› Forums › Cutaneous Melanoma Community › ipi nivo quick update brain mets lepto family
- This topic has 15 replies, 5 voices, and was last updated 9 years, 11 months ago by
Janner.
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- December 28, 2015 at 10:07 pm
So, I made it through 2 treatments of ipi/nivo and then hit the ER for a night and the hospital for a 6 day IV treatment. Paperwork says Colitis and I am on big doses of prednisone and working on the step down now.
I am a difficult patient and a control freak so my stay was memorable for many I am sure – I pulled my IV and ran for it the first night in ER after the CT and chest Xray- why stay in ER when you can go home and wait for results- and get a bath?? Plus I have children that needed to have Christmas party stuff done for school – can't do what you need in the hospital for the holidays…Anyway, I had to convinve myself it wasn't prison and the hospital did let me go outside with an escort and I napped in the super warm December sunshine one afternoon – I had secretly escaped earlier with my IV squid and the help of a friend to make sure I wanted to ask for the freedom first…it has to be fun for me too:)
The children came to visit and tortured the nursing staff with the call button – they were trying to turn the tv on…it was quite a surprise for the nurse to see 3 kids in my bed snuggled up coloring pictures but they were very sweet to everyone.
And of course, there is still the obsession with the bugs that I think are crawling in my skin that cannot be seen – that made for a memorable night of some poor nurse searching the bed with tweezers collecting dirt and sending it to the lab. Maybe it is the brain mets, maybe the ipi?
BEST news is the news from the Chest CT is that both lung mets are no longer measurable. There are some swollen nodules that will be monitored but it was nice to see my personal tumor chart drop from 11 mets (brain and lungs) to 9 in the brain – some of which have been hit with cyberknife but are still hanging out.
A few weeks more for brain MRI. I am nervous. I want to continue the treatment. I told Dr. Gibney and anyone else who would listen that I would rather have diarhhea forever than cancer just keep me in the program…we will have to see what they decide. If it looks good I think he will let me stay on Nivo. If MRI shows progression then we need some new options. He mentioned that there is a new brain met trial starting at Lombardi and possibly WBR – but I seem to feel that is palliative only and I want something more aggressive.
I want the children to be old enough to remember what I look like, smell like, what I fussed at them about. I want them to hear my voice as their conscious when they are older and remember their mom. I don't want them to remember only the cancer. I am hopeful for days when I forget that it is even here.
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- December 28, 2015 at 11:38 pm
Gwenmorgan,
Your so right about the things you mention about kids remembering you. I have the same fear with my 3 kids 9,4,1 whatever happens to us we will be forced to deal with and i think i will come to grips with that…have too…however what i cant come to grips with is leaving my children and them not knowing me or me being there to protect them. Not being able to take my sons hunting, fishin, camping. Not being there to see my daughter grow up or get her that horse she wants soooo bad. Scares me like nothing else. Just have to try and keep moving forward and do the best we can cause in the end its all we can do. Good luck
Jamie -
- December 28, 2015 at 11:38 pm
Gwenmorgan,
Your so right about the things you mention about kids remembering you. I have the same fear with my 3 kids 9,4,1 whatever happens to us we will be forced to deal with and i think i will come to grips with that…have too…however what i cant come to grips with is leaving my children and them not knowing me or me being there to protect them. Not being able to take my sons hunting, fishin, camping. Not being there to see my daughter grow up or get her that horse she wants soooo bad. Scares me like nothing else. Just have to try and keep moving forward and do the best we can cause in the end its all we can do. Good luck
Jamie -
- December 28, 2015 at 11:38 pm
Gwenmorgan,
Your so right about the things you mention about kids remembering you. I have the same fear with my 3 kids 9,4,1 whatever happens to us we will be forced to deal with and i think i will come to grips with that…have too…however what i cant come to grips with is leaving my children and them not knowing me or me being there to protect them. Not being able to take my sons hunting, fishin, camping. Not being there to see my daughter grow up or get her that horse she wants soooo bad. Scares me like nothing else. Just have to try and keep moving forward and do the best we can cause in the end its all we can do. Good luck
Jamie -
- December 29, 2015 at 12:25 am
Hi Gwenmorgan, I would have to agree with you about fighting to keep getting the combination. Some times it takes time for the drugs to work. I also agree with you when it comes to whole brain radiation, cognitive decline is a big concern with whole brain radiation which has been proven in recent studies. I have made so many videos for my daughter over the last few years, starting when she was 4 and a half and I am happy to say that she is now 7 and one 1/4. Fraction are important when you are young or dealing with Melanoma!!!! I love your spirit and keep up the good fight!!! Ed
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- December 29, 2015 at 12:25 am
Hi Gwenmorgan, I would have to agree with you about fighting to keep getting the combination. Some times it takes time for the drugs to work. I also agree with you when it comes to whole brain radiation, cognitive decline is a big concern with whole brain radiation which has been proven in recent studies. I have made so many videos for my daughter over the last few years, starting when she was 4 and a half and I am happy to say that she is now 7 and one 1/4. Fraction are important when you are young or dealing with Melanoma!!!! I love your spirit and keep up the good fight!!! Ed
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- December 29, 2015 at 12:25 am
Hi Gwenmorgan, I would have to agree with you about fighting to keep getting the combination. Some times it takes time for the drugs to work. I also agree with you when it comes to whole brain radiation, cognitive decline is a big concern with whole brain radiation which has been proven in recent studies. I have made so many videos for my daughter over the last few years, starting when she was 4 and a half and I am happy to say that she is now 7 and one 1/4. Fraction are important when you are young or dealing with Melanoma!!!! I love your spirit and keep up the good fight!!! Ed
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- December 29, 2015 at 2:20 am
I'm with you about the children. In my case it's a grandchild. My granddaughter is 2 1/2 years old, and is the most beautiful thing in the world. I was diagnosed in January 2013, 6 months before she was born. All along one of my main goals is to make sure that I am around long enough for her to remember me. It's looking like I'm going to achieve that goal.
My scan in September showed shrinking lung mets, and I have several spots on my skin that are also getting thinner and flattening out. I've been getting Keytruda since July. I have my next scan this Thursday.
Keep fighting! You'll make it. It stinks that this has to happen to any of us, but those of us who are dealing with it now have a much better chance than people who were diagnosed not too many years ago.
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- December 29, 2015 at 2:20 am
I'm with you about the children. In my case it's a grandchild. My granddaughter is 2 1/2 years old, and is the most beautiful thing in the world. I was diagnosed in January 2013, 6 months before she was born. All along one of my main goals is to make sure that I am around long enough for her to remember me. It's looking like I'm going to achieve that goal.
My scan in September showed shrinking lung mets, and I have several spots on my skin that are also getting thinner and flattening out. I've been getting Keytruda since July. I have my next scan this Thursday.
Keep fighting! You'll make it. It stinks that this has to happen to any of us, but those of us who are dealing with it now have a much better chance than people who were diagnosed not too many years ago.
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- December 29, 2015 at 2:20 am
I'm with you about the children. In my case it's a grandchild. My granddaughter is 2 1/2 years old, and is the most beautiful thing in the world. I was diagnosed in January 2013, 6 months before she was born. All along one of my main goals is to make sure that I am around long enough for her to remember me. It's looking like I'm going to achieve that goal.
My scan in September showed shrinking lung mets, and I have several spots on my skin that are also getting thinner and flattening out. I've been getting Keytruda since July. I have my next scan this Thursday.
Keep fighting! You'll make it. It stinks that this has to happen to any of us, but those of us who are dealing with it now have a much better chance than people who were diagnosed not too many years ago.
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- December 29, 2015 at 3:46 pm
Thank you! We are starting another video library with me included – for 10 years I have been the photographer so there isn't much with me. Also, I am writing a cookbook for the kids and teaching them how to make each item with me so that they will always have those memories and tastes. Any other ideas are welcome and appreciated!
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- December 29, 2015 at 3:46 pm
Thank you! We are starting another video library with me included – for 10 years I have been the photographer so there isn't much with me. Also, I am writing a cookbook for the kids and teaching them how to make each item with me so that they will always have those memories and tastes. Any other ideas are welcome and appreciated!
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- December 29, 2015 at 3:46 pm
Thank you! We are starting another video library with me included – for 10 years I have been the photographer so there isn't much with me. Also, I am writing a cookbook for the kids and teaching them how to make each item with me so that they will always have those memories and tastes. Any other ideas are welcome and appreciated!
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- December 29, 2015 at 5:04 pm
I could never get my parents to do this, but I like the idea of these books that ask you questions about your life. They have parents and grandparents versions – a Mom version is found here:
This isn't the only one – you can search for others. The questions are just a little more random and therefore more comprehensive (if that makes sense). There were questions I would have never thought to ask and others I would have. It's not video (unless you want to make it that way) but it is something they could read in your handwriting and treasure – for this generation and the next!
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- December 29, 2015 at 5:04 pm
I could never get my parents to do this, but I like the idea of these books that ask you questions about your life. They have parents and grandparents versions – a Mom version is found here:
This isn't the only one – you can search for others. The questions are just a little more random and therefore more comprehensive (if that makes sense). There were questions I would have never thought to ask and others I would have. It's not video (unless you want to make it that way) but it is something they could read in your handwriting and treasure – for this generation and the next!
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- December 29, 2015 at 5:04 pm
I could never get my parents to do this, but I like the idea of these books that ask you questions about your life. They have parents and grandparents versions – a Mom version is found here:
This isn't the only one – you can search for others. The questions are just a little more random and therefore more comprehensive (if that makes sense). There were questions I would have never thought to ask and others I would have. It's not video (unless you want to make it that way) but it is something they could read in your handwriting and treasure – for this generation and the next!
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