please help

Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

Hi crystale

this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

Anne-Louise

Hi crystale

this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

Anne-Louise

Hi crystale

this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

Anne-Louise

Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

Artie

I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

Artie

I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

Artie

Hi Crystale,

Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

[email protected] (contact for the social work department)

(615) 936-2113

And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

http://www.vanderbilthealth.com/main/14145

Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

Best,

Jackie

Hi Crystale,

Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

[email protected] (contact for the social work department)

(615) 936-2113

And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

http://www.vanderbilthealth.com/main/14145

Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

Best,

Jackie

Hi Crystale,

Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

[email protected] (contact for the social work department)

(615) 936-2113

And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

http://www.vanderbilthealth.com/main/14145

Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

Best,

Jackie

Hi Crystale,

I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

Please keep us posted on how he is doing.  All my best, Laurie

Hi Crystale,

I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

Please keep us posted on how he is doing.  All my best, Laurie

Hi Crystale,

I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

Please keep us posted on how he is doing.  All my best, Laurie