› Forums › General Melanoma Community › Update on daughter with Liver Tumor on Keytruda have questions
- This topic has 33 replies, 7 voices, and was last updated 10 years, 3 months ago by
Scooby123.
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- August 21, 2015 at 12:02 am
I have not posted in a while. My daughter is still plugging along after four rounds of Yervoy and now going on 6th round of Keytruda. Her tumor has shrunk from original 14 cm now down to 9 and while we hoped on her first scan after four rounds of Keytruda she would be able to get it removed, she has now been told she needs a year more of treatment. The cancer is still contained to liver – brain still clear and her numbers and LDH are all in normal range and she feels better than ever. They say that the heat activity is no longer considered "hot melanoma" which I'm a little confused about but they say that means activity is much lower. Does Keytruda take this long to fight this? Can anybody shed some light?
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- August 21, 2015 at 1:04 am
I'm on my 10th Keytruda dose and talk/email one of the leading experts with some regularity. "We just don't know. There's not a lot of data. So new" is the response I've gotten from everyone since late 2014. And it's true. We don't know.
I would say to just hang tight and keep plugging along. Keytruda has been known to take months before people respond. It's also just taken weeks (concieveably). It looks like your daughter may be a responder. That's great.
BTW, my doc leans towards Keytruda taking a bit longer to work and scans every 5 treatments (15 weeks). I've had my 2nd set of scans on it and there's been really nice progress each scan.
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- August 21, 2015 at 1:04 am
I'm on my 10th Keytruda dose and talk/email one of the leading experts with some regularity. "We just don't know. There's not a lot of data. So new" is the response I've gotten from everyone since late 2014. And it's true. We don't know.
I would say to just hang tight and keep plugging along. Keytruda has been known to take months before people respond. It's also just taken weeks (concieveably). It looks like your daughter may be a responder. That's great.
BTW, my doc leans towards Keytruda taking a bit longer to work and scans every 5 treatments (15 weeks). I've had my 2nd set of scans on it and there's been really nice progress each scan.
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- August 21, 2015 at 3:00 am
Thnks Matt. So how many months have you been on it? Did you try Yervoy before that? Good to see there is success on this. It seems she is a responder but like you said, it seems to be a slow process. I know it's keeping it from spreading, so that's a good thing. Stay well!
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- August 21, 2015 at 3:00 am
Thnks Matt. So how many months have you been on it? Did you try Yervoy before that? Good to see there is success on this. It seems she is a responder but like you said, it seems to be a slow process. I know it's keeping it from spreading, so that's a good thing. Stay well!
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- August 21, 2015 at 3:00 am
Thnks Matt. So how many months have you been on it? Did you try Yervoy before that? Good to see there is success on this. It seems she is a responder but like you said, it seems to be a slow process. I know it's keeping it from spreading, so that's a good thing. Stay well!
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- August 21, 2015 at 1:04 am
I'm on my 10th Keytruda dose and talk/email one of the leading experts with some regularity. "We just don't know. There's not a lot of data. So new" is the response I've gotten from everyone since late 2014. And it's true. We don't know.
I would say to just hang tight and keep plugging along. Keytruda has been known to take months before people respond. It's also just taken weeks (concieveably). It looks like your daughter may be a responder. That's great.
BTW, my doc leans towards Keytruda taking a bit longer to work and scans every 5 treatments (15 weeks). I've had my 2nd set of scans on it and there's been really nice progress each scan.
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- August 21, 2015 at 12:24 pm
Hi Jacqueh27, I happy to hear that your daughter is responding. Your question about how long does it take for Pd-1 drugs to work is a good one. The fact that your daughters tumor went from 14cm to 9 cm is fantastic, that means it is working. The tumor could continue to shrink or it may stay at this size on the drug. I don't know the exact % but most people that have responses don't have complete responses where you become NED. For most of us that have had responses to Immunotherapy, we get shrinkage and control of the melanoma from spreading. My tumors in my lung reduced in size at my first scans at 12 weeks and have remained stable for over 1 year. I am part of a trial which scans ever 6 weeks after the first scan at 12 weeks. My trial will end Jan of 2016 and I am looking forward to seeing the data at next years ASCO. Wishing you the best!!! Ed
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- August 21, 2015 at 5:29 pm
I agree with Ed…I think it's working!!! Great! I had a lot of mets and began Keytruda in June of 2014. Some tumors and enlarged nodes responded quickly while others were slower. Every scan looked better and better. I had a PET scan on June 6, 2015 and no evidence of disease was found. I was taken off Keytruda and will have my next scans of Sept. 8th.
Keep shrinking, Liver Tumor!!!!!!!
Best Wishes!
Terrie
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- August 21, 2015 at 5:29 pm
I agree with Ed…I think it's working!!! Great! I had a lot of mets and began Keytruda in June of 2014. Some tumors and enlarged nodes responded quickly while others were slower. Every scan looked better and better. I had a PET scan on June 6, 2015 and no evidence of disease was found. I was taken off Keytruda and will have my next scans of Sept. 8th.
Keep shrinking, Liver Tumor!!!!!!!
Best Wishes!
Terrie
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- August 21, 2015 at 5:29 pm
I agree with Ed…I think it's working!!! Great! I had a lot of mets and began Keytruda in June of 2014. Some tumors and enlarged nodes responded quickly while others were slower. Every scan looked better and better. I had a PET scan on June 6, 2015 and no evidence of disease was found. I was taken off Keytruda and will have my next scans of Sept. 8th.
Keep shrinking, Liver Tumor!!!!!!!
Best Wishes!
Terrie
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- August 21, 2015 at 12:24 pm
Hi Jacqueh27, I happy to hear that your daughter is responding. Your question about how long does it take for Pd-1 drugs to work is a good one. The fact that your daughters tumor went from 14cm to 9 cm is fantastic, that means it is working. The tumor could continue to shrink or it may stay at this size on the drug. I don't know the exact % but most people that have responses don't have complete responses where you become NED. For most of us that have had responses to Immunotherapy, we get shrinkage and control of the melanoma from spreading. My tumors in my lung reduced in size at my first scans at 12 weeks and have remained stable for over 1 year. I am part of a trial which scans ever 6 weeks after the first scan at 12 weeks. My trial will end Jan of 2016 and I am looking forward to seeing the data at next years ASCO. Wishing you the best!!! Ed
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- August 21, 2015 at 12:24 pm
Hi Jacqueh27, I happy to hear that your daughter is responding. Your question about how long does it take for Pd-1 drugs to work is a good one. The fact that your daughters tumor went from 14cm to 9 cm is fantastic, that means it is working. The tumor could continue to shrink or it may stay at this size on the drug. I don't know the exact % but most people that have responses don't have complete responses where you become NED. For most of us that have had responses to Immunotherapy, we get shrinkage and control of the melanoma from spreading. My tumors in my lung reduced in size at my first scans at 12 weeks and have remained stable for over 1 year. I am part of a trial which scans ever 6 weeks after the first scan at 12 weeks. My trial will end Jan of 2016 and I am looking forward to seeing the data at next years ASCO. Wishing you the best!!! Ed
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- August 21, 2015 at 8:22 pm
If I remember right most if not all that shrinkage was before keytruda? Correct? I was on keytruda 12 months and now on opdivo 3 months. I would be concerned if the next keytruda scan does not show shrinkage. If it doesn't I would consider one of the trials that add something to pd1 to hopefully knock that tumor down to surgery size. But if I'm remembering wrong and she is already getting shrinkage from keytruda then yes milk it for all its worth to get that tumor to a smaller size for surgery. At least that's my opinion.
Artie
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- August 21, 2015 at 9:30 pm
Artie, thanks and you remembered correctly. After four infusions no shrinkage. She had been being treated at Mayo but I have not consulted yet with her main Oncologist at Mt Sinai Dr Lutzky who's goal is to get it to resect size. I will be calling him first thing Monday so thank you!
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- August 21, 2015 at 9:30 pm
Artie, thanks and you remembered correctly. After four infusions no shrinkage. She had been being treated at Mayo but I have not consulted yet with her main Oncologist at Mt Sinai Dr Lutzky who's goal is to get it to resect size. I will be calling him first thing Monday so thank you!
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- August 21, 2015 at 9:30 pm
Artie, thanks and you remembered correctly. After four infusions no shrinkage. She had been being treated at Mayo but I have not consulted yet with her main Oncologist at Mt Sinai Dr Lutzky who's goal is to get it to resect size. I will be calling him first thing Monday so thank you!
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- August 21, 2015 at 8:22 pm
If I remember right most if not all that shrinkage was before keytruda? Correct? I was on keytruda 12 months and now on opdivo 3 months. I would be concerned if the next keytruda scan does not show shrinkage. If it doesn't I would consider one of the trials that add something to pd1 to hopefully knock that tumor down to surgery size. But if I'm remembering wrong and she is already getting shrinkage from keytruda then yes milk it for all its worth to get that tumor to a smaller size for surgery. At least that's my opinion.
Artie
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- August 21, 2015 at 8:22 pm
If I remember right most if not all that shrinkage was before keytruda? Correct? I was on keytruda 12 months and now on opdivo 3 months. I would be concerned if the next keytruda scan does not show shrinkage. If it doesn't I would consider one of the trials that add something to pd1 to hopefully knock that tumor down to surgery size. But if I'm remembering wrong and she is already getting shrinkage from keytruda then yes milk it for all its worth to get that tumor to a smaller size for surgery. At least that's my opinion.
Artie
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- August 21, 2015 at 9:26 pm
Thanks everybody. I am feeling encouraged! Good to know that others are responding and it's at least staying "Manageable". I'm very optimistic. I also am remembering that it was after the Yervoy it shrank that many centimeters but I guess the combo of both is helping too because the tumor activity is way lower?
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- August 21, 2015 at 9:26 pm
Thanks everybody. I am feeling encouraged! Good to know that others are responding and it's at least staying "Manageable". I'm very optimistic. I also am remembering that it was after the Yervoy it shrank that many centimeters but I guess the combo of both is helping too because the tumor activity is way lower?
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- August 21, 2015 at 9:26 pm
Thanks everybody. I am feeling encouraged! Good to know that others are responding and it's at least staying "Manageable". I'm very optimistic. I also am remembering that it was after the Yervoy it shrank that many centimeters but I guess the combo of both is helping too because the tumor activity is way lower?
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- August 21, 2015 at 10:02 pm
Hi. My dr basically just divides ppl into two camps on keytruda. Responders and those who don't. So great that your daughter is a responder! I have had 15 infusions and had to stop now due to adverse effects but my lung tumour has reduced by more than half and my Drs feel comfortable with just checking the tumour every 12 weeks with pet scans.
Jubes
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- August 21, 2015 at 10:02 pm
Hi. My dr basically just divides ppl into two camps on keytruda. Responders and those who don't. So great that your daughter is a responder! I have had 15 infusions and had to stop now due to adverse effects but my lung tumour has reduced by more than half and my Drs feel comfortable with just checking the tumour every 12 weeks with pet scans.
Jubes
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- August 21, 2015 at 10:02 pm
Hi. My dr basically just divides ppl into two camps on keytruda. Responders and those who don't. So great that your daughter is a responder! I have had 15 infusions and had to stop now due to adverse effects but my lung tumour has reduced by more than half and my Drs feel comfortable with just checking the tumour every 12 weeks with pet scans.
Jubes
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- August 22, 2015 at 7:43 pm
Hi Jacqueh
What size have they said tumor needs to be before removing it. Plus did you start keytruda straight after ippi or when tumor did not respond to ippi.
Keep well
Scooby123
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- August 23, 2015 at 12:08 am
They only said as small as it could get. I am waiting to hear back from her main oncologist because he seemed he was opting that before she went to Mayo Clinic. She lives in Tallahassee, Fl and I am in Miami where she was treated when living home. She is now getting infusions in Jacksonville at Mayo and the Oncologist there is saying another year. I am hoping to hear from our Dr. here as I just wish they could take it out! It has not spread and I just fear it will like it did after four years of NED. The Keytruda started about two months after Yervoy.
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- August 23, 2015 at 12:08 am
They only said as small as it could get. I am waiting to hear back from her main oncologist because he seemed he was opting that before she went to Mayo Clinic. She lives in Tallahassee, Fl and I am in Miami where she was treated when living home. She is now getting infusions in Jacksonville at Mayo and the Oncologist there is saying another year. I am hoping to hear from our Dr. here as I just wish they could take it out! It has not spread and I just fear it will like it did after four years of NED. The Keytruda started about two months after Yervoy.
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- August 23, 2015 at 12:08 am
They only said as small as it could get. I am waiting to hear back from her main oncologist because he seemed he was opting that before she went to Mayo Clinic. She lives in Tallahassee, Fl and I am in Miami where she was treated when living home. She is now getting infusions in Jacksonville at Mayo and the Oncologist there is saying another year. I am hoping to hear from our Dr. here as I just wish they could take it out! It has not spread and I just fear it will like it did after four years of NED. The Keytruda started about two months after Yervoy.
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