Ipi Clarification

People respond differently to ipi. Some respond quickly and others may respond after a delay of weeks. Some have very few side effects and others have significant struggles with side effects.  I suspect you know your body well enough to know when tumors are smaller. Fingers crossed that you are responding early and well.

Tim–MRF

People respond differently to ipi. Some respond quickly and others may respond after a delay of weeks. Some have very few side effects and others have significant struggles with side effects.  I suspect you know your body well enough to know when tumors are smaller. Fingers crossed that you are responding early and well.

Tim–MRF

People respond differently to ipi. Some respond quickly and others may respond after a delay of weeks. Some have very few side effects and others have significant struggles with side effects.  I suspect you know your body well enough to know when tumors are smaller. Fingers crossed that you are responding early and well.

Tim–MRF

Hey Matt,

That's one of those where I wouldn't try to read too much into it but it certainly does sound pretty darn good.  I remember seeing the below post recently with a couple people relaying similar stories to your's.  I think it is possible to have a pretty quick response to Ipi but also not uncommon to have a delayed response.  Like Tim said, everyone is different.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/ipi-working-after-first-dose

Hey Matt,

That's one of those where I wouldn't try to read too much into it but it certainly does sound pretty darn good.  I remember seeing the below post recently with a couple people relaying similar stories to your's.  I think it is possible to have a pretty quick response to Ipi but also not uncommon to have a delayed response.  Like Tim said, everyone is different.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/ipi-working-after-first-dose

Hey Matt,

That's one of those where I wouldn't try to read too much into it but it certainly does sound pretty darn good.  I remember seeing the below post recently with a couple people relaying similar stories to your's.  I think it is possible to have a pretty quick response to Ipi but also not uncommon to have a delayed response.  Like Tim said, everyone is different.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/ipi-working-after-first-dose

I just finished Yervoy Aug 13th and won't have my scans until Sept 17 so i don't know if it's working for me or not..I didn't have any side effects with it though..Good luck!

I just finished Yervoy Aug 13th and won't have my scans until Sept 17 so i don't know if it's working for me or not..I didn't have any side effects with it though..Good luck!

I just finished Yervoy Aug 13th and won't have my scans until Sept 17 so i don't know if it's working for me or not..I didn't have any side effects with it though..Good luck!

Hi Matt,

My husband was on Ipi/GM-CSF clinical trial and we watched his sub-q's shrink.  He was Stage IV and is now NED.  He had few side effects.  If you would like to read more about his story then check out his profile.

Judy (loving wife of Gene)

Hi Matt,

My husband was on Ipi/GM-CSF clinical trial and we watched his sub-q's shrink.  He was Stage IV and is now NED.  He had few side effects.  If you would like to read more about his story then check out his profile.

Judy (loving wife of Gene)

Hi Matt,

My husband was on Ipi/GM-CSF clinical trial and we watched his sub-q's shrink.  He was Stage IV and is now NED.  He had few side effects.  If you would like to read more about his story then check out his profile.

Judy (loving wife of Gene)

Hi Matt,

My Mom was diagnosed at stage IV and had about 18 tumors on her scalp, 1 on her neck and  behind her ear, 2 in her lungs, and 1 in her liver, kidney and adrenal gland.  She also had 9 brain tumors when she had her fist treatment.  Treatment started with gamma knife radiation for the brain tumors (8 were treated, 1 was thought to be a blood vessel), this was followed by ipi/Yervoy 4 days later.

Like you , she had them in areas where you could see and feel them.  I think, in some cases, that this makes you and her very lucky because you know that something is happening sooner than most.  Her doctor wouldn't say anything was working for a long time. (Basically when the scalp tumors could not be felt anymore. Just color residue remained. Today her scalp is pink and you can only see the white holes where the punch holes were made…) Her doctor didn't  want to give us false hope like you and say it was working, which I understand. But boy did we think he was "crazy" not to say it. – The tumors shrank that much in the first 6 weeks…

My Mom did end up getting more brain tumors, but they were treated in April at USC in LA.  Right now, you would never know that she had anything on her scalp and the scans that she's taken since stopping Yervoy and the last gamma knife treatment are all clear of anything new and the tumors in her trunk are smaller or look like calcium deposit rather than active cancer…. She was one lucky lady!

Her doctor kind of kicked himself for not taking photos of her head when she started Yervoy. And we didn't think about it at first.  Then the tumors were getting so small that we didn't bother since we figured they'd be gone soon…. We wish we'd taken photos. – If you haven't you might…

Anyway, I think it would safe to say that you may very well be responding like my Mom did. You won't know for some time to what extent you've responded, but maybe you'll have a response like hers.  She's doing really well and her doctor is pretty sure that she is going to have a durable response to ipi because her body reacted to it so well.  We still need to watch the brain, but based on whats happened so far I think it would be safe to say that she is well well well out of any danger here.

Hope this helps you. It sounds all good so far.

PS

One thing my Mom mentioned was that the tumors got firmer too. This came along with the tingling. Has anything similar happened to you?  Oh, and one tumor seemed to come back and receded a few times before disappearing.

Hi Matt,

My Mom was diagnosed at stage IV and had about 18 tumors on her scalp, 1 on her neck and  behind her ear, 2 in her lungs, and 1 in her liver, kidney and adrenal gland.  She also had 9 brain tumors when she had her fist treatment.  Treatment started with gamma knife radiation for the brain tumors (8 were treated, 1 was thought to be a blood vessel), this was followed by ipi/Yervoy 4 days later.

Like you , she had them in areas where you could see and feel them.  I think, in some cases, that this makes you and her very lucky because you know that something is happening sooner than most.  Her doctor wouldn't say anything was working for a long time. (Basically when the scalp tumors could not be felt anymore. Just color residue remained. Today her scalp is pink and you can only see the white holes where the punch holes were made…) Her doctor didn't  want to give us false hope like you and say it was working, which I understand. But boy did we think he was "crazy" not to say it. – The tumors shrank that much in the first 6 weeks…

My Mom did end up getting more brain tumors, but they were treated in April at USC in LA.  Right now, you would never know that she had anything on her scalp and the scans that she's taken since stopping Yervoy and the last gamma knife treatment are all clear of anything new and the tumors in her trunk are smaller or look like calcium deposit rather than active cancer…. She was one lucky lady!

Her doctor kind of kicked himself for not taking photos of her head when she started Yervoy. And we didn't think about it at first.  Then the tumors were getting so small that we didn't bother since we figured they'd be gone soon…. We wish we'd taken photos. – If you haven't you might…

Anyway, I think it would safe to say that you may very well be responding like my Mom did. You won't know for some time to what extent you've responded, but maybe you'll have a response like hers.  She's doing really well and her doctor is pretty sure that she is going to have a durable response to ipi because her body reacted to it so well.  We still need to watch the brain, but based on whats happened so far I think it would be safe to say that she is well well well out of any danger here.

Hope this helps you. It sounds all good so far.

PS

One thing my Mom mentioned was that the tumors got firmer too. This came along with the tingling. Has anything similar happened to you?  Oh, and one tumor seemed to come back and receded a few times before disappearing.

Hi Matt,

My Mom was diagnosed at stage IV and had about 18 tumors on her scalp, 1 on her neck and  behind her ear, 2 in her lungs, and 1 in her liver, kidney and adrenal gland.  She also had 9 brain tumors when she had her fist treatment.  Treatment started with gamma knife radiation for the brain tumors (8 were treated, 1 was thought to be a blood vessel), this was followed by ipi/Yervoy 4 days later.

Like you , she had them in areas where you could see and feel them.  I think, in some cases, that this makes you and her very lucky because you know that something is happening sooner than most.  Her doctor wouldn't say anything was working for a long time. (Basically when the scalp tumors could not be felt anymore. Just color residue remained. Today her scalp is pink and you can only see the white holes where the punch holes were made…) Her doctor didn't  want to give us false hope like you and say it was working, which I understand. But boy did we think he was "crazy" not to say it. – The tumors shrank that much in the first 6 weeks…

My Mom did end up getting more brain tumors, but they were treated in April at USC in LA.  Right now, you would never know that she had anything on her scalp and the scans that she's taken since stopping Yervoy and the last gamma knife treatment are all clear of anything new and the tumors in her trunk are smaller or look like calcium deposit rather than active cancer…. She was one lucky lady!

Her doctor kind of kicked himself for not taking photos of her head when she started Yervoy. And we didn't think about it at first.  Then the tumors were getting so small that we didn't bother since we figured they'd be gone soon…. We wish we'd taken photos. – If you haven't you might…

Anyway, I think it would safe to say that you may very well be responding like my Mom did. You won't know for some time to what extent you've responded, but maybe you'll have a response like hers.  She's doing really well and her doctor is pretty sure that she is going to have a durable response to ipi because her body reacted to it so well.  We still need to watch the brain, but based on whats happened so far I think it would be safe to say that she is well well well out of any danger here.

Hope this helps you. It sounds all good so far.

PS

One thing my Mom mentioned was that the tumors got firmer too. This came along with the tingling. Has anything similar happened to you?  Oh, and one tumor seemed to come back and receded a few times before disappearing.