› Forums › General Melanoma Community › Yervoy – How long until it “works”?
- This topic has 21 replies, 4 voices, and was last updated 10 years, 5 months ago by
HopefulOne.
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- November 4, 2013 at 3:59 pm
Hi there … my husband had his last infusion on September 10 (he's been Stage IV since May). Had his PET scan last Tuesday (7 weeks after that last infusion) and we got the report Saturday (don't see oncologist until tomorrow afternoon). In it … it shows some lymph node involvement (2 with low SUVs), an area of soft tissue density in his chest and some other new focus with increased activity in his thighs. I know we'll find out our course of action tomorrow – but just wondering if the Yervoy needs more time to work its potential magic. Any thoughts/experiences? Trying to think/hope the doctor would have called us last week if she was overly concerned … but then again just wondering if she was waiting to have a more indepth conversation with us tomorrow … Thanks …
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- November 4, 2013 at 9:26 pm
I think different doctors may approach these follow up scans differently, so I'm not sure what your doctor will tell you/how long they'll wait to see a response.
I can tell you that I had my last dose mid August and had a follow up scan 4 weeks later (a little earlier than your husband). My doctor treated this first scan as a "new baseline" because there can be (and was for me) some growth and new tumors during the course of the infusions. From that new baseline scan we repeated scans about 8 weeks later (so just recently). Had I began to notice new tumors or had any other symptoms I would have called him and we would have scanned sonner, but as it was that has been my schedule so far. The results of my recent scans are a little mixed- no new but some smaller some maybe a little bigger (but not much) so my local guy is sending up to my specialist to get his opinion and if necessary discuss trials.
I think different doctors have different comfort levels regarding how long to watch before making the decision that it isn't working but it may be that as long as he's not having symptoms from his tumors that they'll give it another month or so before making a final decision about efficacy.
Eva
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- November 4, 2013 at 9:26 pm
I think different doctors may approach these follow up scans differently, so I'm not sure what your doctor will tell you/how long they'll wait to see a response.
I can tell you that I had my last dose mid August and had a follow up scan 4 weeks later (a little earlier than your husband). My doctor treated this first scan as a "new baseline" because there can be (and was for me) some growth and new tumors during the course of the infusions. From that new baseline scan we repeated scans about 8 weeks later (so just recently). Had I began to notice new tumors or had any other symptoms I would have called him and we would have scanned sonner, but as it was that has been my schedule so far. The results of my recent scans are a little mixed- no new but some smaller some maybe a little bigger (but not much) so my local guy is sending up to my specialist to get his opinion and if necessary discuss trials.
I think different doctors have different comfort levels regarding how long to watch before making the decision that it isn't working but it may be that as long as he's not having symptoms from his tumors that they'll give it another month or so before making a final decision about efficacy.
Eva
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- November 4, 2013 at 9:26 pm
I think different doctors may approach these follow up scans differently, so I'm not sure what your doctor will tell you/how long they'll wait to see a response.
I can tell you that I had my last dose mid August and had a follow up scan 4 weeks later (a little earlier than your husband). My doctor treated this first scan as a "new baseline" because there can be (and was for me) some growth and new tumors during the course of the infusions. From that new baseline scan we repeated scans about 8 weeks later (so just recently). Had I began to notice new tumors or had any other symptoms I would have called him and we would have scanned sonner, but as it was that has been my schedule so far. The results of my recent scans are a little mixed- no new but some smaller some maybe a little bigger (but not much) so my local guy is sending up to my specialist to get his opinion and if necessary discuss trials.
I think different doctors have different comfort levels regarding how long to watch before making the decision that it isn't working but it may be that as long as he's not having symptoms from his tumors that they'll give it another month or so before making a final decision about efficacy.
Eva
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- November 5, 2013 at 2:51 pm
Thank you for your reply. We'll know what's up in about 5 hours. I'm thinking/hoping for a "wait and see" approach for now … Good luck with your journey.
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- November 5, 2013 at 2:51 pm
Thank you for your reply. We'll know what's up in about 5 hours. I'm thinking/hoping for a "wait and see" approach for now … Good luck with your journey.
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- November 5, 2013 at 2:51 pm
Thank you for your reply. We'll know what's up in about 5 hours. I'm thinking/hoping for a "wait and see" approach for now … Good luck with your journey.
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- November 5, 2013 at 5:38 am
It can take up to a year for Yervoy (Ipi) to show it's working. Often the tumors appear to grow duriing the fight with the immune system. Most cases that are reacting favorably show activity within a few months.
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- November 5, 2013 at 2:52 pm
Wow – a year! That seems like a lot of time to wait … but I guess if they are monitoring things – they'll get a sense of if some type of intervention (surgical, etc.) is necessary. Thank you for your response.
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- November 5, 2013 at 2:52 pm
Wow – a year! That seems like a lot of time to wait … but I guess if they are monitoring things – they'll get a sense of if some type of intervention (surgical, etc.) is necessary. Thank you for your response.
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- November 5, 2013 at 2:52 pm
Wow – a year! That seems like a lot of time to wait … but I guess if they are monitoring things – they'll get a sense of if some type of intervention (surgical, etc.) is necessary. Thank you for your response.
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- November 5, 2013 at 5:38 am
It can take up to a year for Yervoy (Ipi) to show it's working. Often the tumors appear to grow duriing the fight with the immune system. Most cases that are reacting favorably show activity within a few months.
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- November 5, 2013 at 5:38 am
It can take up to a year for Yervoy (Ipi) to show it's working. Often the tumors appear to grow duriing the fight with the immune system. Most cases that are reacting favorably show activity within a few months.
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- November 5, 2013 at 4:37 pm
Here is a i min 14 sec video where one Onc talks about how she decides when to change treatments.
When to change treatments?
http://www.onclive.com/onclive-tv/ Dr-Brahmer-on-Distinguishing-Be tween-Response-and-Growth 
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- November 5, 2013 at 4:37 pm
Here is a i min 14 sec video where one Onc talks about how she decides when to change treatments.
When to change treatments?
http://www.onclive.com/onclive-tv/ Dr-Brahmer-on-Distinguishing-Be tween-Response-and-Growth -
- November 7, 2013 at 2:38 am
Hi Hopefulone,
I've just read your post, so by now you would probably have the results?
My dad has also recently finished ipi and just had his first scans. We got a mixed response, I'm not sure if anyone else has experienced that, but about 75-80% of his tumors have either disappeared or have shrunk and the other 20-25% have increased in size slightly.
I'm thinking of you and I hope ipi is also your miracle drug!
X
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- November 7, 2013 at 2:38 am
Hi Hopefulone,
I've just read your post, so by now you would probably have the results?
My dad has also recently finished ipi and just had his first scans. We got a mixed response, I'm not sure if anyone else has experienced that, but about 75-80% of his tumors have either disappeared or have shrunk and the other 20-25% have increased in size slightly.
I'm thinking of you and I hope ipi is also your miracle drug!
X
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- November 7, 2013 at 7:42 pm
Hi there,
Thank you for your message. Sorry to hear that you and your dad are going through this but hoping the best for you both. Yes, we did get the results … so after my husband's surgery in May which removed 60% of the tumor around his spinal cord (the radiation was to kill the rest of it) … he had a relatively clear PET scan (I think that scan was in June?). It showed activity in his lower back as expected and a few other areas lit up but nothing of concern. So in our case, we knew we wouldn't have tumor shrinkage as a gauge.
So on this most recent PET, the back was lit up a bit again which they attribute to the healing in that area. Some other areas lit up but had relatively low SUVs. The two that were concerning to me were in his lymph nodes (my husband previously had 31 lymph nodes removed, 11 of which were positive for melanoma) but these new lit-up lymph nodes also had low SUVs. Our oncologist said she's seen this with a lot of her patients on ipi that lymph nodes light up then on the next scan, they are clear.
She explained it that since he's stage IV and we know those microscopic cancer cells are throughout his body if the ipi is doing its job – those areas would light up. Kind of how our lymph nodes enlarge when we have a cold. So for now, she's optimistic (and we are thankful) and we'll get scanned again in February.
Thank you for your thoughts and your wishing ipi be a miracle for us. I wish the same for you and your dad and everyone in this courageous battle with us.
Take care,
Kimberly
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- November 7, 2013 at 7:42 pm
Hi there,
Thank you for your message. Sorry to hear that you and your dad are going through this but hoping the best for you both. Yes, we did get the results … so after my husband's surgery in May which removed 60% of the tumor around his spinal cord (the radiation was to kill the rest of it) … he had a relatively clear PET scan (I think that scan was in June?). It showed activity in his lower back as expected and a few other areas lit up but nothing of concern. So in our case, we knew we wouldn't have tumor shrinkage as a gauge.
So on this most recent PET, the back was lit up a bit again which they attribute to the healing in that area. Some other areas lit up but had relatively low SUVs. The two that were concerning to me were in his lymph nodes (my husband previously had 31 lymph nodes removed, 11 of which were positive for melanoma) but these new lit-up lymph nodes also had low SUVs. Our oncologist said she's seen this with a lot of her patients on ipi that lymph nodes light up then on the next scan, they are clear.
She explained it that since he's stage IV and we know those microscopic cancer cells are throughout his body if the ipi is doing its job – those areas would light up. Kind of how our lymph nodes enlarge when we have a cold. So for now, she's optimistic (and we are thankful) and we'll get scanned again in February.
Thank you for your thoughts and your wishing ipi be a miracle for us. I wish the same for you and your dad and everyone in this courageous battle with us.
Take care,
Kimberly
-
- November 7, 2013 at 7:42 pm
Hi there,
Thank you for your message. Sorry to hear that you and your dad are going through this but hoping the best for you both. Yes, we did get the results … so after my husband's surgery in May which removed 60% of the tumor around his spinal cord (the radiation was to kill the rest of it) … he had a relatively clear PET scan (I think that scan was in June?). It showed activity in his lower back as expected and a few other areas lit up but nothing of concern. So in our case, we knew we wouldn't have tumor shrinkage as a gauge.
So on this most recent PET, the back was lit up a bit again which they attribute to the healing in that area. Some other areas lit up but had relatively low SUVs. The two that were concerning to me were in his lymph nodes (my husband previously had 31 lymph nodes removed, 11 of which were positive for melanoma) but these new lit-up lymph nodes also had low SUVs. Our oncologist said she's seen this with a lot of her patients on ipi that lymph nodes light up then on the next scan, they are clear.
She explained it that since he's stage IV and we know those microscopic cancer cells are throughout his body if the ipi is doing its job – those areas would light up. Kind of how our lymph nodes enlarge when we have a cold. So for now, she's optimistic (and we are thankful) and we'll get scanned again in February.
Thank you for your thoughts and your wishing ipi be a miracle for us. I wish the same for you and your dad and everyone in this courageous battle with us.
Take care,
Kimberly
-
- November 7, 2013 at 2:38 am
Hi Hopefulone,
I've just read your post, so by now you would probably have the results?
My dad has also recently finished ipi and just had his first scans. We got a mixed response, I'm not sure if anyone else has experienced that, but about 75-80% of his tumors have either disappeared or have shrunk and the other 20-25% have increased in size slightly.
I'm thinking of you and I hope ipi is also your miracle drug!
X
-
- November 5, 2013 at 4:37 pm
Here is a i min 14 sec video where one Onc talks about how she decides when to change treatments.
When to change treatments?
http://www.onclive.com/onclive-tv/ Dr-Brahmer-on-Distinguishing-Be tween-Response-and-Growth
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