@porrige
Forum Replies Created
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- January 29, 2015 at 10:42 am
I know I am going off topic here, but Bubbles your post reads your were on a drug called Nivo, would that be the same as Nivolumab, as my young sister is travelling to Brisbane as we speak to start this new drug, she has mets to her lungs and brain and although the combo drug she was on is doing its job in her lungs its having no impact on the brain mets, thats why her Onc now starting her on this, would so love to hear your views on it, if indeed it is the drug you were on. She's my little hero and I am her support person, its so hard for us all as she lives in Australia with her kids and husband and we all live in Ireland so we trying to be the best support we can from here.
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- January 29, 2015 at 10:42 am
I know I am going off topic here, but Bubbles your post reads your were on a drug called Nivo, would that be the same as Nivolumab, as my young sister is travelling to Brisbane as we speak to start this new drug, she has mets to her lungs and brain and although the combo drug she was on is doing its job in her lungs its having no impact on the brain mets, thats why her Onc now starting her on this, would so love to hear your views on it, if indeed it is the drug you were on. She's my little hero and I am her support person, its so hard for us all as she lives in Australia with her kids and husband and we all live in Ireland so we trying to be the best support we can from here.
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- January 29, 2015 at 10:42 am
I know I am going off topic here, but Bubbles your post reads your were on a drug called Nivo, would that be the same as Nivolumab, as my young sister is travelling to Brisbane as we speak to start this new drug, she has mets to her lungs and brain and although the combo drug she was on is doing its job in her lungs its having no impact on the brain mets, thats why her Onc now starting her on this, would so love to hear your views on it, if indeed it is the drug you were on. She's my little hero and I am her support person, its so hard for us all as she lives in Australia with her kids and husband and we all live in Ireland so we trying to be the best support we can from here.
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- March 4, 2015 at 4:53 pm
Thank you all for responding, your replys are like gifts to me. I will look into all you have suggested, its just so
lonely and frustrating for me at the moment, cause all I want to do is hold her close to me and smell her sisterly scent and tell her I love her so much and wish I could take all this pain from her. I am hopefull from what I have read that she is suffering from odema of the brain as a result of the radiation, which probably accounts for her headaches and low feelings, she has never not spoken to me since all this started five years ago, so it shows me how fatigued the poor lamb is, but I have still kept my messages going, even if she cannot talk to me or message me I told her I am with her in heart and spirit all the way. I know I will have to allow time, time for her to heal and be back to her ole self again, someone told me last night that we the family and friends of the patient get worried so much when we see how poorly our loved ones are doing, that we forget that what we are actually witnessing, is the treatment plan in action with all its side effects and such, and that once we allow this to take place we will see that its actually the treatment we are looking at and not the actual cancer. Love to you all you, you amazing warriors
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- March 4, 2015 at 4:53 pm
Thank you all for responding, your replys are like gifts to me. I will look into all you have suggested, its just so
lonely and frustrating for me at the moment, cause all I want to do is hold her close to me and smell her sisterly scent and tell her I love her so much and wish I could take all this pain from her. I am hopefull from what I have read that she is suffering from odema of the brain as a result of the radiation, which probably accounts for her headaches and low feelings, she has never not spoken to me since all this started five years ago, so it shows me how fatigued the poor lamb is, but I have still kept my messages going, even if she cannot talk to me or message me I told her I am with her in heart and spirit all the way. I know I will have to allow time, time for her to heal and be back to her ole self again, someone told me last night that we the family and friends of the patient get worried so much when we see how poorly our loved ones are doing, that we forget that what we are actually witnessing, is the treatment plan in action with all its side effects and such, and that once we allow this to take place we will see that its actually the treatment we are looking at and not the actual cancer. Love to you all you, you amazing warriors
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- March 4, 2015 at 4:53 pm
Thank you all for responding, your replys are like gifts to me. I will look into all you have suggested, its just so
lonely and frustrating for me at the moment, cause all I want to do is hold her close to me and smell her sisterly scent and tell her I love her so much and wish I could take all this pain from her. I am hopefull from what I have read that she is suffering from odema of the brain as a result of the radiation, which probably accounts for her headaches and low feelings, she has never not spoken to me since all this started five years ago, so it shows me how fatigued the poor lamb is, but I have still kept my messages going, even if she cannot talk to me or message me I told her I am with her in heart and spirit all the way. I know I will have to allow time, time for her to heal and be back to her ole self again, someone told me last night that we the family and friends of the patient get worried so much when we see how poorly our loved ones are doing, that we forget that what we are actually witnessing, is the treatment plan in action with all its side effects and such, and that once we allow this to take place we will see that its actually the treatment we are looking at and not the actual cancer. Love to you all you, you amazing warriors
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- January 30, 2015 at 11:47 am
Thanks Jubes,
Feeling the support here in Ireland from you all Tis great. Have copied your information this minute on to her husband, when the these radiation sessions are done, it would be fantastic if she could get the Nivo, all we need now is to get her stabilised in order to pass this criteria for the drug.
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- January 30, 2015 at 11:47 am
Thanks Jubes,
Feeling the support here in Ireland from you all Tis great. Have copied your information this minute on to her husband, when the these radiation sessions are done, it would be fantastic if she could get the Nivo, all we need now is to get her stabilised in order to pass this criteria for the drug.
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- January 30, 2015 at 11:47 am
Thanks Jubes,
Feeling the support here in Ireland from you all Tis great. Have copied your information this minute on to her husband, when the these radiation sessions are done, it would be fantastic if she could get the Nivo, all we need now is to get her stabilised in order to pass this criteria for the drug.
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- January 30, 2015 at 10:41 am
Hi Guys, Bubbles,
Thanks for your lovely warm replies, have just come off the phone this minute with my sister and she in floods of tears, while at the hospital she had a brain seizure and even though it was mild enough she is now not allowed to have the drug, so as we speak they are now prepping her for radiation to the brain a mask has been made for her and she starts in awhile she is having three doses over the next three days so as you can imagine I cannot cuddle and kiss her only write and write and phone so its very hard, but she has an amazing husband who will see her through this all I can hope for is that if as the Docs said they can stabilise her she could get the drug later on please God. x
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- January 30, 2015 at 10:41 am
Hi Guys, Bubbles,
Thanks for your lovely warm replies, have just come off the phone this minute with my sister and she in floods of tears, while at the hospital she had a brain seizure and even though it was mild enough she is now not allowed to have the drug, so as we speak they are now prepping her for radiation to the brain a mask has been made for her and she starts in awhile she is having three doses over the next three days so as you can imagine I cannot cuddle and kiss her only write and write and phone so its very hard, but she has an amazing husband who will see her through this all I can hope for is that if as the Docs said they can stabilise her she could get the drug later on please God. x
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- January 30, 2015 at 10:41 am
Hi Guys, Bubbles,
Thanks for your lovely warm replies, have just come off the phone this minute with my sister and she in floods of tears, while at the hospital she had a brain seizure and even though it was mild enough she is now not allowed to have the drug, so as we speak they are now prepping her for radiation to the brain a mask has been made for her and she starts in awhile she is having three doses over the next three days so as you can imagine I cannot cuddle and kiss her only write and write and phone so its very hard, but she has an amazing husband who will see her through this all I can hope for is that if as the Docs said they can stabilise her she could get the drug later on please God. x
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