Nivo Question/Update

The CT scan of the abdomen is the only scan she has had since completing the doses (actually the only scan since we started back in August when she was diagnosed). She told me the Dr mentioned wanting to compare it with the original PET scan that was completed in August, which indicated where the cancer was. Nothing was mentioned about a full body scan, not sure if that is down the road or not. 

I thought it was a bit unusual too. My mom told me it was actually a CT scan for her chest, abdomen and pelvis. I misunderstood when she mentioned how it was near where the tumor was. She asked if a PET scan would be done, her Dr said no he wanted to see the CT scan that will be done next week and compare it to her PET scan that was done in August. In the notes it mentions restaging/compare.

I am just nervous about this entire thing! Seems so strange to me after reading about so many other people’s stories how they have many PET scans and full body scans etc…

I will mention exercise and such to her, but she tells me walking across the room is exhausting so maybe we will start small and move up to that.

I thought it was a bit unusual too. My mom told me it was actually a CT scan for her chest, abdomen and pelvis. I misunderstood when she mentioned how it was near where the tumor was. She asked if a PET scan would be done, her Dr said no he wanted to see the CT scan that will be done next week and compare it to her PET scan that was done in August. In the notes it mentions restaging/compare.

I am just nervous about this entire thing! Seems so strange to me after reading about so many other people’s stories how they have many PET scans and full body scans etc…

I will mention exercise and such to her, but she tells me walking across the room is exhausting so maybe we will start small and move up to that.

It confuses me too. She even asked the nurses and Dr specifically about if she should get a PET scan to compare and the answer was no. I guess we will have to wait when they call back for her appointment to see if anything changes. I always thought a CT scan had to be compared with a CT scan…same thing for a PET scan. Maybe I’m wrong or he’s looking for something specific…just struck me as a bit odd. Thanks for the input. I’ll post again as we go along here, waiting is the worst part of all of this!

It confuses me too. She even asked the nurses and Dr specifically about if she should get a PET scan to compare and the answer was no. I guess we will have to wait when they call back for her appointment to see if anything changes. I always thought a CT scan had to be compared with a CT scan…same thing for a PET scan. Maybe I’m wrong or he’s looking for something specific…just struck me as a bit odd. Thanks for the input. I’ll post again as we go along here, waiting is the worst part of all of this!

It confuses me too. She even asked the nurses and Dr specifically about if she should get a PET scan to compare and the answer was no. I guess we will have to wait when they call back for her appointment to see if anything changes. I always thought a CT scan had to be compared with a CT scan…same thing for a PET scan. Maybe I’m wrong or he’s looking for something specific…just struck me as a bit odd. Thanks for the input. I’ll post again as we go along here, waiting is the worst part of all of this!

I thought it was a bit unusual too. My mom told me it was actually a CT scan for her chest, abdomen and pelvis. I misunderstood when she mentioned how it was near where the tumor was. She asked if a PET scan would be done, her Dr said no he wanted to see the CT scan that will be done next week and compare it to her PET scan that was done in August. In the notes it mentions restaging/compare.

I am just nervous about this entire thing! Seems so strange to me after reading about so many other people’s stories how they have many PET scans and full body scans etc…

I will mention exercise and such to her, but she tells me walking across the room is exhausting so maybe we will start small and move up to that.

The CT scan of the abdomen is the only scan she has had since completing the doses (actually the only scan since we started back in August when she was diagnosed). She told me the Dr mentioned wanting to compare it with the original PET scan that was completed in August, which indicated where the cancer was. Nothing was mentioned about a full body scan, not sure if that is down the road or not. 

The CT scan of the abdomen is the only scan she has had since completing the doses (actually the only scan since we started back in August when she was diagnosed). She told me the Dr mentioned wanting to compare it with the original PET scan that was completed in August, which indicated where the cancer was. Nothing was mentioned about a full body scan, not sure if that is down the road or not. 

Thank you for posting that information, she actually had 2 of those listed side effects (fatigue and rash) I had heard fatigue was a side effect, but to the extreme my mom has it concerned me (she has also had a horrible rash through this entire journey, almost ripping her skin off at points as well). I guess it makes sense being cumulative, since she started having it after the first infusion in September, to the maintenance phase now, that would explain why the fatigue has gotten so extreme. 

I hope her scans bring good news as well. Not sure how long she will be on the nivo part of the treatment based on the scans, but hopefully we can figure out a way to deal with the fatigue better. 

Thank you for posting that information, she actually had 2 of those listed side effects (fatigue and rash) I had heard fatigue was a side effect, but to the extreme my mom has it concerned me (she has also had a horrible rash through this entire journey, almost ripping her skin off at points as well). I guess it makes sense being cumulative, since she started having it after the first infusion in September, to the maintenance phase now, that would explain why the fatigue has gotten so extreme. 

I hope her scans bring good news as well. Not sure how long she will be on the nivo part of the treatment based on the scans, but hopefully we can figure out a way to deal with the fatigue better. 

Thank you for posting that information, she actually had 2 of those listed side effects (fatigue and rash) I had heard fatigue was a side effect, but to the extreme my mom has it concerned me (she has also had a horrible rash through this entire journey, almost ripping her skin off at points as well). I guess it makes sense being cumulative, since she started having it after the first infusion in September, to the maintenance phase now, that would explain why the fatigue has gotten so extreme. 

I hope her scans bring good news as well. Not sure how long she will be on the nivo part of the treatment based on the scans, but hopefully we can figure out a way to deal with the fatigue better. 

I have to have her ask about adrenal. I know the thyroid came back fine. Each time shes goes theres a page or 2 of bloodwork is done and everything comes back fine (most recently her protein has been lower than normal, but they said that was related to the medicines)

I have to have her ask about adrenal. I know the thyroid came back fine. Each time shes goes theres a page or 2 of bloodwork is done and everything comes back fine (most recently her protein has been lower than normal, but they said that was related to the medicines)

I have to have her ask about adrenal. I know the thyroid came back fine. Each time shes goes theres a page or 2 of bloodwork is done and everything comes back fine (most recently her protein has been lower than normal, but they said that was related to the medicines)

Interesting. I was trying to Google why it would be done this way, but it didn't make much sense, what you explained clarifies it a bit. 

She hasn't had any headaches. Recently she caught a bad headcold that the Dr. checked her out for, he didn't prescribe anything because she has been sneezing/coughing clear mucus, he said there isn't much he can do besides wait for it to pass at this point. Her fatigue has always been pretty bad, I actually think she was better without the steroids the few times she came off of them, but had to go back on again. I'm not sure if her body hasn't adjusted back yet since she was on it for so long and even had muscle loss with the steroid (her legs were weak, physical therapy exercises were included in her day to help keep the muscle built up).

She told him exactly that she has extreme fatigue, and he didn't seem very concerned other than its a side affect, and according to what Bubbles posted it is a cumulative one. We have seen the onc at least every week, sometimes twice a week when her rash and itching was so extreme for extra bloodwork, so I am not entirely sure what he sees that we might be missing. I guess its just nervewrecking to me having her so fatigued and sitting back thinking its a side effect. Her fatigue has gotten worse since she started nivo only so I don't know if that means anything.

Thanks for the great information! Hope things are going well for you. Keeping you (and everyone else on this forum that is fighting) in my thoughts everyday!

Interesting. I was trying to Google why it would be done this way, but it didn't make much sense, what you explained clarifies it a bit. 

She hasn't had any headaches. Recently she caught a bad headcold that the Dr. checked her out for, he didn't prescribe anything because she has been sneezing/coughing clear mucus, he said there isn't much he can do besides wait for it to pass at this point. Her fatigue has always been pretty bad, I actually think she was better without the steroids the few times she came off of them, but had to go back on again. I'm not sure if her body hasn't adjusted back yet since she was on it for so long and even had muscle loss with the steroid (her legs were weak, physical therapy exercises were included in her day to help keep the muscle built up).

She told him exactly that she has extreme fatigue, and he didn't seem very concerned other than its a side affect, and according to what Bubbles posted it is a cumulative one. We have seen the onc at least every week, sometimes twice a week when her rash and itching was so extreme for extra bloodwork, so I am not entirely sure what he sees that we might be missing. I guess its just nervewrecking to me having her so fatigued and sitting back thinking its a side effect. Her fatigue has gotten worse since she started nivo only so I don't know if that means anything.

Thanks for the great information! Hope things are going well for you. Keeping you (and everyone else on this forum that is fighting) in my thoughts everyday!

Interesting. I was trying to Google why it would be done this way, but it didn't make much sense, what you explained clarifies it a bit. 

She hasn't had any headaches. Recently she caught a bad headcold that the Dr. checked her out for, he didn't prescribe anything because she has been sneezing/coughing clear mucus, he said there isn't much he can do besides wait for it to pass at this point. Her fatigue has always been pretty bad, I actually think she was better without the steroids the few times she came off of them, but had to go back on again. I'm not sure if her body hasn't adjusted back yet since she was on it for so long and even had muscle loss with the steroid (her legs were weak, physical therapy exercises were included in her day to help keep the muscle built up).

She told him exactly that she has extreme fatigue, and he didn't seem very concerned other than its a side affect, and according to what Bubbles posted it is a cumulative one. We have seen the onc at least every week, sometimes twice a week when her rash and itching was so extreme for extra bloodwork, so I am not entirely sure what he sees that we might be missing. I guess its just nervewrecking to me having her so fatigued and sitting back thinking its a side effect. Her fatigue has gotten worse since she started nivo only so I don't know if that means anything.

Thanks for the great information! Hope things are going well for you. Keeping you (and everyone else on this forum that is fighting) in my thoughts everyday!

That is amazing you are at the 3 year point! What a good thing to hear! 

I have never heard about using that type of drug, nor was it mentioned the other day when my mom saw her Dr. Maybe the side-effects of it aren't worth it (especially if there is a bleeding risk involved which is why my mom turned away from an initially offered trial), or the Dr is hoping, like you said, that she will adjust over time to the new "normal" so to speak. I'm wondering too if the scans will be every 3 months like you, they mentioned getting on a schedule, and that seems to be the common consensus here. 

Thanks for the info. I am going to ask her to speak to the Dr about hormone levels just to double check, maybe over time she will adjust to it like you did and it may even lessen the longer she is off of the steroids and such.

That is amazing you are at the 3 year point! What a good thing to hear! 

I have never heard about using that type of drug, nor was it mentioned the other day when my mom saw her Dr. Maybe the side-effects of it aren't worth it (especially if there is a bleeding risk involved which is why my mom turned away from an initially offered trial), or the Dr is hoping, like you said, that she will adjust over time to the new "normal" so to speak. I'm wondering too if the scans will be every 3 months like you, they mentioned getting on a schedule, and that seems to be the common consensus here. 

Thanks for the info. I am going to ask her to speak to the Dr about hormone levels just to double check, maybe over time she will adjust to it like you did and it may even lessen the longer she is off of the steroids and such.

That is amazing you are at the 3 year point! What a good thing to hear! 

I have never heard about using that type of drug, nor was it mentioned the other day when my mom saw her Dr. Maybe the side-effects of it aren't worth it (especially if there is a bleeding risk involved which is why my mom turned away from an initially offered trial), or the Dr is hoping, like you said, that she will adjust over time to the new "normal" so to speak. I'm wondering too if the scans will be every 3 months like you, they mentioned getting on a schedule, and that seems to be the common consensus here. 

Thanks for the info. I am going to ask her to speak to the Dr about hormone levels just to double check, maybe over time she will adjust to it like you did and it may even lessen the longer she is off of the steroids and such.