› Forums › General Melanoma Community › 3 days after nivo/ipi hospitalized with brain edema – insights, comments welcome
- This topic has 16 replies, 3 voices, and was last updated 8 years, 3 months ago by
Judy Steven’s wife.
- Post
-
- February 14, 2017 at 2:13 am
Hi, here's an update on my husband Steven. Mets in brain, and body. WBRT in January. He was tapered off decadron and was taking nothing anymore on Tuesday and Nivo/Ipi started 2 days later. He already was extremely tired after radiation, but tapering off and the infusion all together made him even more exhausted, on Friday, he could hardly do anything and was having a fever. After talking to oncologist I brought him to ER, but nothing really explained the fever and they said it was too early for auto-immune side-effects. MRI was also done, but no real explanation, one big tumor had shrinked they said, other were still there and seemed to have some edema, but they wanted to wait with steroids to soo how it developed, so we went home again with some steroids ' just in case'…. On Satuday he got realy lethargic and confused and bad balance so I called again and ended up in the ER again en they decided to start on steroids by IV, as a tablet at home did not have effect. So now on Monday we are home again, and the IV's with steroids really brought him back. However, it also stopped the immune cells working….so immunotherapy is not doing the work right now. We are going to taper him off in the next weeks, but I'm so nervous that he will get oedema again. Whenever he seems little more confused I get nervous. He then also is difficult to talk to and does not raelise what is going on. Today he's really clear and has insight on how bad he felt this weekend and remembered how weird he reacted to me. But it's very hard dealing with that and I even had to get angry to get him in he car to the ER, he was SO lethargic ! …..sigh…. Any experiences, insigts, helpful comments are welcome
- Replies
-
-
- February 14, 2017 at 5:17 am
Hi Judy – So sorry to hear Steven's had such a rough time. Sitting here with my sister, we've just gone through your post and we both wanted you to know a few things (based on her experience and what we know now).
1) Not sure why they told you the immunotherapy doesn't work while on steroids – it keeps working regardless of the steroids. I have read that steroids can lessen the effect but have never heard they negate it.
2) I'm also disinclined to believe that it was too early for him to have auto-immune side-effects. My sister's 1st infusion caused side effects within a couple of days, so, in her experience, it happened.
3) If you read through other posts on here about ipi/nivo and how it works, you'll find out that, for many people, tumours actually increase in size as they "soak it up" (not sure if that's the right terminology but that's how I think of it). So, those mets, perhaps increasing in size, added to the existing edema caused by brain mets and further edema caused by rads, might've all added up to a "triple whammy" of pressure.
And, just a comment about his lethargy, the docs all told my sister it would be 4 to 6 weeks of lethargy. That was a bit of lie – 6 months of lethargy on average (radio-oncologist says now) so, don't be surprised or unneccesarily worried if he's still lethergic several months from now.
I always like to qualify reponses like this to say that I'm not a mel patient nor a medical person, so, way far from being any kind of expert, but for now, know that in my sister's experience anyway, these things happened to her and ultimately it all turned out to be the treatments doing their jobs (immunotherapy and WBR).
Hope this helps you some!!! You both take care too!! Best thoughts going out to you.
Barb
-
- February 15, 2017 at 5:45 pm
Thank you Barb! Yes they said that with steroids the immunesystem gets less active and actually inactive. They said the immunecells are kinda asleep now, maybe it is because of the high dose of steroids he got for his brain oedema, which is a higher dose than they would give for people with for example severe colitis as side-effect. And they indeed said that with radiation and immunotherapy the mets may actually respond and seem to get bigger, while actually they might be getting smaller eventually, but there is a lot of stuff going on with dying cells, swelling, etc. But it's kinda scary when this happens in the brain. How severe was your sisters lethargy? Steve was not able to take care of himself anymore could not get off toilet, wouldn;t drink by himself, would not feed himself, etc, would just fall asleep on couch and could do that all day.
-
- February 15, 2017 at 5:45 pm
Thank you Barb! Yes they said that with steroids the immunesystem gets less active and actually inactive. They said the immunecells are kinda asleep now, maybe it is because of the high dose of steroids he got for his brain oedema, which is a higher dose than they would give for people with for example severe colitis as side-effect. And they indeed said that with radiation and immunotherapy the mets may actually respond and seem to get bigger, while actually they might be getting smaller eventually, but there is a lot of stuff going on with dying cells, swelling, etc. But it's kinda scary when this happens in the brain. How severe was your sisters lethargy? Steve was not able to take care of himself anymore could not get off toilet, wouldn;t drink by himself, would not feed himself, etc, would just fall asleep on couch and could do that all day.
-
- February 16, 2017 at 5:29 pm
Hi Judy – hope you see this, as a couple of days have gone by now … Her lethargy was extreme. A couple of months in, she had to use her walker again and then it got a bit worse and she had to use a wheelchair when going out. She'd fall asleep in a chair in the midst of conversation. About four months later (after WBR), it began to improve and just before xmas her energy was good enough that she could begin to exercise (the muscle atrophy was extensive). Every single day now it gets better.
Stuff like going to the washroom would've been impossible without the disability aids available, so, if Steven doesn't yet have items like that, he should get them – it'll make things much easier for him!!
His appetite woes could be due to the steroids to some degree – my sister would eat ravenously initially after starting sterioids but that would also wane and she would go through periods where it was all we could do to get her to have a piece of toast. Taste buds go awry as well and foods she once loved now have no appeal. She also developed huge sensitivity to hot & cold with her teeth and had to have everything at room temp.
All of these things were little inconveniences though – a small price to pay. And, as each and every individual is different, Steven may or may not experience some of these effects.
Hope that helps!!
Barb 🙂
-
- February 17, 2017 at 1:07 am
yes, that helps, thank you. Today we saw the oncologist again and we need to increase dosage steroids a little again as he seems to go downhilll on the current dosage. It's good to know that his symptoms are 'normal' how weird that may sound.
-
- February 17, 2017 at 1:07 am
yes, that helps, thank you. Today we saw the oncologist again and we need to increase dosage steroids a little again as he seems to go downhilll on the current dosage. It's good to know that his symptoms are 'normal' how weird that may sound.
-
- February 16, 2017 at 5:29 pm
Hi Judy – hope you see this, as a couple of days have gone by now … Her lethargy was extreme. A couple of months in, she had to use her walker again and then it got a bit worse and she had to use a wheelchair when going out. She'd fall asleep in a chair in the midst of conversation. About four months later (after WBR), it began to improve and just before xmas her energy was good enough that she could begin to exercise (the muscle atrophy was extensive). Every single day now it gets better.
Stuff like going to the washroom would've been impossible without the disability aids available, so, if Steven doesn't yet have items like that, he should get them – it'll make things much easier for him!!
His appetite woes could be due to the steroids to some degree – my sister would eat ravenously initially after starting sterioids but that would also wane and she would go through periods where it was all we could do to get her to have a piece of toast. Taste buds go awry as well and foods she once loved now have no appeal. She also developed huge sensitivity to hot & cold with her teeth and had to have everything at room temp.
All of these things were little inconveniences though – a small price to pay. And, as each and every individual is different, Steven may or may not experience some of these effects.
Hope that helps!!
Barb 🙂
-
- February 15, 2017 at 5:45 pm
Thank you Barb! Yes they said that with steroids the immunesystem gets less active and actually inactive. They said the immunecells are kinda asleep now, maybe it is because of the high dose of steroids he got for his brain oedema, which is a higher dose than they would give for people with for example severe colitis as side-effect. And they indeed said that with radiation and immunotherapy the mets may actually respond and seem to get bigger, while actually they might be getting smaller eventually, but there is a lot of stuff going on with dying cells, swelling, etc. But it's kinda scary when this happens in the brain. How severe was your sisters lethargy? Steve was not able to take care of himself anymore could not get off toilet, wouldn;t drink by himself, would not feed himself, etc, would just fall asleep on couch and could do that all day.
-
- February 14, 2017 at 5:17 am
Hi Judy – So sorry to hear Steven's had such a rough time. Sitting here with my sister, we've just gone through your post and we both wanted you to know a few things (based on her experience and what we know now).
1) Not sure why they told you the immunotherapy doesn't work while on steroids – it keeps working regardless of the steroids. I have read that steroids can lessen the effect but have never heard they negate it.
2) I'm also disinclined to believe that it was too early for him to have auto-immune side-effects. My sister's 1st infusion caused side effects within a couple of days, so, in her experience, it happened.
3) If you read through other posts on here about ipi/nivo and how it works, you'll find out that, for many people, tumours actually increase in size as they "soak it up" (not sure if that's the right terminology but that's how I think of it). So, those mets, perhaps increasing in size, added to the existing edema caused by brain mets and further edema caused by rads, might've all added up to a "triple whammy" of pressure.
And, just a comment about his lethargy, the docs all told my sister it would be 4 to 6 weeks of lethargy. That was a bit of lie – 6 months of lethargy on average (radio-oncologist says now) so, don't be surprised or unneccesarily worried if he's still lethergic several months from now.
I always like to qualify reponses like this to say that I'm not a mel patient nor a medical person, so, way far from being any kind of expert, but for now, know that in my sister's experience anyway, these things happened to her and ultimately it all turned out to be the treatments doing their jobs (immunotherapy and WBR).
Hope this helps you some!!! You both take care too!! Best thoughts going out to you.
Barb
-
- February 14, 2017 at 5:17 am
Hi Judy – So sorry to hear Steven's had such a rough time. Sitting here with my sister, we've just gone through your post and we both wanted you to know a few things (based on her experience and what we know now).
1) Not sure why they told you the immunotherapy doesn't work while on steroids – it keeps working regardless of the steroids. I have read that steroids can lessen the effect but have never heard they negate it.
2) I'm also disinclined to believe that it was too early for him to have auto-immune side-effects. My sister's 1st infusion caused side effects within a couple of days, so, in her experience, it happened.
3) If you read through other posts on here about ipi/nivo and how it works, you'll find out that, for many people, tumours actually increase in size as they "soak it up" (not sure if that's the right terminology but that's how I think of it). So, those mets, perhaps increasing in size, added to the existing edema caused by brain mets and further edema caused by rads, might've all added up to a "triple whammy" of pressure.
And, just a comment about his lethargy, the docs all told my sister it would be 4 to 6 weeks of lethargy. That was a bit of lie – 6 months of lethargy on average (radio-oncologist says now) so, don't be surprised or unneccesarily worried if he's still lethergic several months from now.
I always like to qualify reponses like this to say that I'm not a mel patient nor a medical person, so, way far from being any kind of expert, but for now, know that in my sister's experience anyway, these things happened to her and ultimately it all turned out to be the treatments doing their jobs (immunotherapy and WBR).
Hope this helps you some!!! You both take care too!! Best thoughts going out to you.
Barb
-
- February 14, 2017 at 12:57 pm
Hi Judy,
Just wanted to chime in and say I agree with so much of your first reply. The response times to immunotherapy vary greatly as do the onset of side effects but 3 days is not out of the ball park. Also radiation damage to tumour cells can make them more visible to the immune system… plus Steven could be suffering a bounce back swelling if his previous steroid taper was a bit too fast- doesn't sound like he had much time stable on nil steroids before the ipi nivo was introduced
The steroids do turn down the dial on immune response. but there is now evidence that even if steroids are required. the immunotherapy drugs can stil be working. You can read about psuedo progression on tumours- this is where the cancerous cells get flooded with immune cells – which makes the tumour appear bigger but the cancer bit is not- this is why they had to change the tumour measurement criteria to account for this.
It may feel like two steps back at the moment- but if Steven's body is responding it may be good news and if he is given the drugs again- a bit further out from the radiation you my not see the swelling/ confusion etc.
In my case , was put on high dose steroids 50mg when dose 3 of combo due- high dose for 2 weeks then tapered to 5mg over another 4 weeks- then dose 3 of ipi nivo. Of course liver problems again- but this time put to 10 mg pred and AST and ALT topped out and started to decline on lower dose..dose 4 postoned for a week as still not a grade 1 side effect.. but I think docs were more confident of likely response patterns this time round.
So sorry you are dealing with all of this. It makes planning hopeless and the feeling of loss of control is scary. You are doing a great job. Its the disease and side effects that make him sort of uncooperative .
Have you got him to give you the power to act on his behalf – legal power – if needed ? I have signed the papers for my husband to do so and was pleased it is in place if needed much later on.
Looks like they now have swelling under control- craniotomy not needed to release pressure-and your husband is back to his lethargic but rational self. Have a hug- keep up the good work and watch out for any other side effects- they might be masked by the steroids temporarily.. but reveal themselves as he tapers off them. Usual first ones are rash and gastro – but the variation of onset and severity is astonishing.
Try and take care of yourself too- treatment can be a bit of a marathon of decisions, bad news, hopefulness fear and joy, which is exhausting. Wishing you both the very best . One day at a time and take the small pleasures where you can find them.
Very best of wishes,
Deb
-
- February 15, 2017 at 5:54 pm
Thank you Deb for your kind and hopegiving response. The rollercoaster of fear, decisions, bad news and joy is really what is happening. Came home Monday, feeling wonderful both, and today he's getting more tired again. I also learned that there is a differene in decadron by IV or Pill, he's kinda constipated so pills might not be taken up that well as a shot through IV. Talking to doctors this weekend the conclusion was that the tapering off had been too fast. So now we need to take it more slow. And yes I can act on his behalf, he had arranged that after the first skin-melanoma appeared two weeks ago. And when he was so confused afer his first diagnosis, we also arranged financial stuff, just in case, not a lot of fun to do, but necessary and lowering worry-levels. Thanks Deb.
-
- February 15, 2017 at 5:54 pm
Thank you Deb for your kind and hopegiving response. The rollercoaster of fear, decisions, bad news and joy is really what is happening. Came home Monday, feeling wonderful both, and today he's getting more tired again. I also learned that there is a differene in decadron by IV or Pill, he's kinda constipated so pills might not be taken up that well as a shot through IV. Talking to doctors this weekend the conclusion was that the tapering off had been too fast. So now we need to take it more slow. And yes I can act on his behalf, he had arranged that after the first skin-melanoma appeared two weeks ago. And when he was so confused afer his first diagnosis, we also arranged financial stuff, just in case, not a lot of fun to do, but necessary and lowering worry-levels. Thanks Deb.
-
- February 15, 2017 at 5:54 pm
Thank you Deb for your kind and hopegiving response. The rollercoaster of fear, decisions, bad news and joy is really what is happening. Came home Monday, feeling wonderful both, and today he's getting more tired again. I also learned that there is a differene in decadron by IV or Pill, he's kinda constipated so pills might not be taken up that well as a shot through IV. Talking to doctors this weekend the conclusion was that the tapering off had been too fast. So now we need to take it more slow. And yes I can act on his behalf, he had arranged that after the first skin-melanoma appeared two weeks ago. And when he was so confused afer his first diagnosis, we also arranged financial stuff, just in case, not a lot of fun to do, but necessary and lowering worry-levels. Thanks Deb.
-
- February 14, 2017 at 12:57 pm
Hi Judy,
Just wanted to chime in and say I agree with so much of your first reply. The response times to immunotherapy vary greatly as do the onset of side effects but 3 days is not out of the ball park. Also radiation damage to tumour cells can make them more visible to the immune system… plus Steven could be suffering a bounce back swelling if his previous steroid taper was a bit too fast- doesn't sound like he had much time stable on nil steroids before the ipi nivo was introduced
The steroids do turn down the dial on immune response. but there is now evidence that even if steroids are required. the immunotherapy drugs can stil be working. You can read about psuedo progression on tumours- this is where the cancerous cells get flooded with immune cells – which makes the tumour appear bigger but the cancer bit is not- this is why they had to change the tumour measurement criteria to account for this.
It may feel like two steps back at the moment- but if Steven's body is responding it may be good news and if he is given the drugs again- a bit further out from the radiation you my not see the swelling/ confusion etc.
In my case , was put on high dose steroids 50mg when dose 3 of combo due- high dose for 2 weeks then tapered to 5mg over another 4 weeks- then dose 3 of ipi nivo. Of course liver problems again- but this time put to 10 mg pred and AST and ALT topped out and started to decline on lower dose..dose 4 postoned for a week as still not a grade 1 side effect.. but I think docs were more confident of likely response patterns this time round.
So sorry you are dealing with all of this. It makes planning hopeless and the feeling of loss of control is scary. You are doing a great job. Its the disease and side effects that make him sort of uncooperative .
Have you got him to give you the power to act on his behalf – legal power – if needed ? I have signed the papers for my husband to do so and was pleased it is in place if needed much later on.
Looks like they now have swelling under control- craniotomy not needed to release pressure-and your husband is back to his lethargic but rational self. Have a hug- keep up the good work and watch out for any other side effects- they might be masked by the steroids temporarily.. but reveal themselves as he tapers off them. Usual first ones are rash and gastro – but the variation of onset and severity is astonishing.
Try and take care of yourself too- treatment can be a bit of a marathon of decisions, bad news, hopefulness fear and joy, which is exhausting. Wishing you both the very best . One day at a time and take the small pleasures where you can find them.
Very best of wishes,
Deb
-
- February 14, 2017 at 12:57 pm
Hi Judy,
Just wanted to chime in and say I agree with so much of your first reply. The response times to immunotherapy vary greatly as do the onset of side effects but 3 days is not out of the ball park. Also radiation damage to tumour cells can make them more visible to the immune system… plus Steven could be suffering a bounce back swelling if his previous steroid taper was a bit too fast- doesn't sound like he had much time stable on nil steroids before the ipi nivo was introduced
The steroids do turn down the dial on immune response. but there is now evidence that even if steroids are required. the immunotherapy drugs can stil be working. You can read about psuedo progression on tumours- this is where the cancerous cells get flooded with immune cells – which makes the tumour appear bigger but the cancer bit is not- this is why they had to change the tumour measurement criteria to account for this.
It may feel like two steps back at the moment- but if Steven's body is responding it may be good news and if he is given the drugs again- a bit further out from the radiation you my not see the swelling/ confusion etc.
In my case , was put on high dose steroids 50mg when dose 3 of combo due- high dose for 2 weeks then tapered to 5mg over another 4 weeks- then dose 3 of ipi nivo. Of course liver problems again- but this time put to 10 mg pred and AST and ALT topped out and started to decline on lower dose..dose 4 postoned for a week as still not a grade 1 side effect.. but I think docs were more confident of likely response patterns this time round.
So sorry you are dealing with all of this. It makes planning hopeless and the feeling of loss of control is scary. You are doing a great job. Its the disease and side effects that make him sort of uncooperative .
Have you got him to give you the power to act on his behalf – legal power – if needed ? I have signed the papers for my husband to do so and was pleased it is in place if needed much later on.
Looks like they now have swelling under control- craniotomy not needed to release pressure-and your husband is back to his lethargic but rational self. Have a hug- keep up the good work and watch out for any other side effects- they might be masked by the steroids temporarily.. but reveal themselves as he tapers off them. Usual first ones are rash and gastro – but the variation of onset and severity is astonishing.
Try and take care of yourself too- treatment can be a bit of a marathon of decisions, bad news, hopefulness fear and joy, which is exhausting. Wishing you both the very best . One day at a time and take the small pleasures where you can find them.
Very best of wishes,
Deb
-
- You must be logged in to reply to this topic.