susaw

24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp

You might want to read through some of the topics there and then join and post this message.

24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp

You might want to read through some of the topics there and then join and post this message.

24hrmom, there is a caregivers support group here: http://forum.melanomaintl.org/toastforums/toast.asp

You might want to read through some of the topics there and then join and post this message.

My husband just had his third infusion. He has gotten chills a couple of times while we were sitting watching TV. This happened when he first sat down. I think his leather chair which is always cold doesn't help the feeling of coldness any. Today he mentioned that he has a very slight diarrhea problem. We'll call the doctor tomorrow as instructed.

He also developed Bell's palsy on the left side of his face but neither of the doctors are certain whether this is a side effect of ipi or just an unfortunate coincidence. The palsy developed after the first infusion and seems to be gradually going away. He hasn't had any itching as yet.

My husband just had his third infusion. He has gotten chills a couple of times while we were sitting watching TV. This happened when he first sat down. I think his leather chair which is always cold doesn't help the feeling of coldness any. Today he mentioned that he has a very slight diarrhea problem. We'll call the doctor tomorrow as instructed.

He also developed Bell's palsy on the left side of his face but neither of the doctors are certain whether this is a side effect of ipi or just an unfortunate coincidence. The palsy developed after the first infusion and seems to be gradually going away. He hasn't had any itching as yet.

My husband just had his third infusion. He has gotten chills a couple of times while we were sitting watching TV. This happened when he first sat down. I think his leather chair which is always cold doesn't help the feeling of coldness any. Today he mentioned that he has a very slight diarrhea problem. We'll call the doctor tomorrow as instructed.

He also developed Bell's palsy on the left side of his face but neither of the doctors are certain whether this is a side effect of ipi or just an unfortunate coincidence. The palsy developed after the first infusion and seems to be gradually going away. He hasn't had any itching as yet.

Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.

I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run  together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.

susan

Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.

I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run  together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.

susan

Yes, I understand what you mean. I've had more than one Fup through the internet where what I said didn't come across as what I was trying to say. But I didn't take yours that way at all, I was just showing you another option for talking. The people on the other board are all caregivers of one kind or another and as they say there is comfort in like company. Might give you another place to talk about your fears.

I can't imagine having to go through this with such young kids, mine are all grown and long gone. It must be so hard to try to keep not only your spirits up but to not convey too much apprehension to them. As I said, we've had a good long run  together and quite honestly, at our ages one does expect it to end at some point. So I'm okay with whatever happens, good or not so much.

susan

I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were  okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.

We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.

It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks,  that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful. 

I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.

Susan

I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were  okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.

We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.

It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks,  that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful. 

I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.

Susan

I wasn't meaning to suggest you shouldn't post here. I think the more support you can find for yourself the better. I can't give you any real insight into what to expect. My husband's first melanoma appeared on his neck last March but the doctor thought he had gotten it all since nothing appeared in the lymph nodes. Following a routine chest xray in October the doctor thought he saw something in the lung so my husband went in for a PET scan, This showed that the lungs were  okay but there was a tumor in the spleen. The day after Thanksgiving he had surgery to take out his spleen. He was approved for Yervoy but is BRAF negative so the Zelboraf isn't an option. Then he had a scan which showed a tumor on his liver. He had one infusion of Yervoy at which time he developed Bell's palsy on the left side of his face. At some point he developed double vision so couldn't drive and I became the main driver. He had three infusions and then the doctor wanted a scan of his head because the Bell's didn't seem to be getting better. This showed a tumor on the left side of his brain. So the Yervoy was stopped in order for him to have gamma knife surgery on the brain tumor. He was put on steroids to stop any possible brain swelling which meant he couldn't have the fourth Yervoy infusion.

We are now waiting, next week we have appointments for a head MRI to check the brain, an appmt with the radiologist, the neurologist who did the gamma knife and an appmt with his hematologist to see if we can restart the Yervoy.

It all gets to me too, I get resentful that our lives are on hold, that he isn't able to drive, that he can't walk with me like he used to, that he is tired much of the time, that I can't understand his speech everytime he speaks,  that we aren't camping like we should be and that we aren't able to move as we wanted to. I also get impatient and realized this morning that the impatience is sometimes due to fear because of the unknown factor in all of this and because he isn't the husband I am used to. My husband is 77 years old, we've had 51 years together so we've had a good life together, but I'm not ready for it to be over and that thought overwhelms me at times. We had plans to move closer to the ocean this year and all of that is up in the air right now. I am fairly positive in outlook but try to be realistic. Melanoma is a deadly disease and not many have a full recovery or positive response despite the new treatments. But the new treatments are better than they were and that makes me hopeful. 

I hope this helps you to know that anyone who is helping and caring for a loved one who is ill feels helpless and lost at times.

Susan

Hmmm, that would not be my first guess but I'm not a doctor. Our hematologist told us that he reported it because it happened during the ipi treatment but it was the first case and he and the doctor at the Univ. of Washington thought it was probably coincidental. He also told us that the cause of Bell's isn't known. 

We're hoping for some butt kicking too!

Sus

Hmmm, that would not be my first guess but I'm not a doctor. Our hematologist told us that he reported it because it happened during the ipi treatment but it was the first case and he and the doctor at the Univ. of Washington thought it was probably coincidental. He also told us that the cause of Bell's isn't known. 

We're hoping for some butt kicking too!

Sus

Hmmm, that would not be my first guess but I'm not a doctor. Our hematologist told us that he reported it because it happened during the ipi treatment but it was the first case and he and the doctor at the Univ. of Washington thought it was probably coincidental. He also told us that the cause of Bell's isn't known. 

We're hoping for some butt kicking too!

Sus