Hi All,
So glad I found this forum. My 66 year old father was recently diagnosed with multiple myeloma. We found it after having to beg doctors to look further into his problem I why he had spinal fractures and has been in severe pain unable to walk for months.
We are waiting on the biopsy. All they will tell us is it is stage III.
Can anyone give me any advice as to what is to come and what the prognosis is for this. I'd never heard of this before.
Are there mulitiple types of variations of multiple myeloma that get treated differently. Since it is in his spine will they likely give him an aggressive chemo to hopefully kill the cells or is that just not an option with this type of cancer.
Also we are looking at having spinal "cement" injections to help his back and get him mobile again. Anyone else have experience with this and was it successful.
Any help is appreciated. The waiting and not knowing phase is awful!
Thanks,
T in florida
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Re: Dad recently diagnosed - looking for info
Hi floridagirl,
So sorry to hear what you father is going through right now. It was hard for us to get a clear picture of prognosis (and even now 3.5 mos since my own diagnosis) it's not very clear because there is so much in new treatments and drugs for multiple myeloma...so the stats that we have don't exactly reflect the options that are coming available.
I hit stage III as well...collapsed vertebrae and fractures...near kidney failure. After biopsy, they began treatment of chemo for me even before I left hospital...but they had to make sure that my organs would be able to handle it...especially kidneys as they take a pretty hard hit from the disease. If all goes well, they hopefully will start chemo and then zometa (for bones)...and will hopefully kill some cancer cells, normalize his numbers, and lessen his pain...and then look down the line to see if a stem cell transplant(s) is in order...lots of different experiences you will find that people have with multiple myeloma treatment. The cement procedure is called kyphoplasty and many here have praised it...I haven't had the procedure as I have to get through my stem cell transplants first...but others got it done right away.
Here is a very informative page on multiple myeloma...has info in disease, on staging, median survival rates, treatments, and questions to ask the care team:
http://www.cancer.org/acs/groups/cid/documents/webcontent/003065-pdf.pdf
Hope this was of any help.
So sorry to hear what you father is going through right now. It was hard for us to get a clear picture of prognosis (and even now 3.5 mos since my own diagnosis) it's not very clear because there is so much in new treatments and drugs for multiple myeloma...so the stats that we have don't exactly reflect the options that are coming available.
I hit stage III as well...collapsed vertebrae and fractures...near kidney failure. After biopsy, they began treatment of chemo for me even before I left hospital...but they had to make sure that my organs would be able to handle it...especially kidneys as they take a pretty hard hit from the disease. If all goes well, they hopefully will start chemo and then zometa (for bones)...and will hopefully kill some cancer cells, normalize his numbers, and lessen his pain...and then look down the line to see if a stem cell transplant(s) is in order...lots of different experiences you will find that people have with multiple myeloma treatment. The cement procedure is called kyphoplasty and many here have praised it...I haven't had the procedure as I have to get through my stem cell transplants first...but others got it done right away.
Here is a very informative page on multiple myeloma...has info in disease, on staging, median survival rates, treatments, and questions to ask the care team:
http://www.cancer.org/acs/groups/cid/documents/webcontent/003065-pdf.pdf
Hope this was of any help.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Dad recently diagnosed - looking for info
Thank you so much for the reply. Hugely helpful. I've been reading a lot of posts on here about kidney failure. Wondering why this disease affects kidneys? What symptoms to look for regarding that?
Re: Dad recently diagnosed - looking for info
From what I understand, kidneys suffer because of the myeloma doing its thing plus eroding the bones...lots of calcium and protein running in the blood and just taxes the kidneys. That's what alerted docs that something was amiss in my case...an increase of creatinine levels in blood which basically is a measure of kidney function...if your father has been diagnosed multiple myeloma...I am sure they already know what level his kidneys are at. Luckily my kidneys bounced back quickly...but others' do not sometimes...but again not everyone has same symptoms.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Dad recently diagnosed - looking for info
Despite the damage done to the bones, there are several things that can be done to help. The "cement" procedure is kyphoplasty and this can help tremendously with pain. There are also bone strengthening medications (Aredia or Zometa) that can help prevent further fractures.
The treatment of myeloma is very effective and treatment will likely prevent further bone damage.
Regarding the kidney: There are several ways in which the protein (immunoglobulin or light chain) can affect the kidney. Probably too much to get into in this setting. But the easiest way to describe it is that excess immunoglobulin or light chain in the urine can crystallize in the kidney damaging the kidney tubules or filter function of the kidney.
The treatment of myeloma is very effective and treatment will likely prevent further bone damage.
Regarding the kidney: There are several ways in which the protein (immunoglobulin or light chain) can affect the kidney. Probably too much to get into in this setting. But the easiest way to describe it is that excess immunoglobulin or light chain in the urine can crystallize in the kidney damaging the kidney tubules or filter function of the kidney.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Dad recently diagnosed - looking for info
Thank you all for the responses to my post, so grateful for all of you taking the time to respond.
Someone sent a link indicating that survival rates for stage III MMM was about 26 months.
Please tell me this is an out of date statistic and there are new treatments to prolong this?
Someone sent a link indicating that survival rates for stage III MMM was about 26 months.
Please tell me this is an out of date statistic and there are new treatments to prolong this?
Re: Dad recently diagnosed - looking for info
Hi Floridagirl,
Survival for myeloma patients diagnosed right now will definitely be better than what you'll find even in the most up-to-date statistics, because the statistics are always historical, and myeloma treatments are constantly improving.
On top of that, you have to remember that most survival statistics you'll read are "medians" -- meaning that 50 percent of the patients in whatever category you're looking at had better survival than that number (and 50 percent had worse).
In other words, every case is different.
If you really want to understand the latest numbers on myeloma survival, you should review these two recent Beacon articles,
Survival Of Multiple Myeloma Patients Significantly Increases Over Last Decade
and
Multiple Myeloma Survival Increased Significantly The Past 15 Years, But Unevenly Across Ethnic And Age Groups
Also, you should understand that the stage of a person's myeloma is not the most critical factor affecting how aggressive the person's disease is (and therefore their expected survival). Instead, myeloma specialists assess the aggressiveness of a patient's disease based on whether it is considered "high risk", "standard risk", or "low risk" based on the definitions described in this article:
Experts Publish Consensus Risk Classification For Multiple Myeloma
Note, though, that the survival estimates mentioned in the above article are probably pessimistic -- especially for patients classified as having high-risk disease.
Good luck!
Survival for myeloma patients diagnosed right now will definitely be better than what you'll find even in the most up-to-date statistics, because the statistics are always historical, and myeloma treatments are constantly improving.
On top of that, you have to remember that most survival statistics you'll read are "medians" -- meaning that 50 percent of the patients in whatever category you're looking at had better survival than that number (and 50 percent had worse).
In other words, every case is different.
If you really want to understand the latest numbers on myeloma survival, you should review these two recent Beacon articles,
Survival Of Multiple Myeloma Patients Significantly Increases Over Last Decade
and
Multiple Myeloma Survival Increased Significantly The Past 15 Years, But Unevenly Across Ethnic And Age Groups
Also, you should understand that the stage of a person's myeloma is not the most critical factor affecting how aggressive the person's disease is (and therefore their expected survival). Instead, myeloma specialists assess the aggressiveness of a patient's disease based on whether it is considered "high risk", "standard risk", or "low risk" based on the definitions described in this article:
Experts Publish Consensus Risk Classification For Multiple Myeloma
Note, though, that the survival estimates mentioned in the above article are probably pessimistic -- especially for patients classified as having high-risk disease.
Good luck!
Re: Dad recently diagnosed - looking for info
Makes sense, thank you for the response.
So I guess my last question is, should we be looking for an oncologist that specializes in multiple myeloma? Are there onco's the specialize in this in most major metropolitain areas?
I callled the largest oncologist group in our town...and they are quite large, and was told none of the oncologist specialize in anything, that they all treat everything and will refer you if they think necessary. We are also fairly close to Moffitt Cancer Center in Tampa which we will be getting a second opinion at...but just wanted to know if general onco is good or look for a specialist in this?
So I guess my last question is, should we be looking for an oncologist that specializes in multiple myeloma? Are there onco's the specialize in this in most major metropolitain areas?
I callled the largest oncologist group in our town...and they are quite large, and was told none of the oncologist specialize in anything, that they all treat everything and will refer you if they think necessary. We are also fairly close to Moffitt Cancer Center in Tampa which we will be getting a second opinion at...but just wanted to know if general onco is good or look for a specialist in this?
Re: Dad recently diagnosed - looking for info
Most definitely, Floridagirl! Get dad to Moffit! That is not a question upon which to hesitate ... get to Moffitt and you'll be amazed at the additional insight a multiple myeloma specialist can provide.
Myeloma Beacon columnist Pat Killingsworth has been treated at Moffitt for a number of years, as has Beacon columnist Dr. Arnie Goodman (as I understand it).
Best,
Steve
Myeloma Beacon columnist Pat Killingsworth has been treated at Moffitt for a number of years, as has Beacon columnist Dr. Arnie Goodman (as I understand it).
Best,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Dad recently diagnosed - looking for info
Hi floridagirl. No, no, no, please don't believe those statistics!! Those old stats are based on an older population and less effective drugs than we have now.
I was diagnosed with Stage 3 in 2009, when I was in my early 50s. I saw those stats, too, and they freaked me out, but the newer stats show that with the newer drugs, myeloma patients are living much longer. As pointed out, we are now learning about genetics and the role chromosomal changes play in prognosis.
Besides age at time of diagnosis, one difference between me and your dad is that I didn't have damage to my spine. Most of my damage is in my ribs, although I'm now developing arthritis symptoms in my neck area. I'm so un-excited by it.
Also, I had the beginnings of kidney damage. I had become hypercalcemic and ended up in the hospital. After flushing the extra calcium out of my system, my kidney function reverted to normal. I now make sure I drink plenty of fluid and move around during the day to prevent that from happening again.
Good luck and let us know how he is doing.
Dana
I was diagnosed with Stage 3 in 2009, when I was in my early 50s. I saw those stats, too, and they freaked me out, but the newer stats show that with the newer drugs, myeloma patients are living much longer. As pointed out, we are now learning about genetics and the role chromosomal changes play in prognosis.
Besides age at time of diagnosis, one difference between me and your dad is that I didn't have damage to my spine. Most of my damage is in my ribs, although I'm now developing arthritis symptoms in my neck area. I'm so un-excited by it.
Also, I had the beginnings of kidney damage. I had become hypercalcemic and ended up in the hospital. After flushing the extra calcium out of my system, my kidney function reverted to normal. I now make sure I drink plenty of fluid and move around during the day to prevent that from happening again.
Good luck and let us know how he is doing.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
10 posts
• Page 1 of 1