My father has been diagnosed with multiple myeloma about a month ago. His plasma cells are only 3 percent, but he has 4 tumors. He also has diabetes type 2 and just finished his second treatment of chemo. His sugar keeps shooting up and he has chest pains the other night.
With the low plasma count and healthy kidneys, etc, I assumed he will be around a while. I am worried that his other health issues are going to end him up in hospital before the cancer gets him.
Does this happen often? Is the prognosis worse for multiple myeloma if there are other conditions such as diabetes?
His doctor says he is 'low risk' right now in terms of the cancer, but he has other health issues. He fractured his hip a year ago and has a cytoplasm on his brain skull, 2 on spine, one on shoulder.
How can it be 'low risk' if he is having so many issues?
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Re: Prognosis with pre-existing health problems?
This is an excellent question and an issue that is further being recognized by myeloma physicians and researchers. Typically, when your physician discusses risk, they are focusing on features of the myeloma. Low or standard risk means that there is no evidence of high risk features like certain cytogenetic abnormalities, plasmacytomas outside of the bones, kidney failure and high stage. And it appears that your father does not have any of the features. And that is good news.
And you are correct that other health concerns are important. We are more frequently assessing an individual patient's overall health. We are factoring in age, comorbidities (other non-myeloma related illness: heart, lung and liver disease), performance status (how active they are), and functional status (how much can they do; get dressed on their own, cook, drive, do bills and the like.) We now know from a risk perspective that these issues are important also in understanding outcomes for patients with myeloma.
I hope this helps answer your question and concern. I wish you and your father the best.
Jlk
And you are correct that other health concerns are important. We are more frequently assessing an individual patient's overall health. We are factoring in age, comorbidities (other non-myeloma related illness: heart, lung and liver disease), performance status (how active they are), and functional status (how much can they do; get dressed on their own, cook, drive, do bills and the like.) We now know from a risk perspective that these issues are important also in understanding outcomes for patients with myeloma.
I hope this helps answer your question and concern. I wish you and your father the best.
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Prognosis with pre-existing health problems?
Hi Pootren,
Dr. Kaufman suggested to us that we might also want to share with you information about this presentation that was made at last year's American Society of Hematology meeting,
A Larocca et al., "A Simple Score, Based On Geriatric Assessment, Improves Prediction of Survival, and Risk Of Serious Adverse Events In Elderly Newly Diagnosed Multiple Myeloma Patients," ASH 2013 abstract 687 (presentation slides).
The abstract summarizes some of the work that is being done to understand how aspects of a person's health separate from their multiple myeloma can affect their prognosis, and could also be used to develop better approaches to treating patients.
The International Myeloma Working Group, for example, is working on therapy guidelines that take into account research such as that summarized in the above abstract (this is mentioned in this recent Beacon article; see point #3 in the article).
We hope your mother responds well to her treatment. Please keep us posted on how she is doing and share with us anything you learn along the way.
Dr. Kaufman suggested to us that we might also want to share with you information about this presentation that was made at last year's American Society of Hematology meeting,
A Larocca et al., "A Simple Score, Based On Geriatric Assessment, Improves Prediction of Survival, and Risk Of Serious Adverse Events In Elderly Newly Diagnosed Multiple Myeloma Patients," ASH 2013 abstract 687 (presentation slides).
The abstract summarizes some of the work that is being done to understand how aspects of a person's health separate from their multiple myeloma can affect their prognosis, and could also be used to develop better approaches to treating patients.
The International Myeloma Working Group, for example, is working on therapy guidelines that take into account research such as that summarized in the above abstract (this is mentioned in this recent Beacon article; see point #3 in the article).
We hope your mother responds well to her treatment. Please keep us posted on how she is doing and share with us anything you learn along the way.
Re: Prognosis with pre-existing health problems?
Dear Pootren,
My husband was diagnosed with frontotemporal dementia, and primary progressive aphasia, back in 2008. Coming to grips with the memory, speech, and cognitive difficulties has been quite challenging over these six years. Progression has been slow, but steady. He no longer is employed, drives, or performs any executive functions, like keeping the checkbook, making major financial decisions, or golfing, to name a few. He retired 4 years ago, and we moved closer to our children.
What a surprise it was in January of 2014 when he was diagnosed with multiple myeloma! Kudos to our PCP for not giving up. We were referred to an oncologist, and he has been receiving weekly treatments of Velcade, along with the steroids Decadron and Aloxi, with a monthly injection of Zometa for his bones. My husband has tolerated this two week on, one week off regimen extremely well, with minimal side effects. The abnormal protein has decreased from 3.78 to 0.44, as of a month ago.
I've often wondered how many other people have multiple illnesses at the time of the multiple myeloma diagnosis. I would be interested in the comments from others who are "in our boat." We take one day at a time, and try to live each day to the fullest. But it is still tiring and challenging for us both.
We have a deep faith, and trust that God is walking beside us along this journey. We also believe in the power of prayer.
Seeing the cup always half full,
NC Pam
My husband was diagnosed with frontotemporal dementia, and primary progressive aphasia, back in 2008. Coming to grips with the memory, speech, and cognitive difficulties has been quite challenging over these six years. Progression has been slow, but steady. He no longer is employed, drives, or performs any executive functions, like keeping the checkbook, making major financial decisions, or golfing, to name a few. He retired 4 years ago, and we moved closer to our children.
What a surprise it was in January of 2014 when he was diagnosed with multiple myeloma! Kudos to our PCP for not giving up. We were referred to an oncologist, and he has been receiving weekly treatments of Velcade, along with the steroids Decadron and Aloxi, with a monthly injection of Zometa for his bones. My husband has tolerated this two week on, one week off regimen extremely well, with minimal side effects. The abnormal protein has decreased from 3.78 to 0.44, as of a month ago.
I've often wondered how many other people have multiple illnesses at the time of the multiple myeloma diagnosis. I would be interested in the comments from others who are "in our boat." We take one day at a time, and try to live each day to the fullest. But it is still tiring and challenging for us both.
We have a deep faith, and trust that God is walking beside us along this journey. We also believe in the power of prayer.
Seeing the cup always half full,
NC Pam
Re: Prognosis with pre-existing health problems?
My apologies!
I misread the question. I have no idea how the multiple myeloma diagnosis will affect the progression of his dementia. The type of dementia, along with the aphasia, is a slow moving Mack truck! Changes occur slowly over time, depending on what part of the brain is involved and when.
His oncologist frequently speaks of maintaining a good "quality of life". Even though he was at the right age for a stem cell transplant, we opted not to, taking into account his dementia. He's 67, and I want him to enjoy the time he has left. Hence, we've just returned from a wonderful and exciting cruise down the Danube, celebrating our 44th anniversary. We both enjoyed ourselves very much.
Sometimes you just have to take a bite out of life, before it takes a hold of you, and HAVE FUN! None of us know what our future holds.
Just my thoughts --
NC Pam
I misread the question. I have no idea how the multiple myeloma diagnosis will affect the progression of his dementia. The type of dementia, along with the aphasia, is a slow moving Mack truck! Changes occur slowly over time, depending on what part of the brain is involved and when.
His oncologist frequently speaks of maintaining a good "quality of life". Even though he was at the right age for a stem cell transplant, we opted not to, taking into account his dementia. He's 67, and I want him to enjoy the time he has left. Hence, we've just returned from a wonderful and exciting cruise down the Danube, celebrating our 44th anniversary. We both enjoyed ourselves very much.
Sometimes you just have to take a bite out of life, before it takes a hold of you, and HAVE FUN! None of us know what our future holds.
Just my thoughts --
NC Pam
Re: Prognosis with pre-existing health problems?
My husband had many existing health problems prior to diagnosis with myeloma.
In 2011, he died for a short bit, 25 minutes of CPR followed his cardiac arrest. He had no previously diagnosed health problems. CPR resulted in an anoxic brain injury, and after hypothermia treatment he was hospitalized for almost 40 days. He was a mess. Spent some time in a minimally conscious state. Was considered a candidate for life long commitment. I had trouble believing that, and I took him home. Took him off some heavy anti-psychotics and he recovered fine. Or almost.
Lots of speech therapy. Social Security decided his brain was injured enough to allow for disability. 9 months later and many other problems later, he needed open heart surgery. Very tough recovery for him. Repeated sternal infections in his incision. In April of 2012, they decided to remove the sternal wires, hoping that would stop the infections. Life then became HARD. Confusion, hallucinations, paranoia, delusions. If it was on the mental health spectrum, we had it.
After a horrible stay in a psychiatric unit, he was transferred to the University of Iowa's medical psychiatric unit. they diagnosed him with delirium and multiple myeloma. It is thought that the myeloma and pre-existing brain injury caused the delirium. Four weeks of chemo later, the delirium was gone. Of course, we lost almost 4 months of life at that point. To tell you how severe the delirum was, I was also unable to work for those 4 months, it was a horrible time.
After 16 weeks of chemo, we started working with the Mayo Clinic toward a transplant. Unfortunately, after 3 trips to Mayo, he was diagnosed with heart failure, with Velcade as the suspected cause. That sounds horrible. But a combination of Velcade and Cytoxan put him in remission, so we can't hate the Velcade treatment too much.
Currently dealing with 4 broken ribs from a fall, and needing 4 stents to his heart. But kidney function is not good enough yet to proceed.
So, what is his prognosis? He was diagnosed as stage 2. Remission has been good for almost a year. So who knows? My husband thinks the heart will kill him first. I think only time will tell.
It's been a very tough 3 years. I don't think I want a prognosis at this point.
In 2011, he died for a short bit, 25 minutes of CPR followed his cardiac arrest. He had no previously diagnosed health problems. CPR resulted in an anoxic brain injury, and after hypothermia treatment he was hospitalized for almost 40 days. He was a mess. Spent some time in a minimally conscious state. Was considered a candidate for life long commitment. I had trouble believing that, and I took him home. Took him off some heavy anti-psychotics and he recovered fine. Or almost.
Lots of speech therapy. Social Security decided his brain was injured enough to allow for disability. 9 months later and many other problems later, he needed open heart surgery. Very tough recovery for him. Repeated sternal infections in his incision. In April of 2012, they decided to remove the sternal wires, hoping that would stop the infections. Life then became HARD. Confusion, hallucinations, paranoia, delusions. If it was on the mental health spectrum, we had it.
After a horrible stay in a psychiatric unit, he was transferred to the University of Iowa's medical psychiatric unit. they diagnosed him with delirium and multiple myeloma. It is thought that the myeloma and pre-existing brain injury caused the delirium. Four weeks of chemo later, the delirium was gone. Of course, we lost almost 4 months of life at that point. To tell you how severe the delirum was, I was also unable to work for those 4 months, it was a horrible time.
After 16 weeks of chemo, we started working with the Mayo Clinic toward a transplant. Unfortunately, after 3 trips to Mayo, he was diagnosed with heart failure, with Velcade as the suspected cause. That sounds horrible. But a combination of Velcade and Cytoxan put him in remission, so we can't hate the Velcade treatment too much.
Currently dealing with 4 broken ribs from a fall, and needing 4 stents to his heart. But kidney function is not good enough yet to proceed.
So, what is his prognosis? He was diagnosed as stage 2. Remission has been good for almost a year. So who knows? My husband thinks the heart will kill him first. I think only time will tell.
It's been a very tough 3 years. I don't think I want a prognosis at this point.
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