Hey all.
I cannot tell you how much I have learned through this forum as my sisters and i have traveled the myeloma road with our 83 year old father.
We have made it through Christmas and feel the nurses and doctors were right in telling us this will be the last one. The cancer doctor came in the room last week and before saying a word hugged my sister and said he was so sorry. Our fathers numbers were not up where they had hoped, and there was no sign of improvement.
They stopped the dexamethasone. To make matters worse, he has been diagnosed with an abdominal aortic dissection and congestive heart failure. His lower limbs stay swollen even though we try to raise his legs as much as we can and the socks cause severe pain.
He stays in his room mostly now, sitting and reclining in his chair where he sleeps because when he lies in bed he feels like he cannot breath. He pees very little and has a bowel movement every couple of days at best. His appetite is all but gone and getting him to take fluids is a little tough too.
We don't take any of this personally as we believe this is part of the dying process. We have all had some pretty awesome heart to hearts with our dad and his talking about the end has become more frequent. His pain patch seems to keep the pain at bay too, which is comforting to know he isn't feeling a lot of pain.
We go back to the oncologist this Friday for another dose of Velcade and he has 4 more days on round three of Revlimid. His throat stays dry even with water sips and he looses his voice quickly when talking and his energy is sucked out of him quick when he gets up to move about with his walker, and he retreats to his wheel chair or recliner after only a few minutes on his feet.
I know this was a bit scattered but you get the point I think. Our dad is stepping down as the head of the family. Yesterday we got to do everything he wanted to do and he made it to the end with all his kids around him on Christmas day. Now we will just take it one day at a time. He said while in the rehab center "I just want to go home and die there, not here."
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8 posts
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Gdhurst61 - Name: Glenn
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Two months ago, stage III
- Age at diagnosis: 83
Re: I suppose the end is approaching
Dear Gdhurst61,
I am so sorry to hear about your father. I definitely understand how it feels when you see the hero / head of the family being so tired and weak.
The only word I would say is: Don't lose hope. Stay supporting him till the last minute. Ty to be stronger than him. Seek a second opinion if possible.
Try to spend more time and be around him. Make these moments memorable for everyone.
I am so sorry to hear about your father. I definitely understand how it feels when you see the hero / head of the family being so tired and weak.
The only word I would say is: Don't lose hope. Stay supporting him till the last minute. Ty to be stronger than him. Seek a second opinion if possible.
Try to spend more time and be around him. Make these moments memorable for everyone.
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KMZ - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 76
Re: I suppose the end is approaching
I am sorry to hear that your dad is reaching the end of his life. I lost my mom a few weeks ago after she'd had a very long time struggling with the effects of chronic fatigue syndrome and in general becoming extremely frail. She also chose to leave the hospital and die at home, and I think it was a good decision for her.
It's hard to lose a parent, but the fact that all of her kids were able to see her and talk with her over her last couple of days really helped, as did the fact that she was ready to move on from this life.
I hope there is some peace for you and your family in the way you've supported your father and the time you've had with him over this last part of his life.
It's hard to lose a parent, but the fact that all of her kids were able to see her and talk with her over her last couple of days really helped, as did the fact that she was ready to move on from this life.
I hope there is some peace for you and your family in the way you've supported your father and the time you've had with him over this last part of his life.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: I suppose the end is approaching
So, it appears there is a little fight left in the old dog. Kinda. We have transferred him to hospice care and the cancer doctor has stopped his dex and Revlimid and reduced his Velcade to once every two weeks as the numbers haven't improved in 4 months. The myeloma has paralyzed his left vocal cord and he has developed congestive heart failure. It is a struggle for him, but he hangs on even though he constantly talks about the end.
I can only go by what I see since we live with him and what his nurses say. He wants to make it to spring. Please pray that he makes it without too much discomfort. Everything is in place regarding hospice and the comfort care drugs are in the lock box.
It is interesting that this morning he didn't fight taking his pills and said he felt fine and that maybe the docs misdiagnosed his condition. (Confusion).
I post this in case there are other family members out there experiencing the journey through multiple myeloma with a parent or spouse to let them know they are not alone.
I can only go by what I see since we live with him and what his nurses say. He wants to make it to spring. Please pray that he makes it without too much discomfort. Everything is in place regarding hospice and the comfort care drugs are in the lock box.
It is interesting that this morning he didn't fight taking his pills and said he felt fine and that maybe the docs misdiagnosed his condition. (Confusion).
I post this in case there are other family members out there experiencing the journey through multiple myeloma with a parent or spouse to let them know they are not alone.
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Gdhurst61 - Name: Glenn
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Two months ago, stage III
- Age at diagnosis: 83
Re: I suppose the end is approaching
Hi Gdhurst61,
My dad (73 years old) was diagnosed with Stage 3 multiple myeloma 6 months back. He had a fracture and his kidney got affected. He had severe back ache. Initially he was critical and doctors struggled for 2 months to bring him back to normal state. He had edema, breathless, but after a regular hemodialysis and medications he is fine now. He has to take Velcade and dexamethasone combination for every 15 days (initially it was for every week). His kappa value is came down from 25000 to 400 right now. I believe it was all because of prayers.
I would say be patient and prayerful.
My dad (73 years old) was diagnosed with Stage 3 multiple myeloma 6 months back. He had a fracture and his kidney got affected. He had severe back ache. Initially he was critical and doctors struggled for 2 months to bring him back to normal state. He had edema, breathless, but after a regular hemodialysis and medications he is fine now. He has to take Velcade and dexamethasone combination for every 15 days (initially it was for every week). His kappa value is came down from 25000 to 400 right now. I believe it was all because of prayers.
I would say be patient and prayerful.
Re: I suppose the end is approaching
Thank you. We pray every day, my wife and I. Dad seems to be doing alright. It's strange. He has congestive heart failure, an aortic dissection, stage 3 multiple myeloma, and a few other things going on, including water running out of his legs like a spring which has created sores on his legs that we try and keep dry and infection free. He completely stopped all cancer treatment a month ago, and the only thing that remains is the dex, to keep his mind active they say? Keeping the calcium levels under control?
He questions whether the doctors were right or not on days when he feels good, but we, the family, know that underneath all this the cancer is free to do whatever it wants and that the regimen of pills he is taking have him in a holding pattern of sorts. He is getting so much Lasix (furosemide) that they had to add potassium to his list of pills, which seems to have helped his breathing and heart rate. We are waiting for the ball to drop, just don't know when.
My father has always been an independent, hard-working man. It is tough to see him out of energy and weak all the time as he talks about doing things we know are out of the question or beyond his ability to tolerate physically. He basically remains in his chair all day sleeping and rarely gets up unless it is to go to the bathroom or wander out into the rest of the house. He hates his life like this, but as he says, what else can I do? His quality of life is horrible, and if it weren't for his family and my living with him now, it would be unbearable. He says he wishes he could just go to sleep and not wake up.
I do my best to stay positive around him and not argue or correct him when he wanders off the fact-filled path. It's tough some days. I know others out here struggle with the same things, and I apologize for the long post, I just needed to share this. Thank you.
He questions whether the doctors were right or not on days when he feels good, but we, the family, know that underneath all this the cancer is free to do whatever it wants and that the regimen of pills he is taking have him in a holding pattern of sorts. He is getting so much Lasix (furosemide) that they had to add potassium to his list of pills, which seems to have helped his breathing and heart rate. We are waiting for the ball to drop, just don't know when.
My father has always been an independent, hard-working man. It is tough to see him out of energy and weak all the time as he talks about doing things we know are out of the question or beyond his ability to tolerate physically. He basically remains in his chair all day sleeping and rarely gets up unless it is to go to the bathroom or wander out into the rest of the house. He hates his life like this, but as he says, what else can I do? His quality of life is horrible, and if it weren't for his family and my living with him now, it would be unbearable. He says he wishes he could just go to sleep and not wake up.
I do my best to stay positive around him and not argue or correct him when he wanders off the fact-filled path. It's tough some days. I know others out here struggle with the same things, and I apologize for the long post, I just needed to share this. Thank you.
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Gdhurst61 - Name: Glenn
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Two months ago, stage III
- Age at diagnosis: 83
Re: I suppose the end is approaching
It's been a while since I have posted an update.
My father who is 84 and in stage 3 of multiple myeloma decided some time ago to stop all cancer treatment. He has many issues and the treatment was hurting him more than helping him.
At this point, we're wondering what his prognosis is.
My wife and I and my sisters all feel he has allowed this cancer to run amok in his body now, and we don't know what to expect. They had found several lesions in his skull a while ago and the treatment was having no effect on those or his numbers.
I guess since we live with him now we watch him closely to see if there are any changes. They have increased his fentanyl patch to 50 mg. His memory is getting worse at times, and his voice is weak due to the Revlimid treatment, they said, which he stopped months ago, and his voice still hasn't recovered. His muscle mass is shrinking and he gets winded easily and he is getting weaker all the time. Being on hospice care, they really don't do any type of blood work or doctor visits.
I know there are a lot of survivors out there and surely there are those that rode the storm with them. We feel every day with our dad is a blessing and a curse. A blessing because we get one more day with him, a curse because we never know if that is the last day with him. Every morning when I take him his medications and breakfast, I take a breath before I open his door just in case he is gone. He has congestive heart failure, an abdominal aortic dissection, edema where fluid drains from holes in his legs, cerebral atrophy of the right side of his brain, he is on oxygen, which he hates too. They gave him potassium to counteract the Lasix (furosemid), which rose his heart rate to 75-79 bpm (versus the 50 bpm prior to that).
I guess he is just a hot mess. There are days when he can get up and around pretty good, and then there are those when he just sits and watches TV and sleeps.
Sorry to have just rambled, but I had to share as it's hard for those not dealing with all this to understand.
Thanks all.
My father who is 84 and in stage 3 of multiple myeloma decided some time ago to stop all cancer treatment. He has many issues and the treatment was hurting him more than helping him.
At this point, we're wondering what his prognosis is.
My wife and I and my sisters all feel he has allowed this cancer to run amok in his body now, and we don't know what to expect. They had found several lesions in his skull a while ago and the treatment was having no effect on those or his numbers.
I guess since we live with him now we watch him closely to see if there are any changes. They have increased his fentanyl patch to 50 mg. His memory is getting worse at times, and his voice is weak due to the Revlimid treatment, they said, which he stopped months ago, and his voice still hasn't recovered. His muscle mass is shrinking and he gets winded easily and he is getting weaker all the time. Being on hospice care, they really don't do any type of blood work or doctor visits.
I know there are a lot of survivors out there and surely there are those that rode the storm with them. We feel every day with our dad is a blessing and a curse. A blessing because we get one more day with him, a curse because we never know if that is the last day with him. Every morning when I take him his medications and breakfast, I take a breath before I open his door just in case he is gone. He has congestive heart failure, an abdominal aortic dissection, edema where fluid drains from holes in his legs, cerebral atrophy of the right side of his brain, he is on oxygen, which he hates too. They gave him potassium to counteract the Lasix (furosemid), which rose his heart rate to 75-79 bpm (versus the 50 bpm prior to that).
I guess he is just a hot mess. There are days when he can get up and around pretty good, and then there are those when he just sits and watches TV and sleeps.
Sorry to have just rambled, but I had to share as it's hard for those not dealing with all this to understand.
Thanks all.
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Gdhurst61 - Name: Glenn
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Two months ago, stage III
- Age at diagnosis: 83
Re: I suppose the end is approaching
I am so sorry to hear of this. It's terribly difficult to have to face something like this in a loved one.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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