My husband who is 40 years old was recently diagnosed with multiple myeloma. We are devistated and scared. He started with shoulder pain and ultimately was diagnosed with this disease. His onc. says that it is very early in the disease with 25 % I don't know what that means but I am assuming that it has something to do with how advanced the disease is. We have 3 small children with our youngest being only 8 months old. What does this mean for our future. We have so much yet to do. Our children need us. The internet is filled with so much negativity. His onc. started him on dex and rev. As soon as he started taking the dex he started feeling much less pain. he is also on a monthly dose of zometa. Our lives have changed so drastically in the last few weeks. We go from being optomistic to really scared. Please help me understand what is going on.
Katie in Texas
Forums
Re: Help
Hello Katie,
I am very sorry to hear about your husband's diagnosis. I am glad, though, that you are reaching out for help and information about how to deal with this change in your lives.
I know you will get lots of advice here from people who are very knowledgeable. The main thing I will say now -- and I may add more later -- is that you should not panic. Your husband is still with you and your children, and he almost certainly is going to be around for many years to come.
You and your husband have some important decisions that you will need to make soon about, among other things, how he will be treated and where he will be treated. Keep digging and educating yourself about all the options! If your husband hasn't already been seen by a myeloma specialist at a major myeloma treatment center, make sure he is. In fact, consider having him looked at by people at two or three major treatment centers. Listen to what they say, find out your options, research them, and then decide what you want to do.
A key reason people get scared in this situation is because they're facing something completely new and unknown to them. Learning more is therefore a great too for fighting the fear.
And keep reaching out and asking questions. You'll find that helps a lot too.
Good luck!
I am very sorry to hear about your husband's diagnosis. I am glad, though, that you are reaching out for help and information about how to deal with this change in your lives.
I know you will get lots of advice here from people who are very knowledgeable. The main thing I will say now -- and I may add more later -- is that you should not panic. Your husband is still with you and your children, and he almost certainly is going to be around for many years to come.
You and your husband have some important decisions that you will need to make soon about, among other things, how he will be treated and where he will be treated. Keep digging and educating yourself about all the options! If your husband hasn't already been seen by a myeloma specialist at a major myeloma treatment center, make sure he is. In fact, consider having him looked at by people at two or three major treatment centers. Listen to what they say, find out your options, research them, and then decide what you want to do.
A key reason people get scared in this situation is because they're facing something completely new and unknown to them. Learning more is therefore a great too for fighting the fear.
And keep reaching out and asking questions. You'll find that helps a lot too.
Good luck!
Re: Help
Hi Katie,
Your family is in my thoughts and prayers during this difficult time. Any cancer diagnosis is unquestionably scary, especially at your husband's age. Know though that the wealth of knowledge about myeloma and the treatments available for myeloma patients is increasing rapidly. The average life span for a myeloma patient these days is probably 7-10 years. I know that at your age, that doesn't sound any where near long enough. But a few years ago the average survival was 5 years, and a few years before that it was even shorter. This is because of all of the new treatments that are available, and there are at least 2 more that will most likely be available within the next year or so.
If you haven't already, get an opinion from a myeloma specialist at M.D. Anderson or one of the other large myeloma centers in the U.S. Ask your husband's specialist if he's a candidate for a stem cell transplant.
Hopefully your husband will achieve remission after his first treatment regimen, maybe for several years. The truth is, the myeloma's likely to come back again, but you can fight it again with another one of the many treatment options. There will be ups and downs. But you can pull through this!
Your family is in my thoughts and prayers during this difficult time. Any cancer diagnosis is unquestionably scary, especially at your husband's age. Know though that the wealth of knowledge about myeloma and the treatments available for myeloma patients is increasing rapidly. The average life span for a myeloma patient these days is probably 7-10 years. I know that at your age, that doesn't sound any where near long enough. But a few years ago the average survival was 5 years, and a few years before that it was even shorter. This is because of all of the new treatments that are available, and there are at least 2 more that will most likely be available within the next year or so.
If you haven't already, get an opinion from a myeloma specialist at M.D. Anderson or one of the other large myeloma centers in the U.S. Ask your husband's specialist if he's a candidate for a stem cell transplant.
Hopefully your husband will achieve remission after his first treatment regimen, maybe for several years. The truth is, the myeloma's likely to come back again, but you can fight it again with another one of the many treatment options. There will be ups and downs. But you can pull through this!
Re: Help
One other thing, Katie ... You also may want to contact this other forum member, Karen,
https://myelomabeacon.org/forum/member426.html
She was just diagnosed a month ago, so she has been facing a lot of the same questions and issues that you and your husband are facing. I suspect it will be good, for both of you, to get in contact with one another.
Again, good luck with everything!
https://myelomabeacon.org/forum/member426.html
She was just diagnosed a month ago, so she has been facing a lot of the same questions and issues that you and your husband are facing. I suspect it will be good, for both of you, to get in contact with one another.
Again, good luck with everything!
Re: Help
My husband is 53 and was diagnosed July 2010, after an abnormal blood test. He has undergone 6 cycles of chemo and will probably have stem cell transplant in the next couple of months. Amazingly, he had almost no side effects from the chemo.-- He was able to go to work every day.
You have already received advice to go to myeloma specialists--which is very important. The next advice I can give is "Chose to Live", not wait for death. The truth of the matter is that none of us really knows what awaits us the next year, month, week, or even the next day-- we only think we do. The difference in knowing that my husband has cancer is now I have to exercise my faith with a "known" instead of an "unknown".
Finally, get a financial plan in place and get the information about your benefits together. If you already have a plan, check it out so you can be prepared to deal with the financial impact of whatever happens. This will free your mind up to concentrate on the most important thing, which is getting well, and living well.
You have already received advice to go to myeloma specialists--which is very important. The next advice I can give is "Chose to Live", not wait for death. The truth of the matter is that none of us really knows what awaits us the next year, month, week, or even the next day-- we only think we do. The difference in knowing that my husband has cancer is now I have to exercise my faith with a "known" instead of an "unknown".
Finally, get a financial plan in place and get the information about your benefits together. If you already have a plan, check it out so you can be prepared to deal with the financial impact of whatever happens. This will free your mind up to concentrate on the most important thing, which is getting well, and living well.
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psmbgeneral
Re: Help
Hello Katie,
All good advice posted above! Avoid all of the negative stuff on the internet! Chose not to be average! If you and your husband are not average then most of that negative stuff does not apply to you anyway! The first two things I heard after I learned I had multiple myeloma was "how old is he" and "how long does he have"! I had a lot of laughs from that one and I still seek the humor anywhere I can find it! I did not take offense to the comments as I understand the general public knows so little about cancer. I was the same way. It is sort of like a pop test in school. I did not want it but I got it. My mother found out she had multiple myeloma approx 18 months before I did so I already knew about multiple myeloma. We lost her this past may but NOT from multiple myeloma nor any issues from the multiple myeloma. It has been 8 years for me. I am now 53 years young, thank you very much! I took 10 hours last semester on line (just to see if I could do it) and did OK with a 3.0 GPA. Shoot, I may go ahead and finish my degree, who knows! Do not be afraid to live! Life is Good, Living it is Better! It did take me a few years to understand that it is OK to go ahead and live! Our positive thoughts and prayers for you and your husband! (As I always told my friends and family "Negative thoughts are not allowed and if you have any, I don't want to hear them!")
Our best to you and your family!
Ted
All good advice posted above! Avoid all of the negative stuff on the internet! Chose not to be average! If you and your husband are not average then most of that negative stuff does not apply to you anyway! The first two things I heard after I learned I had multiple myeloma was "how old is he" and "how long does he have"! I had a lot of laughs from that one and I still seek the humor anywhere I can find it! I did not take offense to the comments as I understand the general public knows so little about cancer. I was the same way. It is sort of like a pop test in school. I did not want it but I got it. My mother found out she had multiple myeloma approx 18 months before I did so I already knew about multiple myeloma. We lost her this past may but NOT from multiple myeloma nor any issues from the multiple myeloma. It has been 8 years for me. I am now 53 years young, thank you very much! I took 10 hours last semester on line (just to see if I could do it) and did OK with a 3.0 GPA. Shoot, I may go ahead and finish my degree, who knows! Do not be afraid to live! Life is Good, Living it is Better! It did take me a few years to understand that it is OK to go ahead and live! Our positive thoughts and prayers for you and your husband! (As I always told my friends and family "Negative thoughts are not allowed and if you have any, I don't want to hear them!")
Our best to you and your family!
Ted
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Ted
Re: Help
I feel your pain! As you have read above, dont read the negative stuff. Everyone is so different, you can not compare him to others. I have have Myeloma since Dec 09, went thru 6 months Chemo, without a stem cell transplant I have been in remission for a year and a half, I was 56 years old at the time of diagnosis. I went to MD Anderson In Houston treatment and they are wonderful and have the latest and greatest. I was scared too, my ribs/pelvic and spine had fractures, I had a broken arm, my kidneys were shutting down when I was diagnosed. I had the fight of my life but was able to overcome all the obstacles and doing ok. Oh ya, I have nuropothy on my hands and feet, my lower back hurts and my right side. But considering what I went thru, its all okay.
Stay positive and stay strong. My prayers to you and your husband....Debbie
Stay positive and stay strong. My prayers to you and your husband....Debbie
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Deb
Re: Help
Katie: We all know exactly what you're going through - regardless of how long we've known that we, or our loved one, have had multiple myeloma. And, regardless of the age differences, each of us shares the same type of feelings. We were all scared, angry, shocked, surprised, as well as a million other emotions.
It's great that you're checking the internet for information. The more you know, the better prepared you will be to deal with this terrible disease. The best advice I can give you is to check the date on any articles that you read, before you read them - and before you take them to heart. Personally, if the article wasn't published in 2009 or later, I usually don't read. You'll soon learn how to weed out "old news".
You will find lots of support on these forums ... others, like yourself, trying to navigate the unknown, and deal with the unexpected.
My thoughts and prayers are with you.
Sarah
It's great that you're checking the internet for information. The more you know, the better prepared you will be to deal with this terrible disease. The best advice I can give you is to check the date on any articles that you read, before you read them - and before you take them to heart. Personally, if the article wasn't published in 2009 or later, I usually don't read. You'll soon learn how to weed out "old news".
You will find lots of support on these forums ... others, like yourself, trying to navigate the unknown, and deal with the unexpected.
My thoughts and prayers are with you.
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Help
Katie,
First of all, multiple myeloma is no longer the death sentence it once was. So take a deep breath. You have some time to sort through your decision process, while you work your way through the information you will be sorting through. Just focus on getting your husband comfortable with any pain he is having while you do your research.
There are some debates on the subject of treatment going on that you will run into and have to negotiate. Manage the multiple myeloma with new novel therapy drugs (like you are on now) OR attempt to eradicate the disease with stem cell transplant (SCT). Just because you choose a SCT doesn't mean you will be successful in eradicating the disease. Once you begin to look at these two choices you will need then to decide do you want to do one SCT frontline therapy or tandem (two) as frontline therapy. There are only two facilities doing tandem frontline therapy, known as Total Therapy. UAMS (Arkansas) and Huntsman (Utah). This treatment is garnering the highest overall survival (length of life from diagnosis) for the low risk myeloma group (of which 80% of us are). I have some papers up on the blog you can find to help you. The down side of SCT is that it dramatically impacts your immune system. The downside of managing your disease with novel therapies is that it also dramatically impacts your immune system.
Bottom line, it will change your life no matter what you do. HOW it changes your life is what your battle will be, in addition to prolonging his life beyond the old grim 3-5 years.
We made are choice and are happy with it, but I'm very supportive of whatever makes sense for each myeloma patient's particular set of circumstances. Because your husband is young, the prevailing view has been to treat him aggressively. Although that is not a universal view amongst physicians.
Best to you,
Lori Puente
First of all, multiple myeloma is no longer the death sentence it once was. So take a deep breath. You have some time to sort through your decision process, while you work your way through the information you will be sorting through. Just focus on getting your husband comfortable with any pain he is having while you do your research.
There are some debates on the subject of treatment going on that you will run into and have to negotiate. Manage the multiple myeloma with new novel therapy drugs (like you are on now) OR attempt to eradicate the disease with stem cell transplant (SCT). Just because you choose a SCT doesn't mean you will be successful in eradicating the disease. Once you begin to look at these two choices you will need then to decide do you want to do one SCT frontline therapy or tandem (two) as frontline therapy. There are only two facilities doing tandem frontline therapy, known as Total Therapy. UAMS (Arkansas) and Huntsman (Utah). This treatment is garnering the highest overall survival (length of life from diagnosis) for the low risk myeloma group (of which 80% of us are). I have some papers up on the blog you can find to help you. The down side of SCT is that it dramatically impacts your immune system. The downside of managing your disease with novel therapies is that it also dramatically impacts your immune system.
Bottom line, it will change your life no matter what you do. HOW it changes your life is what your battle will be, in addition to prolonging his life beyond the old grim 3-5 years.
We made are choice and are happy with it, but I'm very supportive of whatever makes sense for each myeloma patient's particular set of circumstances. Because your husband is young, the prevailing view has been to treat him aggressively. Although that is not a universal view amongst physicians.
Best to you,
Lori Puente
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Help
Dear Katie,
I, too, was diagnosed when I was 40 years old. I just celebrated my 55th birthday, and plan to
celebrate many more. There has been a lot of good advice posted already. Good practical advice. So all I want to add is to remember that all those negative statistics you are reading on the internet are AVERAGES. They don't account for the strength a young body has for fighting. They don't account for all the hope and spirit that any one person and their family can bring to living their life with this disease. And the advances that have been made in treating this disease are enormous. I like to think of all the available treatments as tools in a toolbox. Your husband's toolbox is FULL. And there are more tools on the way. You have lots of options. No question that this period of your life will feel chaotic and frightening as you learn what those options are, but that will change. Your life will return to a routine - a new normal. Just don't forget to have fun and laugh and continue to do the things you love as a family. That's what makes a life!
I, too, was diagnosed when I was 40 years old. I just celebrated my 55th birthday, and plan to
celebrate many more. There has been a lot of good advice posted already. Good practical advice. So all I want to add is to remember that all those negative statistics you are reading on the internet are AVERAGES. They don't account for the strength a young body has for fighting. They don't account for all the hope and spirit that any one person and their family can bring to living their life with this disease. And the advances that have been made in treating this disease are enormous. I like to think of all the available treatments as tools in a toolbox. Your husband's toolbox is FULL. And there are more tools on the way. You have lots of options. No question that this period of your life will feel chaotic and frightening as you learn what those options are, but that will change. Your life will return to a routine - a new normal. Just don't forget to have fun and laugh and continue to do the things you love as a family. That's what makes a life!
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Marty
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