Hi everyone, I'm new here. Just recently, my husband got not-so-good CT scan results - lytic lesions all over his skeleton. Doctors said they're almost 100% certain it's multiple myeloma, but we're still waiting for all other results and final diagnosis. All we have at this moment are X ray images and general blood and urine test results, which are not the best ever, but I think they're not the worst either - high sedimentation, creatinine, proteins, and B2M.
He made a wise choice not to google, but I couldn't resist and ... I'm terrified. Every single article is talking about 5 years max, terrible chemo therapies, and no way out. I don't even know what I'm looking for here, and sorry if I'm in wrong place, but I could really use some nice words to get me through this waiting period.
Forums
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Is multiple myeloma really that bad?
Good morning Maya:
I am sorry for you husband's issues, and good look with finalizing the diagnosis and starting the treatment. As many other posters on the forum will point out, the forum is useful for education, but some input needs to come from the qualified doctor. There is no way I could guess as to how hard his situation will be at this point. And it's important to get a myeloma specialist.
I can advise a couple of things, however. One of the best resources in understanding the myeloma basics is the Mayo Clinic's Msmart guidelines. Here is the link for the main page:
http://www.msmart.org/
Multiple myeloma is very complex – it differs tremendously in effect from person to person, and evolves in a person over time. The Msmart guidelines, however, do capture the first level of issues that a patient, his/her relative / caregiver can understand to get a handle of what they are up against.
The second thing that I can tell you is that the standard treatments in the U.S. are called "novel" agents. They were developed within about the last ten years, and have only come in to widespread use in the last five years. They work better then the older treatments. They are definitely an improvement over the older drugs. So the actual expectation for progression-free survival (PFS) and overall survival (OS) is somewhat better as compared with a study that was published 3, 4, or 5 years ago that you might have read after popping up on a Google search. There are very few studies that have actually been completed with good data on OS using the best novel agents, simply because they are relatively new and not enough time has passed.
And there are newer promising drugs / treatments in the pipeline. Some of these new classes of treatment (immunotherapy, various inhibitors, and monoclonal antibodies) will very probably ultimately result in newer mixtures of drugs (cocktails) that might work better, and with lesser side effects. As you get into your husband's diagnosis and treatment plan, you could look at possibly clinical trials to see if you could incorporate some of these newer drugs into the initial treatment.
Good luck to you and your family.
JPC
I am sorry for you husband's issues, and good look with finalizing the diagnosis and starting the treatment. As many other posters on the forum will point out, the forum is useful for education, but some input needs to come from the qualified doctor. There is no way I could guess as to how hard his situation will be at this point. And it's important to get a myeloma specialist.
I can advise a couple of things, however. One of the best resources in understanding the myeloma basics is the Mayo Clinic's Msmart guidelines. Here is the link for the main page:
http://www.msmart.org/
Multiple myeloma is very complex – it differs tremendously in effect from person to person, and evolves in a person over time. The Msmart guidelines, however, do capture the first level of issues that a patient, his/her relative / caregiver can understand to get a handle of what they are up against.
The second thing that I can tell you is that the standard treatments in the U.S. are called "novel" agents. They were developed within about the last ten years, and have only come in to widespread use in the last five years. They work better then the older treatments. They are definitely an improvement over the older drugs. So the actual expectation for progression-free survival (PFS) and overall survival (OS) is somewhat better as compared with a study that was published 3, 4, or 5 years ago that you might have read after popping up on a Google search. There are very few studies that have actually been completed with good data on OS using the best novel agents, simply because they are relatively new and not enough time has passed.
And there are newer promising drugs / treatments in the pipeline. Some of these new classes of treatment (immunotherapy, various inhibitors, and monoclonal antibodies) will very probably ultimately result in newer mixtures of drugs (cocktails) that might work better, and with lesser side effects. As you get into your husband's diagnosis and treatment plan, you could look at possibly clinical trials to see if you could incorporate some of these newer drugs into the initial treatment.
Good luck to you and your family.
JPC
-
JPC - Name: JPC
Re: Is multiple myeloma really that bad?
Maya-
JPC has given you some good information. The first thing is to not to panic at this point since you don't really know what your husband's diagnosis may be and, if myeloma, what type of treatment would be recommended. I know that's hard for you to do right now since you have gone to the internet to read about myeloma.
A really important thing to note when you read Internet articles about myeloma, or other diseases, is when the information was written. If it is more than 2-3 years old, then it is really out of date. So much is happening in the world of myeloma that treatment strategies, definitions and new drugs that are coming that things are changing rapidly. There is a lot of research being done in the field of myeloma and other blood cancers that it is a hot topic. Survival statistics tend to be lower than what many of us are seeing and experiencing. We tend to be living fairly good lives working, playing, watching our families grow, etc. There are a few people in my support group who have been living with myeloma for 20+ years.
So, although it is an incurable cancer, it usually can be managed with fairly good quality of life. Unfortunately, there are also those who don't live very long after their diagnosis. One thing you will learn is that each person's myeloma reacts very differently to treatment no matter what risk category a person falls into based on genetic markers in the myeloma cells.
In addition to Mayo's publications on myeloma, Dana Farber's are very good. Also, if your husband does receive a diagnosis of myeloma, you may want to seek out a support group in your area. If if there isn't a myeloma support group in your area, but likely will have a blood cancer support group. There also tend to be a good number of caregiver support groups that you might find helpful because that is a very important and stressful job.
If your husband is diagnosed with myeloma, I would suggest that you get a second opinion from a myeloma specialist. They are usually found in large, hospital based cancer centers that are also major research centers. They are located throughout the country, but depending on where you live you may have to travel to go to one. Most myeloma specialists will coordinate care with a local oncologist if the specialty center is a distance from where you live. You would not have to go to the specialist on a regular basis like you would with the local oncologist - 1-2 times a year if things are stable.
One last thing, bone lesions throughout the body don't have to be considered a problem unless they are symptomatic leading to pain and/or fractures. I have multiple ones and have only had problems with 2 in the 7 years since I was diagnosed. I had a fracture in one that led to my myeloma being progressed in diagnosis from smoldering to active and requiring me to begin treatment. The other one became quite painful and was treated with a short course of radiation which helped immensely.
I lied. One other thing, the drugs that most of us are taking for myeloma are relatively side effect free. They aren't like the traditional chemotherapies that you have heard about for solid tumors.
Do your research, ask questions of us on the forum and of the doctors who your husband sees, and try not to panic. Your husband may be around with minimal problems from the myeloma for many years to come.
Nancy in Phila
JPC has given you some good information. The first thing is to not to panic at this point since you don't really know what your husband's diagnosis may be and, if myeloma, what type of treatment would be recommended. I know that's hard for you to do right now since you have gone to the internet to read about myeloma.
A really important thing to note when you read Internet articles about myeloma, or other diseases, is when the information was written. If it is more than 2-3 years old, then it is really out of date. So much is happening in the world of myeloma that treatment strategies, definitions and new drugs that are coming that things are changing rapidly. There is a lot of research being done in the field of myeloma and other blood cancers that it is a hot topic. Survival statistics tend to be lower than what many of us are seeing and experiencing. We tend to be living fairly good lives working, playing, watching our families grow, etc. There are a few people in my support group who have been living with myeloma for 20+ years.
So, although it is an incurable cancer, it usually can be managed with fairly good quality of life. Unfortunately, there are also those who don't live very long after their diagnosis. One thing you will learn is that each person's myeloma reacts very differently to treatment no matter what risk category a person falls into based on genetic markers in the myeloma cells.
In addition to Mayo's publications on myeloma, Dana Farber's are very good. Also, if your husband does receive a diagnosis of myeloma, you may want to seek out a support group in your area. If if there isn't a myeloma support group in your area, but likely will have a blood cancer support group. There also tend to be a good number of caregiver support groups that you might find helpful because that is a very important and stressful job.
If your husband is diagnosed with myeloma, I would suggest that you get a second opinion from a myeloma specialist. They are usually found in large, hospital based cancer centers that are also major research centers. They are located throughout the country, but depending on where you live you may have to travel to go to one. Most myeloma specialists will coordinate care with a local oncologist if the specialty center is a distance from where you live. You would not have to go to the specialist on a regular basis like you would with the local oncologist - 1-2 times a year if things are stable.
One last thing, bone lesions throughout the body don't have to be considered a problem unless they are symptomatic leading to pain and/or fractures. I have multiple ones and have only had problems with 2 in the 7 years since I was diagnosed. I had a fracture in one that led to my myeloma being progressed in diagnosis from smoldering to active and requiring me to begin treatment. The other one became quite painful and was treated with a short course of radiation which helped immensely.
I lied. One other thing, the drugs that most of us are taking for myeloma are relatively side effect free. They aren't like the traditional chemotherapies that you have heard about for solid tumors.
Do your research, ask questions of us on the forum and of the doctors who your husband sees, and try not to panic. Your husband may be around with minimal problems from the myeloma for many years to come.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Is multiple myeloma really that bad?
Hi, Maya.
Every patient is different, whether to 'google' or not to 'google.' Me, I'm the "google with a barrel of salt" type, but then I do Internet research a lot, and I've been inoculated against the idiots, the scams and the twerps, as well as the scary stuff.
While it is true that "not everything on the internet is true," it's ALSO true that you can find the right information on the internet, as well, if you know where to go. And you, m'dear, have come to the right place to find information about multiple myeloma. We have experts here and many wise patients who have "been there / done that / still going strong."
You have been advised to get a second opinion if it turns out to be multiple myeloma, and you have been advised to find, if you can, a multiple myeloma specialist. That's GREAT advice. Also, find someone who will actually talk to you.
The journey into multiple myeloma can be scary ... and unpleasant at the beginning, but really, what you have read here so far is true; there is a huge amount of hope here, with people living good, long lives in remission with a truly enjoyable quality of life.
Don't panic. It is scary, but for the last few years? That light at the end of the tunnel isn't, after all, the oncoming freight train.
Every patient is different, whether to 'google' or not to 'google.' Me, I'm the "google with a barrel of salt" type, but then I do Internet research a lot, and I've been inoculated against the idiots, the scams and the twerps, as well as the scary stuff.
While it is true that "not everything on the internet is true," it's ALSO true that you can find the right information on the internet, as well, if you know where to go. And you, m'dear, have come to the right place to find information about multiple myeloma. We have experts here and many wise patients who have "been there / done that / still going strong."
You have been advised to get a second opinion if it turns out to be multiple myeloma, and you have been advised to find, if you can, a multiple myeloma specialist. That's GREAT advice. Also, find someone who will actually talk to you.
The journey into multiple myeloma can be scary ... and unpleasant at the beginning, but really, what you have read here so far is true; there is a huge amount of hope here, with people living good, long lives in remission with a truly enjoyable quality of life.
Don't panic. It is scary, but for the last few years? That light at the end of the tunnel isn't, after all, the oncoming freight train.
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Is multiple myeloma really that bad?
I am fairly new to the myeloma world; my husband was diagnosed in May, 2015. This forum is fantastic. The people are so informed on myeloma. Doctors also respond. Anytime I have questions on things, I search the forums - not to make decisions, but to get data points for consideration.
They will tell you this disease is very individualized, so they will never give a "prognosis." There is a lot of hope for a sustained life, if not a cure.
They will tell you this disease is very individualized, so they will never give a "prognosis." There is a lot of hope for a sustained life, if not a cure.
Re: Is multiple myeloma really that bad?
Hi Maya,
I would just like to second what others have said about the importance of seeking out a myeloma specialist. If you post information about your location, I'm sure you will get some helpful responses regarding good treatment centers. I think most specialists will work with your local oncologist to devise and supervise a treatment plan for your husband if you so desire.
As Nancy pointed out, many—maybe most—of us are living happy, productive lives. I am doing everything I did before my diagnosis—working, "playing," exercising, etc. Although I don't want to minimize what others may be experiencing, I personally don't consider myself sick or disabled. If, after all the test results have come in, it turns out that your husband does have myeloma, I think you and your husband will be surprised to find that the side effects of the current treatment regimens are both minimal and manageable.
There are many reasons to be hopeful—I find it very humbling to be on the receiving end of the amazing research and work that physicians involved with myeloma and other blood disorders have done on our behalf. The future really does look bright!
I would just like to second what others have said about the importance of seeking out a myeloma specialist. If you post information about your location, I'm sure you will get some helpful responses regarding good treatment centers. I think most specialists will work with your local oncologist to devise and supervise a treatment plan for your husband if you so desire.
As Nancy pointed out, many—maybe most—of us are living happy, productive lives. I am doing everything I did before my diagnosis—working, "playing," exercising, etc. Although I don't want to minimize what others may be experiencing, I personally don't consider myself sick or disabled. If, after all the test results have come in, it turns out that your husband does have myeloma, I think you and your husband will be surprised to find that the side effects of the current treatment regimens are both minimal and manageable.
There are many reasons to be hopeful—I find it very humbling to be on the receiving end of the amazing research and work that physicians involved with myeloma and other blood disorders have done on our behalf. The future really does look bright!
Re: Is multiple myeloma really that bad?
Hi Maya,
Sorry to hear about your husband's situation. I don't have a pep talk for you but just wanted you to know that you are not alone. When my husband was diagnosed, he also chose not to go on the internet, but I did, so I understand what you are going through. I had more than a few panic attacks while waiting for final diagnosis and to find out what the course of treatment would be.
My husband was diagnosed in 2012, but didn't start treatment until 2014. He is currently in a clinical trial and doing very well with a low dose regimen of drugs. He told me the other day that he is almost feeling normal. He is so close to remission.
If it is myeloma, please know there are many treatment options to pursue as others on the forum have pointed out. You really have found one of the the best resources for myeloma support.
Jeannie
Sorry to hear about your husband's situation. I don't have a pep talk for you but just wanted you to know that you are not alone. When my husband was diagnosed, he also chose not to go on the internet, but I did, so I understand what you are going through. I had more than a few panic attacks while waiting for final diagnosis and to find out what the course of treatment would be.
My husband was diagnosed in 2012, but didn't start treatment until 2014. He is currently in a clinical trial and doing very well with a low dose regimen of drugs. He told me the other day that he is almost feeling normal. He is so close to remission.
If it is myeloma, please know there are many treatment options to pursue as others on the forum have pointed out. You really have found one of the the best resources for myeloma support.
Jeannie
-
Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Is multiple myeloma really that bad?
This conversation was just what I needed to hear. I was so petrified of this diagnosis for my husband, but the responses here have helped. Thank you all. His bone marrow biopsy is on Wednesday. Will get the "news" a couple of weeks from now.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Is multiple myeloma really that bad?
Hi Maya
Myeloma is a HUGE learning curve, and you really can't tackle it all at once. Consider it a long-term project. I am in my first year, and am still spending a little time every week just learning. But sometimes I just need to pull back and take a break from it, as it can become too consuming, confusing, and sometimes depressing.
Its just part of my life now. After 5 months on treatment (now off treatment), I'm feeling pretty darn good. No longer anemic, and no more pains in my ribs. I can't say the treatment was easy though. I am very grateful for resources like the Beacon where I can interact online with other patients. My local support group has been great too. You get to meet real people with Myeloma who cover the whole spectrum of patients. Myeloma is HIGHLY individual in its many variations and symptoms, and statistics are sometimes completely meaningless as they pertain to the situation of a particular individual.
Best of luck to you and your husband.
RT
Myeloma is a HUGE learning curve, and you really can't tackle it all at once. Consider it a long-term project. I am in my first year, and am still spending a little time every week just learning. But sometimes I just need to pull back and take a break from it, as it can become too consuming, confusing, and sometimes depressing.
Its just part of my life now. After 5 months on treatment (now off treatment), I'm feeling pretty darn good. No longer anemic, and no more pains in my ribs. I can't say the treatment was easy though. I am very grateful for resources like the Beacon where I can interact online with other patients. My local support group has been great too. You get to meet real people with Myeloma who cover the whole spectrum of patients. Myeloma is HIGHLY individual in its many variations and symptoms, and statistics are sometimes completely meaningless as they pertain to the situation of a particular individual.
Best of luck to you and your husband.
RT
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Is multiple myeloma really that bad?
Thank you everyone. Your responses are first positive words I've heard in weeks.
It's been two weeks since doctors told us the most possible diagnosis, but we still don't have all tests done. We know his kidneys are not affected and that his immune system is more than fine, but bone marrow biopsy confirmed multiple myeloma with 50% plasma cells in his bone marrow, but we're still waiting for the rest of blood and urine results. This waiting is nerve wracking.
Thank you for useful links and tips. We will definitely go for second opinion before any treatment, but one small problem is - we're in Europe and don't have any multiple myeloma specialist nearby (at least not the one we could afford). Good thing is that my husband is surrounded with the best doctors available and all are very optimistic and are really trying hard to 'repair' him. Not even once anyone mentioned dying and all they're talking about how this will more likely end up as chronic than deadly disease. They're planning to do stem cell transplantation as soon as possible and at this point I'm more concerned with this than his diagnosis. I'm aware this procedure will make him feel really bad and sick, and I just can't find a way to prepare myself for this as he doesn't look or feel sick at all.
It's been two weeks since doctors told us the most possible diagnosis, but we still don't have all tests done. We know his kidneys are not affected and that his immune system is more than fine, but bone marrow biopsy confirmed multiple myeloma with 50% plasma cells in his bone marrow, but we're still waiting for the rest of blood and urine results. This waiting is nerve wracking.
Thank you for useful links and tips. We will definitely go for second opinion before any treatment, but one small problem is - we're in Europe and don't have any multiple myeloma specialist nearby (at least not the one we could afford). Good thing is that my husband is surrounded with the best doctors available and all are very optimistic and are really trying hard to 'repair' him. Not even once anyone mentioned dying and all they're talking about how this will more likely end up as chronic than deadly disease. They're planning to do stem cell transplantation as soon as possible and at this point I'm more concerned with this than his diagnosis. I'm aware this procedure will make him feel really bad and sick, and I just can't find a way to prepare myself for this as he doesn't look or feel sick at all.
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
29 posts
• Page 1 of 3 • 1, 2, 3