› Forums › Cutaneous Melanoma Community › please help
- This topic has 42 replies, 10 voices, and was last updated 9 years ago by sweetaugust.
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- April 5, 2015 at 4:39 am
I don’t know what to do. The last 3 day we have been to the ER 4 times. High temp up to 104. They just send us home. He was seeing things and wasn’t making any sense. They said what do you want us to do.. I got his temp down. But now it’s like 83.9 to 94.9. Buy has been in his right mind. The while watching the UK game tonight. He started stuttering hid words and the left side of his lip went up. I called 911 they came took his bp and all and told me it sounds like he has a tumor on the part of his brain that controls his temp. And the pressure prolly caused it all. I called his doc and ask about hospices and he said he don’t think we need it yet that it could be the keytruda killing the cancer. But it’s like every day I’m calling 911 and it’s getting old to them. But what am I to do. I weigh 90 I can’t make him do anything. I have 0 help and 3 kids that I am so missing out on. And I’m so afraid he will have a seizure and come after me, or I will walk in one day and find him….. I don’t know doing something that will scare the shit out of me. I give him His meds over 40 of them all at different times some 2 4 8 12 hours and others as needed. I can’t eat. I don’t know if I’m sick or just scared and my nerves tour up. I don’t know where to turn or what to do. Any advice would be great Thank you. Ps he has tumors in brain bone lung soft skin tissue.
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- April 5, 2015 at 4:54 am
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
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- April 5, 2015 at 4:57 am
I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not -
- April 5, 2015 at 5:05 am
I am 35 yo male who recently was diagnosed with melanoma in situ.
Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering. We males don't want to be soft, and weak. What is your name if may I ask? Eric
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- April 5, 2015 at 5:05 am
I am 35 yo male who recently was diagnosed with melanoma in situ.
Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering. We males don't want to be soft, and weak. What is your name if may I ask? Eric
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- April 5, 2015 at 5:05 am
I am 35 yo male who recently was diagnosed with melanoma in situ.
Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering. We males don't want to be soft, and weak. What is your name if may I ask? Eric
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- April 5, 2015 at 5:25 am
Crystale -
- April 5, 2015 at 5:25 am
Crystale -
- April 5, 2015 at 5:25 am
Crystale -
- April 5, 2015 at 10:05 am
Crystal,
Am I courrect about your husband taking a lot of meds? If so, could one be interacting in a negative way causing some of these issues? I don't mean to frighten you, but has he been checked for possible brain mets? Could it be a reaction to any of the meds? Can you call his doctor? I can't believe the ER wouldn't keep him overnight at least. I am sorry I don't have any answers for you. Pleasae know I am here for you. Hang in there.! Sending you big hugs.
Love and Light
Carole K
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- April 5, 2015 at 10:05 am
Crystal,
Am I courrect about your husband taking a lot of meds? If so, could one be interacting in a negative way causing some of these issues? I don't mean to frighten you, but has he been checked for possible brain mets? Could it be a reaction to any of the meds? Can you call his doctor? I can't believe the ER wouldn't keep him overnight at least. I am sorry I don't have any answers for you. Pleasae know I am here for you. Hang in there.! Sending you big hugs.
Love and Light
Carole K
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- April 5, 2015 at 10:05 am
Crystal,
Am I courrect about your husband taking a lot of meds? If so, could one be interacting in a negative way causing some of these issues? I don't mean to frighten you, but has he been checked for possible brain mets? Could it be a reaction to any of the meds? Can you call his doctor? I can't believe the ER wouldn't keep him overnight at least. I am sorry I don't have any answers for you. Pleasae know I am here for you. Hang in there.! Sending you big hugs.
Love and Light
Carole K
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- April 5, 2015 at 4:57 am
I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not -
- April 5, 2015 at 4:57 am
I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not
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- April 5, 2015 at 10:48 am
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
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- April 5, 2015 at 10:48 am
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
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- April 5, 2015 at 10:48 am
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
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- April 5, 2015 at 4:43 pm
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!
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- April 5, 2015 at 4:43 pm
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!
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- April 5, 2015 at 4:43 pm
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!
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- April 5, 2015 at 6:47 pm
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!
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- April 5, 2015 at 6:47 pm
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!
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- April 5, 2015 at 6:47 pm
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!
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- April 5, 2015 at 8:54 pm
I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all -
- April 5, 2015 at 8:54 pm
I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all -
- April 5, 2015 at 8:54 pm
I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all
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- April 5, 2015 at 10:33 pm
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
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- April 5, 2015 at 10:33 pm
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
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- April 5, 2015 at 10:33 pm
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
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- April 6, 2015 at 12:40 am
Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed
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- April 6, 2015 at 12:40 am
Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed
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- April 6, 2015 at 12:40 am
Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed
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- April 6, 2015 at 1:04 am
You are right. Looks like they go to vandy so should have lots of companies to help I would think.
Artie
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- April 6, 2015 at 1:04 am
You are right. Looks like they go to vandy so should have lots of companies to help I would think.
Artie
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- April 6, 2015 at 1:04 am
You are right. Looks like they go to vandy so should have lots of companies to help I would think.
Artie
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- April 6, 2015 at 1:51 pm
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
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- April 6, 2015 at 1:51 pm
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
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- April 6, 2015 at 1:51 pm
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
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- April 6, 2015 at 8:40 pm
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
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- April 6, 2015 at 8:40 pm
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
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- April 6, 2015 at 8:40 pm
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
Tagged: cutaneous melanoma
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