting is the hardest part, and unfortunately, with the immunotherapies, there is waiting and uncertainty.  Even for patients who have a response to ipilimumab, the pattern can vary widely among individuals.  

Setting expectations is important, so certainly discuss with your doctor.  Try not to assume that an immediate and full response represents failure, because the immune response hopefully initiated by Yervoy can take time to ramp up, sometimes over several months.  Things may even seem worse before improving, even during that next PET scan (or two).  As the immune system hopefully moves in, metabolic activity increases, tumors may appear to be growing as while blood cells attack tumors, etc., all of which can make a PET scan show brighter and larger tumors.  My oncologist has said he's had patients tell him that while the scan looks bad, they feel better than they have in a long time.  It's not an actionable data point, but worth noting that sometimes what looks bad represents good things happening.

Responses can be complete, partial, or none, but it will take a little time to determine that.  Personally, I would try to set my expectation that you won't hear the magical NED term quickly, that will take some time for continued observation and monitoring.  You could see some immediate reduction in tumors, absolutely, but if not, it doesn't mean you've failed ipilimumab.  Because or this nature of responses to Yervoy, defining failure can be vague.  For purposes of "failing" and then being eligible, for example, for an anti-PD-1 EAP, anything less than a complete response or any disease progression should suffice as failing, or "being refractory" to ipilimumab.  What makes it difficult is knowing when to decide that it hasn't worked and when to wait, again something to work closely with your doctors.  I don't like the word failure, it's too easy to take personally — try to remember that you didn't fail, only that if you find yourself hearing that, the treatment didn't work 100%.  That's O.K. and there will be new options available to you as a result.

From what I've discussed with my doctor and heard from others is that the role of maintenance "boosters" (given every three months) or possible retreatment with another full course of Yervoy is also unclear.  I don't think a complete responder would get either, nor would a non-responder, but in between is that large range of partial responders who may have a delayed response over several months! and there I think the jury is out about additional doses.  I'm sure some here have received them and had benefit.  I've also heard about battles with insurance companies to get additional doses beyond the standard four-dose treatment.  But it's something that you should be working with your doctor to understand and get their assistance if they think it's the correct thing to do.

Wishing you the best as you try to wait patiently.  Of course continue to be on the lookout for any of the side-effects and report them promptly.  Like a response, the immune-related side-effects themselves can occur months after finishing treatment.  For many, myself included, the waiting is the hardest part.  Nothing like the immediacy of a surgery where you can come out and hear, "We got it all."

Blessings,

Joe

Hey MixtaJones

Congrats of getting through the full Yervoy infusion cycle without any side effects that could have taken you off it.  I have done Yetvoy twice thus far (once on a brain lesion and the second post a surgical resection of the same spot). Both times the waiting game part of it was waiting for the first, and then second,  post Yervoy infusion scans three months then another three months out. Was extremely interesting to see a tumor that was visible on a scan turn into a dried up piece of sand over the next few scan periods. In my case I was a responder to Yervoy but needed the second go round and the surgical resection as the tumor did recur. The good news though was the pathology report showed that the tumor thateas remover was 90% dead 

Hey MixtaJones

Congrats of getting through the full Yervoy infusion cycle without any side effects that could have taken you off it.  I have done Yetvoy twice thus far (once on a brain lesion and the second post a surgical resection of the same spot). Both times the waiting game part of it was waiting for the first, and then second,  post Yervoy infusion scans three months then another three months out. Was extremely interesting to see a tumor that was visible on a scan turn into a dried up piece of sand over the next few scan periods. In my case I was a responder to Yervoy but needed the second go round and the surgical resection as the tumor did recur. The good news though was the pathology report showed that the tumor thateas remover was 90% dead 

Hey MixtaJones

Congrats of getting through the full Yervoy infusion cycle without any side effects that could have taken you off it.  I have done Yetvoy twice thus far (once on a brain lesion and the second post a surgical resection of the same spot). Both times the waiting game part of it was waiting for the first, and then second,  post Yervoy infusion scans three months then another three months out. Was extremely interesting to see a tumor that was visible on a scan turn into a dried up piece of sand over the next few scan periods. In my case I was a responder to Yervoy but needed the second go round and the surgical resection as the tumor did recur. The good news though was the pathology report showed that the tumor thateas remover was 90% dead