› Forums › General Melanoma Community › Keytruda Low Tumour Burden
- This topic has 12 replies, 4 voices, and was last updated 8 years, 7 months ago by
mrsaxde.
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- September 8, 2015 at 10:39 am
I recently had a PET scan that welcomed me to the stage 4 club.
I have a small met on L2 and one small met 5mm on the liver and some lymph node involvement in the groin.
I met the oncologist today and he wants to start me on Keytruda next week.
He told me that even thou the statistics show only 30 percent response that this is for shrinkage and that he is getting a lot of people that remain stable whilst on Keytruda and that being healthy to start with and with a low tumour burder is a big advantage.
He said if i dont respond he will put me on Opidivo and/or Ipi.
Keytruda is only 30 odd dollars per infusion.
Hey says that I am lucky because it was only just recently approved here in Australia.
I am a bit worried about the side effects but he seemed to downplay them saying most people dont seen to have too many issues with the drugs.
Any tips from people out there pre infusion would be appreciated?
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- September 8, 2015 at 2:22 pm
I am a caregiver, so can only give you that perspective, but my loved one is responding amazing to Keytruda. First set of scans showed mild regression, second set all tumors either shrunk by a significant amount or dissapeared. Many are responding to Keytruda, so yes, good news that your doctor can and will put you on this drug. My LO's side effects have been mild to non existent, but many on here will share their experiences as each patient differs. I read on here that a low tumor burden and being healthy certainly helps, but Keytruda is also working on some patients that have a very high tumor burden. There is more research being conducted on who will truly respond to the PD1 drugs, but for now I would consider it great news that it was recently approved in Australia. The toxicity and side effects are being reported as MUCH milder than the chemo/interferon options.
Good luck with everything.
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- September 10, 2015 at 2:05 am
Let me second this. I also appear to be having an amazing response to Keytruda. I'm hoping that my upcoming CT on Tuesday will confirm that.
My overall tumor burden is pretty low. Several spots just under the top layers of skin near my original excision, and several very small areas on one lung that were too small to light up on a PET scan, but which the oncologist says are almost certainly cancer.
I've had three cycles of Keytruda, following the 4 infusion course of ipi last winter. The ipi kept things at bay. The skin spots changed very little, but appeared to be growing slowly. And when three new ones appeared my doctor decided it was time to move on to Keytruda.
After just one infusion, the spots on my skin began to get softer and thinner. One was round and raised, like a large, purple mole. It is now barely raised at all. Another large spot next to it has had a similar change.
My old oncologist left to go to another hospital just before I started on Keytruda, and my new one never saw the spots before the first infusion. She says I'm responding, and last time I saw her she referred to Keytruda as a "miracle drug."
I hope your experience with it is as good as mine appears to be.
-Bill
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- September 10, 2015 at 2:05 am
Let me second this. I also appear to be having an amazing response to Keytruda. I'm hoping that my upcoming CT on Tuesday will confirm that.
My overall tumor burden is pretty low. Several spots just under the top layers of skin near my original excision, and several very small areas on one lung that were too small to light up on a PET scan, but which the oncologist says are almost certainly cancer.
I've had three cycles of Keytruda, following the 4 infusion course of ipi last winter. The ipi kept things at bay. The skin spots changed very little, but appeared to be growing slowly. And when three new ones appeared my doctor decided it was time to move on to Keytruda.
After just one infusion, the spots on my skin began to get softer and thinner. One was round and raised, like a large, purple mole. It is now barely raised at all. Another large spot next to it has had a similar change.
My old oncologist left to go to another hospital just before I started on Keytruda, and my new one never saw the spots before the first infusion. She says I'm responding, and last time I saw her she referred to Keytruda as a "miracle drug."
I hope your experience with it is as good as mine appears to be.
-Bill
-
- September 10, 2015 at 2:05 am
Let me second this. I also appear to be having an amazing response to Keytruda. I'm hoping that my upcoming CT on Tuesday will confirm that.
My overall tumor burden is pretty low. Several spots just under the top layers of skin near my original excision, and several very small areas on one lung that were too small to light up on a PET scan, but which the oncologist says are almost certainly cancer.
I've had three cycles of Keytruda, following the 4 infusion course of ipi last winter. The ipi kept things at bay. The skin spots changed very little, but appeared to be growing slowly. And when three new ones appeared my doctor decided it was time to move on to Keytruda.
After just one infusion, the spots on my skin began to get softer and thinner. One was round and raised, like a large, purple mole. It is now barely raised at all. Another large spot next to it has had a similar change.
My old oncologist left to go to another hospital just before I started on Keytruda, and my new one never saw the spots before the first infusion. She says I'm responding, and last time I saw her she referred to Keytruda as a "miracle drug."
I hope your experience with it is as good as mine appears to be.
-Bill
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- September 8, 2015 at 2:22 pm
I am a caregiver, so can only give you that perspective, but my loved one is responding amazing to Keytruda. First set of scans showed mild regression, second set all tumors either shrunk by a significant amount or dissapeared. Many are responding to Keytruda, so yes, good news that your doctor can and will put you on this drug. My LO's side effects have been mild to non existent, but many on here will share their experiences as each patient differs. I read on here that a low tumor burden and being healthy certainly helps, but Keytruda is also working on some patients that have a very high tumor burden. There is more research being conducted on who will truly respond to the PD1 drugs, but for now I would consider it great news that it was recently approved in Australia. The toxicity and side effects are being reported as MUCH milder than the chemo/interferon options.
Good luck with everything.
-
- September 8, 2015 at 2:22 pm
I am a caregiver, so can only give you that perspective, but my loved one is responding amazing to Keytruda. First set of scans showed mild regression, second set all tumors either shrunk by a significant amount or dissapeared. Many are responding to Keytruda, so yes, good news that your doctor can and will put you on this drug. My LO's side effects have been mild to non existent, but many on here will share their experiences as each patient differs. I read on here that a low tumor burden and being healthy certainly helps, but Keytruda is also working on some patients that have a very high tumor burden. There is more research being conducted on who will truly respond to the PD1 drugs, but for now I would consider it great news that it was recently approved in Australia. The toxicity and side effects are being reported as MUCH milder than the chemo/interferon options.
Good luck with everything.
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- September 8, 2015 at 5:37 pm
We are in a similar situation. My husband had two mets that were surgically removed in June and he was started on Nivo in July. The doc said if something new shows up we can always start IPI but the side effect profile for Nivo alone is much better then the combo.
My husband will have his next scan on Thursday and he is going to do some localized radiation in the axial where his big tumor was.
The other tidbit we've been told is when starting PD-1s sometime there is a bit of growth before you get shrinkage. So if these next scan show something I am not going to freak out. (Won't be happy but won't be devastated either.)
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- September 8, 2015 at 5:37 pm
We are in a similar situation. My husband had two mets that were surgically removed in June and he was started on Nivo in July. The doc said if something new shows up we can always start IPI but the side effect profile for Nivo alone is much better then the combo.
My husband will have his next scan on Thursday and he is going to do some localized radiation in the axial where his big tumor was.
The other tidbit we've been told is when starting PD-1s sometime there is a bit of growth before you get shrinkage. So if these next scan show something I am not going to freak out. (Won't be happy but won't be devastated either.)
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- September 8, 2015 at 5:37 pm
We are in a similar situation. My husband had two mets that were surgically removed in June and he was started on Nivo in July. The doc said if something new shows up we can always start IPI but the side effect profile for Nivo alone is much better then the combo.
My husband will have his next scan on Thursday and he is going to do some localized radiation in the axial where his big tumor was.
The other tidbit we've been told is when starting PD-1s sometime there is a bit of growth before you get shrinkage. So if these next scan show something I am not going to freak out. (Won't be happy but won't be devastated either.)
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- September 8, 2015 at 11:33 pm
I was on keytruda 12 months. The side affects were very mild. You'll probably see some blood work numbers dip a little bit but they can explain that's the medicine doing its thing and specific reasons. Otherwise I had some mild fevers. Granted everyone is different. There is always a risk. But from what I've read your doc is right. Typically very mild if any side affects.
Artie
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- September 8, 2015 at 11:33 pm
I was on keytruda 12 months. The side affects were very mild. You'll probably see some blood work numbers dip a little bit but they can explain that's the medicine doing its thing and specific reasons. Otherwise I had some mild fevers. Granted everyone is different. There is always a risk. But from what I've read your doc is right. Typically very mild if any side affects.
Artie
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- September 8, 2015 at 11:33 pm
I was on keytruda 12 months. The side affects were very mild. You'll probably see some blood work numbers dip a little bit but they can explain that's the medicine doing its thing and specific reasons. Otherwise I had some mild fevers. Granted everyone is different. There is always a risk. But from what I've read your doc is right. Typically very mild if any side affects.
Artie
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