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Re: What do people with multiple myeloma die from?
Wow Rneb way to put it out there, no fluff. LOL I am not sure I understand every thing that you have written but get the gist of it nonetheless. Guess that is what I wanted to know, Not pretty, for sure, but real information nonetheless. Thank you for sharing. All of you ... let's just pray for a cure for this terrible disease and pray for healing in our life times. I have a lot more things I want to do ... LOL
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: What do people with multiple myeloma die from?
Y'know, speaking of 'scratching an itch ...' I thought that was an ... interesting ... way to end your post. I have multiple myeloma with the P17 deletion; makes me 'high risk,' right?
I am sick and tired of having the doctors and the support people and everybody I talk to be so constantly upbeat and Pollyannaish about all this. This disease is not, at the moment, curable. There is a good deal of hope there, a good few years ahead of me; but I find a lot more hope in reality than I do in insincere warm fuzzies.
Indeed, when my own oncologist gives me the 'I've never lost a multiple myeloma patient" and all the other stuff he comes up with, I want to HIT him. I personally do not need to be jollied along and gotten out of his hair ... and we all know that in many cases, this is what is happening when doctors and others talk to you; they don't want to deal with telling the patient the bad stuff, so they pile on a bunch of pie in the sky hokum just to get you skipping down the road away from them.
But I don't need pie in the sky. When I see something hopeful (and with all due respect to the folks who talk hope but don't really feel any, there's some real hope to be had with this disease), I want it real.
... and I want the other side 'real,' too. I, personally, want to know what's possible, either way.
It's not 'an itch' that needs 'scratching.' It's real information that I, personally, want to have so that I can file it in the 'OK, now I know that, let's go on to the next thing" file.
I am sick and tired of having the doctors and the support people and everybody I talk to be so constantly upbeat and Pollyannaish about all this. This disease is not, at the moment, curable. There is a good deal of hope there, a good few years ahead of me; but I find a lot more hope in reality than I do in insincere warm fuzzies.
Indeed, when my own oncologist gives me the 'I've never lost a multiple myeloma patient" and all the other stuff he comes up with, I want to HIT him. I personally do not need to be jollied along and gotten out of his hair ... and we all know that in many cases, this is what is happening when doctors and others talk to you; they don't want to deal with telling the patient the bad stuff, so they pile on a bunch of pie in the sky hokum just to get you skipping down the road away from them.
But I don't need pie in the sky. When I see something hopeful (and with all due respect to the folks who talk hope but don't really feel any, there's some real hope to be had with this disease), I want it real.
... and I want the other side 'real,' too. I, personally, want to know what's possible, either way.
It's not 'an itch' that needs 'scratching.' It's real information that I, personally, want to have so that I can file it in the 'OK, now I know that, let's go on to the next thing" file.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: What do people with multiple myeloma die from?
Folks;
In defense of the medical providers, they often have to deal with Morose, Depressed, anxious, dying folks (Yeah, us..) --and it's a damn hard job. Emotionally, Physically and mentally. It really takes a toll on them.
And then they have to fight Ins Co's and Big Pharma --just to take care of patients / give their patients a fighting chance. It's a tough job. There is a lot of behind the scenes action going on--mostly to help you --in your (our) Cancer journey.
Most patients don't understand the intricate process. Somedays, I question my own sanity, too.
They say making new laws is similar to making sausages. Most Cancer families don't want to know the details, or can't stomach the process of cancer. The Loss is sometimes staggering on an individual basis. Some equate it to "fighting for a seat on the lifeboat."
I believe the practice of Oncology is more similar to making new laws. Unfortunately, (or Fortunately) I have spent years "behind the curtain" professionally, studied case histories in detail, have been taught a fair amount of medicine, and have a large family in medicine. I have also done my share of Grief work and have referred a large number of people to qualified Grief Counselors. Ultimately, It is all about Loss, Denial, and acceptance. It is not an easy thing...this cancer.
Thus, I kinda know what happens and what is supposed to happen...and when. It is a Process. We all die. None of us gets out alive. Cancer or Old age--we all die. It all starts with accepting that. Some people really have trouble accepting that--usually it's the family that we leave behind. Denial.
It is certainly not a conspiracy by providers to side-step or avoid big questions, like "what are my last 2 months going to be like ?" Those are really tough questions and take time to present properly and to educate, so the patient and families understand the process, .....and don't go ape sh*t, over every little change in condition, issue, etc. ( BTW--Boris gets my kudos for this web-site--a very valuable service, indeed !)
If the Providers stopped, explained in detail what is likely happening, a couple things will predictably happen: Most patients will simply "Give up" and the chance to beat / arrest cancer will be lost; Families "will lose it" and become irate--"fix my Dad, dammit! "; ...and the Oncologists would only see about 3 patients a day. Not a good scenario,.... for everyone.
So they (Providers) side step the Denial...and do what they can. It's the life boat scenario, all over again.
But there is a proper tone providers can and should use with cancer patients--empathetic reality.
"Drive By textbook opinions" and " Pollyannish Disingenuous behaviors" have no place in this scenario--if we are all to pull together and be helpful to each other.
We have a deadly orphan disease (multiple myeloma). There are other cancers being cured, daily. Lymphoma is now about 90 % cured. ( another B cell dyscrasia), etc.( Why not MY cancer ??)
It is not Fair, I protest....however, "if you want Fair--go to a carnival"...a wise man once told me.
I hate that guy...because he is correct, ...dammit.
Good luck.
In defense of the medical providers, they often have to deal with Morose, Depressed, anxious, dying folks (Yeah, us..) --and it's a damn hard job. Emotionally, Physically and mentally. It really takes a toll on them.
And then they have to fight Ins Co's and Big Pharma --just to take care of patients / give their patients a fighting chance. It's a tough job. There is a lot of behind the scenes action going on--mostly to help you --in your (our) Cancer journey.
Most patients don't understand the intricate process. Somedays, I question my own sanity, too.
They say making new laws is similar to making sausages. Most Cancer families don't want to know the details, or can't stomach the process of cancer. The Loss is sometimes staggering on an individual basis. Some equate it to "fighting for a seat on the lifeboat."
I believe the practice of Oncology is more similar to making new laws. Unfortunately, (or Fortunately) I have spent years "behind the curtain" professionally, studied case histories in detail, have been taught a fair amount of medicine, and have a large family in medicine. I have also done my share of Grief work and have referred a large number of people to qualified Grief Counselors. Ultimately, It is all about Loss, Denial, and acceptance. It is not an easy thing...this cancer.
Thus, I kinda know what happens and what is supposed to happen...and when. It is a Process. We all die. None of us gets out alive. Cancer or Old age--we all die. It all starts with accepting that. Some people really have trouble accepting that--usually it's the family that we leave behind. Denial.
It is certainly not a conspiracy by providers to side-step or avoid big questions, like "what are my last 2 months going to be like ?" Those are really tough questions and take time to present properly and to educate, so the patient and families understand the process, .....and don't go ape sh*t, over every little change in condition, issue, etc. ( BTW--Boris gets my kudos for this web-site--a very valuable service, indeed !)
If the Providers stopped, explained in detail what is likely happening, a couple things will predictably happen: Most patients will simply "Give up" and the chance to beat / arrest cancer will be lost; Families "will lose it" and become irate--"fix my Dad, dammit! "; ...and the Oncologists would only see about 3 patients a day. Not a good scenario,.... for everyone.
So they (Providers) side step the Denial...and do what they can. It's the life boat scenario, all over again.
But there is a proper tone providers can and should use with cancer patients--empathetic reality.
"Drive By textbook opinions" and " Pollyannish Disingenuous behaviors" have no place in this scenario--if we are all to pull together and be helpful to each other.
We have a deadly orphan disease (multiple myeloma). There are other cancers being cured, daily. Lymphoma is now about 90 % cured. ( another B cell dyscrasia), etc.( Why not MY cancer ??)
It is not Fair, I protest....however, "if you want Fair--go to a carnival"...a wise man once told me.
I hate that guy...because he is correct, ...dammit.
Good luck.
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Rneb
Re: What do people with multiple myeloma die from?
I agree with Rneb about how tough that job is to be a medical professional, especially in oncology, where you will see a lot of people die. I do not know how people who work in oncology in children’s hospitals do it.
I believe it is perfectly ok and the right thing to do for care providers to be positive with patients and not give the blunt and grim details about dying unless specifically asked, and, if asked, give the straightforward and direct answers, but as professional as possible. All my care providers have done this. I only asked my oncologist once how people die from myeloma. I could tell right away he was not comfortable with this question, but he gave me a straightforward answer as best he could, then we moved on to other topics.
I think about putting myself in their positions, who would really enjoy giving the grim details to a patient and watch them get emotionally devastated right before you. I would feel like a total ass doing that and would not unless asked.
“Pollyannaish” -- I had to look that word up. I did not know there was a word for such a thing. I will have to add it to my vocabulary. I feel while it does seem to be that over positive is norm, I feel it is safer and better to be over positive with patients than the opposite. And who wants to be the Grinch?
I see that doctors are as diverse a bunch of people as the general population. Some of us are extroverts, outgoing, and have great personalities, and some are not, and most somewhere in between. I am not saying good patient interactions skills are not important, but I think we need to focus on ability and professionalism.
I believe it is perfectly ok and the right thing to do for care providers to be positive with patients and not give the blunt and grim details about dying unless specifically asked, and, if asked, give the straightforward and direct answers, but as professional as possible. All my care providers have done this. I only asked my oncologist once how people die from myeloma. I could tell right away he was not comfortable with this question, but he gave me a straightforward answer as best he could, then we moved on to other topics.
I think about putting myself in their positions, who would really enjoy giving the grim details to a patient and watch them get emotionally devastated right before you. I would feel like a total ass doing that and would not unless asked.
“Pollyannaish” -- I had to look that word up. I did not know there was a word for such a thing. I will have to add it to my vocabulary. I feel while it does seem to be that over positive is norm, I feel it is safer and better to be over positive with patients than the opposite. And who wants to be the Grinch?
I see that doctors are as diverse a bunch of people as the general population. Some of us are extroverts, outgoing, and have great personalities, and some are not, and most somewhere in between. I am not saying good patient interactions skills are not important, but I think we need to focus on ability and professionalism.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What do people with multiple myeloma die from?
My father passed away from multiple myeloma on 8th August, 2014 at the age of 76.
I had been searching for these answers since the time he was diagnosed with multiple myeloma in October 2012. As mentioned in various forums, reasons could be different, from kidney failure to secondary infections. What we experienced was very painful and different from the scattered information we got from different blogs.
Post initial diagnosis and treatment, he was cured of the disease for almost a year, and then his downfall started with remission. He again started complaining of severe pain in shoulder and upper back. Went to Emergency and suddenly started complaining of weakness in legs and inability to stand or walk. Within few hours he was declared paraplegic.
MRI test revealed tumor on the spinal cord causing compression of spinal cord which resulted in paraplegia. Was advised emergency spinal cord surgery to remove the compression, and same was done within next 24 HRS. He had to go under radiotherapy in the impacted areas after two weeks of surgery to burn out the tumor. Before we could start, he had further compression and this time his right arm muscles got weakened.
Post ten sessions of radiotherapy, was supported with physiotherapy for next three months to revive the impacted muscles. Recovery was visible as he could now walk in home with the help of support and could sit and manage his bowel control after a gap of three months.
Another month passed without an incident and in February 2014 again started complaining of pain in the pelvis area and investigations revealed tumor growth. Doctor advised another cycle of radiotherapy and in the meanwhile chemotherapy continued. Relieved of pain for a month and another instance of visible tumors and this time they were on shoulder and upper spinal cord below the neck. Was advised low dose radiotherapy, which helped temporarily.
In April 2014 blood tests reveled seriously low levels of Hb count (6.1) and was advised to give two units packed cells and post recovery of Hb was given another round of chemotherapy. Post chemo blood test revealed serious low counts of platelet (8,000) , TLC (400) and RBC.
In June 2014 within a weeks times he was given eight units of platelets, four units of packed cell and next blood test showed good recovery. Another round of chemo in end of June and blood test again revealed dangerously low levels of Hb. Another round of packed cells transfusion to boost his Hb.
Now in second week of July 2014 and blood transfusion had become a routine. Next blood test revealed further drop in platelet count (7,000) with severe pain in torso with multiple visible tumors.
Doctor refused further chemo or radiotherapy and treatment was limited to pain management. Two round of platelet transfusions and relief was temporary. In the meanwhile, he had lost all the gains made earlier and was completely confined to bed with loss of control on bowel.
August 2014 - His last week was very painful and even pain management was not helping. Started becoming disoriented and with each passing day his pain was increasing. Last two days were a nightmare due to increased pain and my father lost his will to live. Could still remember those nightmarish pain cries and could only pray to God to help him.
7th August night was advised for emergency blood test, and platelets had fallen to new dangerous low of 3000 and Hb at 6.1. Was advised for another round of platelet and packed cell transfusion for early morning. After two days, he finally slept for few hours at midnight and we were much relieved, but this did not last long. His blood pressure started falling and he passed away early morning and eternal peace was visible on his face.
I had been searching for these answers since the time he was diagnosed with multiple myeloma in October 2012. As mentioned in various forums, reasons could be different, from kidney failure to secondary infections. What we experienced was very painful and different from the scattered information we got from different blogs.
Post initial diagnosis and treatment, he was cured of the disease for almost a year, and then his downfall started with remission. He again started complaining of severe pain in shoulder and upper back. Went to Emergency and suddenly started complaining of weakness in legs and inability to stand or walk. Within few hours he was declared paraplegic.
MRI test revealed tumor on the spinal cord causing compression of spinal cord which resulted in paraplegia. Was advised emergency spinal cord surgery to remove the compression, and same was done within next 24 HRS. He had to go under radiotherapy in the impacted areas after two weeks of surgery to burn out the tumor. Before we could start, he had further compression and this time his right arm muscles got weakened.
Post ten sessions of radiotherapy, was supported with physiotherapy for next three months to revive the impacted muscles. Recovery was visible as he could now walk in home with the help of support and could sit and manage his bowel control after a gap of three months.
Another month passed without an incident and in February 2014 again started complaining of pain in the pelvis area and investigations revealed tumor growth. Doctor advised another cycle of radiotherapy and in the meanwhile chemotherapy continued. Relieved of pain for a month and another instance of visible tumors and this time they were on shoulder and upper spinal cord below the neck. Was advised low dose radiotherapy, which helped temporarily.
In April 2014 blood tests reveled seriously low levels of Hb count (6.1) and was advised to give two units packed cells and post recovery of Hb was given another round of chemotherapy. Post chemo blood test revealed serious low counts of platelet (8,000) , TLC (400) and RBC.
In June 2014 within a weeks times he was given eight units of platelets, four units of packed cell and next blood test showed good recovery. Another round of chemo in end of June and blood test again revealed dangerously low levels of Hb. Another round of packed cells transfusion to boost his Hb.
Now in second week of July 2014 and blood transfusion had become a routine. Next blood test revealed further drop in platelet count (7,000) with severe pain in torso with multiple visible tumors.
Doctor refused further chemo or radiotherapy and treatment was limited to pain management. Two round of platelet transfusions and relief was temporary. In the meanwhile, he had lost all the gains made earlier and was completely confined to bed with loss of control on bowel.
August 2014 - His last week was very painful and even pain management was not helping. Started becoming disoriented and with each passing day his pain was increasing. Last two days were a nightmare due to increased pain and my father lost his will to live. Could still remember those nightmarish pain cries and could only pray to God to help him.
7th August night was advised for emergency blood test, and platelets had fallen to new dangerous low of 3000 and Hb at 6.1. Was advised for another round of platelet and packed cell transfusion for early morning. After two days, he finally slept for few hours at midnight and we were much relieved, but this did not last long. His blood pressure started falling and he passed away early morning and eternal peace was visible on his face.
Re: What do people with multiple myeloma die from?
Hello shavik2003,
I am so sorry to hear about your father. Obviously, his time with multiple myeloma was extremely difficult for him, for you, and for the rest of your family. Thank you for sharing this information with us. It's hard for someone like me to read, wondering if I'll be going trough something similar in the future. But I'm sure it was even harder for you to write.
Best wishes to you and your family. Please accept my condolences.
Mike
I am so sorry to hear about your father. Obviously, his time with multiple myeloma was extremely difficult for him, for you, and for the rest of your family. Thank you for sharing this information with us. It's hard for someone like me to read, wondering if I'll be going trough something similar in the future. But I'm sure it was even harder for you to write.
Best wishes to you and your family. Please accept my condolences.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: What do people with multiple myeloma die from?
Dear Shavik2003,
I'm so sorry about your father's passing. It must have been very difficult for you to share this information with us here. My husband was diagnosed with multiple myeloma in 2011 and we've been married for 40 years now. I try not to mentally "fast forward" to what the future might hold for him (and me) someday, but once in a while I do take a look, to help me be more prepared to help him at that point and not fall apart then for his sake.
I'm glad your father's been released from his pain and hope you can find comfort by remembering better times you had with him before the multiple myeloma.
My sincere sympathy goes out to you and your family.
Chris M.
I'm so sorry about your father's passing. It must have been very difficult for you to share this information with us here. My husband was diagnosed with multiple myeloma in 2011 and we've been married for 40 years now. I try not to mentally "fast forward" to what the future might hold for him (and me) someday, but once in a while I do take a look, to help me be more prepared to help him at that point and not fall apart then for his sake.
I'm glad your father's been released from his pain and hope you can find comfort by remembering better times you had with him before the multiple myeloma.
My sincere sympathy goes out to you and your family.
Chris M.
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Chris M.
Re: What do people with multiple myeloma die from?
My mother passed away August 3, 2014 months after being diagnosed with stage III multiple myeloma. Cause of death: hypoxemic respiratory failure, pneumonia, acute kidney failure and multiple myeloma. She stopped chemo for a time to try and get stronger. She felt better without the chemo, but her body was tired. She took her last breath at 3:30 am at the local hospital.
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sandy57
Re: What do people with multiple myeloma die from?
Sandy, I am so very sorry for your loss.
Shavik2003, I am also very sorry for your loss.
Like others, it is hard to read but I like to know whats ahead of me. Although reading & talking to people, you still really do not know what the end will be like because everyone seems to be so different.
Thank you everyone for sharing.
Shavik2003, I am also very sorry for your loss.
Like others, it is hard to read but I like to know whats ahead of me. Although reading & talking to people, you still really do not know what the end will be like because everyone seems to be so different.
Thank you everyone for sharing.
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: What do people with multiple myeloma die from?
Terri:
Does this ( your moniker) mean you have a 5th Year Anniversary to celebrate ??
If so, I'd celebrate that, rather than the end ....that may be " a ways down the road".
Congrats on 5 years.
Good luck.
Does this ( your moniker) mean you have a 5th Year Anniversary to celebrate ??
If so, I'd celebrate that, rather than the end ....that may be " a ways down the road".
Congrats on 5 years.
Good luck.
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Rneb