› Forums › General Melanoma Community › PD1 question
- This topic has 48 replies, 8 voices, and was last updated 8 years, 6 months ago by
Coneflowers.
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- October 25, 2015 at 6:27 am
Was wondering if anyone had there lesions grow when the first started PD1? My daughter is on Opdivo and after her first 2 doses her lymph node in her neck enlarged. She also has a skin bump that seems to be growing. Her doctors tell me that it is known that things can get bigger before they get smaller, from the immune system attacking the melanoma but I am nervous. She just had her 6th dose and everything seems to be getting bigger. I should add that her first 2 doses where not at full dose. She has a pet scan scheduled in a month. Her one liver number has come down and is now in normal range, it was climbing up. She has mets in her liver. Thanks in advance!
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- October 25, 2015 at 1:04 pm
My father had his lesions grow after his first dose of PD1. His bowel nearly perforated and he was hospitalized because his bowel metastases grew so much after the dose. His CT scan at that time was read as "progession of metastatic disease".
He is now 7 months into Keytruda and his tumours are approximately 70% gone. I think we started noticing a difference in his tumour size after the 3-4th doses but it takes some people longer.
-msitz
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- October 25, 2015 at 1:04 pm
My father had his lesions grow after his first dose of PD1. His bowel nearly perforated and he was hospitalized because his bowel metastases grew so much after the dose. His CT scan at that time was read as "progession of metastatic disease".
He is now 7 months into Keytruda and his tumours are approximately 70% gone. I think we started noticing a difference in his tumour size after the 3-4th doses but it takes some people longer.
-msitz
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- October 26, 2015 at 7:49 am
Thank you for replying. Do you know how many treatments he has had now?
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- October 26, 2015 at 7:49 am
Thank you for replying. Do you know how many treatments he has had now?
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- October 26, 2015 at 7:49 am
Thank you for replying. Do you know how many treatments he has had now?
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- October 25, 2015 at 1:04 pm
My father had his lesions grow after his first dose of PD1. His bowel nearly perforated and he was hospitalized because his bowel metastases grew so much after the dose. His CT scan at that time was read as "progession of metastatic disease".
He is now 7 months into Keytruda and his tumours are approximately 70% gone. I think we started noticing a difference in his tumour size after the 3-4th doses but it takes some people longer.
-msitz
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- October 25, 2015 at 2:52 pm
Yes things can get bigger before they get smaller with immunotherapy. Something with the tcells getting in there and basically adding mass and swelling.
That being said though with that many doses I would think if it was working at least some tumors would be getting smaller by now. In my opinion you need to get plan b ready to go. I'm not sure how many doses I would continue with it in hopes it is working. I went a whole year since initially some things shrank and added radiation to the worse stuff but still stuff grew and new stuff finally showed up. That was too long. And it took another 5 months to finally get a treatment adding to my pd1.
Artie
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- October 25, 2015 at 2:52 pm
Yes things can get bigger before they get smaller with immunotherapy. Something with the tcells getting in there and basically adding mass and swelling.
That being said though with that many doses I would think if it was working at least some tumors would be getting smaller by now. In my opinion you need to get plan b ready to go. I'm not sure how many doses I would continue with it in hopes it is working. I went a whole year since initially some things shrank and added radiation to the worse stuff but still stuff grew and new stuff finally showed up. That was too long. And it took another 5 months to finally get a treatment adding to my pd1.
Artie
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- October 25, 2015 at 2:52 pm
Yes things can get bigger before they get smaller with immunotherapy. Something with the tcells getting in there and basically adding mass and swelling.
That being said though with that many doses I would think if it was working at least some tumors would be getting smaller by now. In my opinion you need to get plan b ready to go. I'm not sure how many doses I would continue with it in hopes it is working. I went a whole year since initially some things shrank and added radiation to the worse stuff but still stuff grew and new stuff finally showed up. That was too long. And it took another 5 months to finally get a treatment adding to my pd1.
Artie
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- October 25, 2015 at 2:58 pm
I was on the Yervoy/Opdivo trial before it became approved. About six hours after my very first infusion all of my tumors increased in size and were red and itchy. Within a week they shrunk dramatically and at my three-month scans they were gone. 🙂 Hopefully this will be the case for your daughter.
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- October 25, 2015 at 2:58 pm
I was on the Yervoy/Opdivo trial before it became approved. About six hours after my very first infusion all of my tumors increased in size and were red and itchy. Within a week they shrunk dramatically and at my three-month scans they were gone. 🙂 Hopefully this will be the case for your daughter.
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- October 25, 2015 at 2:58 pm
I was on the Yervoy/Opdivo trial before it became approved. About six hours after my very first infusion all of my tumors increased in size and were red and itchy. Within a week they shrunk dramatically and at my three-month scans they were gone. 🙂 Hopefully this will be the case for your daughter.
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- October 25, 2015 at 3:05 pm
All immunotherapy has demonstrated the possibility of tumor growth due to the inflitration of T cells and generalized inflammation prior to shrinkage…something the researchers term pseudoprogression. It was addressed in the second article in this post from ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html
While that post addressed Pembro/Keytruda….Nivo/Opdivo has been noted to have the same possibility. In this webinar for fellow oncologists…Weber and Agarwala address…"being patient with the patient" when waiting for definitive responses and the incidence of pseudoprogression: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hope this helps. Wishing you and your daughter my best. Celeste
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- October 25, 2015 at 3:05 pm
All immunotherapy has demonstrated the possibility of tumor growth due to the inflitration of T cells and generalized inflammation prior to shrinkage…something the researchers term pseudoprogression. It was addressed in the second article in this post from ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html
While that post addressed Pembro/Keytruda….Nivo/Opdivo has been noted to have the same possibility. In this webinar for fellow oncologists…Weber and Agarwala address…"being patient with the patient" when waiting for definitive responses and the incidence of pseudoprogression: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hope this helps. Wishing you and your daughter my best. Celeste
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- October 26, 2015 at 8:22 am
I have been reading some of your blog when I have a chance. I posted about having problems signing up on here. Lol! Thanks for your help and the info!
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- October 26, 2015 at 8:22 am
I have been reading some of your blog when I have a chance. I posted about having problems signing up on here. Lol! Thanks for your help and the info!
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- October 26, 2015 at 8:22 am
I have been reading some of your blog when I have a chance. I posted about having problems signing up on here. Lol! Thanks for your help and the info!
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- October 25, 2015 at 3:05 pm
All immunotherapy has demonstrated the possibility of tumor growth due to the inflitration of T cells and generalized inflammation prior to shrinkage…something the researchers term pseudoprogression. It was addressed in the second article in this post from ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html
While that post addressed Pembro/Keytruda….Nivo/Opdivo has been noted to have the same possibility. In this webinar for fellow oncologists…Weber and Agarwala address…"being patient with the patient" when waiting for definitive responses and the incidence of pseudoprogression: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hope this helps. Wishing you and your daughter my best. Celeste
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- October 26, 2015 at 9:01 am
Thank you everyone for replying 🙂 Her skin bump showed up 2 days after her first infusion. It has gotten bigger, but it seems to just keep changing. I don't know…I really hope it is working, because she has seemed to do well with it. Well as far as I can tell, she is a baby and can not tell me how she feels. But she seems happy.
Did anyone have there tumors tested for pd1 exexpression?
If anyone wants to read my daughter's story, I have a facebook page for her.
It is called – Love for Nora – I started it to help raise awareness for melanoma, pediatric cancer, prayers and in hope to find more answer's. I know many people do not understand melanoma, I was one…I never in a million years would have thought this kind of thing could happen to a newborn.
Amanda
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- October 26, 2015 at 9:01 am
Thank you everyone for replying 🙂 Her skin bump showed up 2 days after her first infusion. It has gotten bigger, but it seems to just keep changing. I don't know…I really hope it is working, because she has seemed to do well with it. Well as far as I can tell, she is a baby and can not tell me how she feels. But she seems happy.
Did anyone have there tumors tested for pd1 exexpression?
If anyone wants to read my daughter's story, I have a facebook page for her.
It is called – Love for Nora – I started it to help raise awareness for melanoma, pediatric cancer, prayers and in hope to find more answer's. I know many people do not understand melanoma, I was one…I never in a million years would have thought this kind of thing could happen to a newborn.
Amanda
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- October 26, 2015 at 9:01 am
Thank you everyone for replying 🙂 Her skin bump showed up 2 days after her first infusion. It has gotten bigger, but it seems to just keep changing. I don't know…I really hope it is working, because she has seemed to do well with it. Well as far as I can tell, she is a baby and can not tell me how she feels. But she seems happy.
Did anyone have there tumors tested for pd1 exexpression?
If anyone wants to read my daughter's story, I have a facebook page for her.
It is called – Love for Nora – I started it to help raise awareness for melanoma, pediatric cancer, prayers and in hope to find more answer's. I know many people do not understand melanoma, I was one…I never in a million years would have thought this kind of thing could happen to a newborn.
Amanda
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- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
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- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
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- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
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- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
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- November 7, 2015 at 2:36 am
Thank you Laurie for sharing your story! I really hope this drug is working for my daughter. She gets scans soon and I am already nervous! Hope something looks better.
Amanda
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- November 7, 2015 at 2:36 am
Thank you Laurie for sharing your story! I really hope this drug is working for my daughter. She gets scans soon and I am already nervous! Hope something looks better.
Amanda
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- November 7, 2015 at 2:36 am
Thank you Laurie for sharing your story! I really hope this drug is working for my daughter. She gets scans soon and I am already nervous! Hope something looks better.
Amanda
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- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
-
- November 2, 2015 at 3:32 pm
My results with Keytruda were mixed at first. After 3 months on it, most of my lymph nodes went back down to a normal size and the big mass on my liver disappeared. But my biggest and worst lymph node in my arm pit had doubled in size. 5 months into treatment of Keytruda that tumor again doubled in size and the docs were going to take me off Keytruda as they thought it wasn't working. But I begged to just give it a bit more time.
So they gave me another month. And a couple weeks later….boom….I woke up in the middle of the night with extreme stabbing pains to that tumor every 5-8 seconds. I called my doctors and I thought I was going to end up in the ER and in surgery. The docs said that they think it means the drug is working and the tumor is dying.
Over night that tumor grew from the size of a peach to the size of a baseball and it was hanging out of my arm pit. Two days later it vanished back into my body. I scanned a few days later and it showed that the tumor had liquified and was likely dead tissue now.
So Keytruda did indeed work for me right away, to get rid of most of the melanoma. But it did take a solid 6 months before my biggest and worst tumor stopped growing and was defeated.
All my best, Laurie
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