› Forums › General Melanoma Community › Keytruda or the illness itself
- This topic has 15 replies, 2 voices, and was last updated 10 years, 1 month ago by
Beezer.
- Post
-
- July 16, 2015 at 12:16 pm
My poor sister is not doing so well right now, she was hospitalised a few days ago as she lost the use of her legs and arms, she had three doses of ipi and has just had one infusion of keytruda. She also had whole brain radiation done in February but we thought she had recovered from the mobility issues with the WBR but she seems to have relapsed again, we are so distraught right now, we not sure it's the keytruda which was started three weeks ago or is it after last ipi infusion or whether our poor warrior is losing her battle. She is due to have a second infusion of keytruda next week so we are worried they will not give it to her, please can anyone share any insights at all
- Replies
-
-
- July 16, 2015 at 2:42 pm
I've been on both meds you listed. Although such side affects are I assume possible I've never heard of it anywhere near that extent. But that doesn't mean it isn't the meds.
Unfortunately most likely losing the ability of using the arms and legs has to do with the central nervous system. Thus most likely this stupid awful disease in her brain or spinal cord system or both.
I assume she is braf negative. If she wasn't they could add that med to the mix. I seem to remember ricks wife was in big trouble and they did that and she was able to make a recovery.
Artie
-
- July 16, 2015 at 2:42 pm
I've been on both meds you listed. Although such side affects are I assume possible I've never heard of it anywhere near that extent. But that doesn't mean it isn't the meds.
Unfortunately most likely losing the ability of using the arms and legs has to do with the central nervous system. Thus most likely this stupid awful disease in her brain or spinal cord system or both.
I assume she is braf negative. If she wasn't they could add that med to the mix. I seem to remember ricks wife was in big trouble and they did that and she was able to make a recovery.
Artie
-
- July 16, 2015 at 11:14 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 17, 2015 at 1:18 am
That's so sad. It is hard to say if they will continue or not. For me it has always just been up to my blood work. I too walked in for radiation again last winter and after a few treatments was in a wheel chair for awhile off and on. Mine was lack of strength and massive pain. I could at least stand and take a few steps. So it is really up to her doc. If this was still a trial med I would say they wouldn't but since it is FDA approved now it is totally up to the doc and their hospital protocols as far as I know. Also if they decide to hold off they can try later if she gets better. She might also be reacting to the meds they had to give her for colitis. That's just a long shot guess but a little hope to think of. I know the steroids they had me on really affected me in odd ways. Maybe she can work with a good occupational therapist and neurologist to see what is wrong with her mobility. Maybe even do some type of movement exercises with her or for her. Hopefully she is able to eat because she has to get her strength back and somehow move even just a little so her body doesn't start shutting down.
Artie
-
- July 17, 2015 at 9:21 am
Hi artie
god you've been through your own tough battle also and here you are sharing your care and supporting others THANKS from the bottom of my heart you really are a warrior. My sister is also on very high dose Kepra for to keep her seizures at bay so I can hope and pray that it's all these meds that have caused this set back and next week hopefully they will give her the next keytruda infusion. Take care of you too and I will post next week and let you know hopefully how it went
-
- July 17, 2015 at 9:21 am
Hi artie
god you've been through your own tough battle also and here you are sharing your care and supporting others THANKS from the bottom of my heart you really are a warrior. My sister is also on very high dose Kepra for to keep her seizures at bay so I can hope and pray that it's all these meds that have caused this set back and next week hopefully they will give her the next keytruda infusion. Take care of you too and I will post next week and let you know hopefully how it went
-
- July 17, 2015 at 9:21 am
Hi artie
god you've been through your own tough battle also and here you are sharing your care and supporting others THANKS from the bottom of my heart you really are a warrior. My sister is also on very high dose Kepra for to keep her seizures at bay so I can hope and pray that it's all these meds that have caused this set back and next week hopefully they will give her the next keytruda infusion. Take care of you too and I will post next week and let you know hopefully how it went
-
- July 17, 2015 at 1:18 am
That's so sad. It is hard to say if they will continue or not. For me it has always just been up to my blood work. I too walked in for radiation again last winter and after a few treatments was in a wheel chair for awhile off and on. Mine was lack of strength and massive pain. I could at least stand and take a few steps. So it is really up to her doc. If this was still a trial med I would say they wouldn't but since it is FDA approved now it is totally up to the doc and their hospital protocols as far as I know. Also if they decide to hold off they can try later if she gets better. She might also be reacting to the meds they had to give her for colitis. That's just a long shot guess but a little hope to think of. I know the steroids they had me on really affected me in odd ways. Maybe she can work with a good occupational therapist and neurologist to see what is wrong with her mobility. Maybe even do some type of movement exercises with her or for her. Hopefully she is able to eat because she has to get her strength back and somehow move even just a little so her body doesn't start shutting down.
Artie
-
- July 17, 2015 at 1:18 am
That's so sad. It is hard to say if they will continue or not. For me it has always just been up to my blood work. I too walked in for radiation again last winter and after a few treatments was in a wheel chair for awhile off and on. Mine was lack of strength and massive pain. I could at least stand and take a few steps. So it is really up to her doc. If this was still a trial med I would say they wouldn't but since it is FDA approved now it is totally up to the doc and their hospital protocols as far as I know. Also if they decide to hold off they can try later if she gets better. She might also be reacting to the meds they had to give her for colitis. That's just a long shot guess but a little hope to think of. I know the steroids they had me on really affected me in odd ways. Maybe she can work with a good occupational therapist and neurologist to see what is wrong with her mobility. Maybe even do some type of movement exercises with her or for her. Hopefully she is able to eat because she has to get her strength back and somehow move even just a little so her body doesn't start shutting down.
Artie
-
- July 16, 2015 at 11:14 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 16, 2015 at 11:14 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 16, 2015 at 11:19 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 16, 2015 at 11:19 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 16, 2015 at 11:19 pm
Artie
Thankyou for replying, my sister walked into the hospital to have her whole brain radiation but she came home in a wheelchair, so the radiation caused the initial immobility but she was improving but then she got the ipi and reacted badly with colitis so after three infusions was started on keytruda and within two weeks of the keytruda infusion she won't leave the bed and her legs and arms not working I it has been mentioned that it could now be in her spine also we just hope they will give her the next keytruda infusion do you think they can stop after only one infusion, we so want her to get more so that she had a chance
-
- July 16, 2015 at 2:42 pm
I've been on both meds you listed. Although such side affects are I assume possible I've never heard of it anywhere near that extent. But that doesn't mean it isn't the meds.
Unfortunately most likely losing the ability of using the arms and legs has to do with the central nervous system. Thus most likely this stupid awful disease in her brain or spinal cord system or both.
I assume she is braf negative. If she wasn't they could add that med to the mix. I seem to remember ricks wife was in big trouble and they did that and she was able to make a recovery.
Artie
-
- You must be logged in to reply to this topic.