Hi,
I'm trying to educate myself since my husband's doctor believes his initial tests point to plasmacytosis or multiple myeloma (maybe the former is just a subset of the latter).
My husband is 43, healthy and fit. He has had major pain in his hip and leg for about 5 months. Initially the doctor sent him to physical therapy for sciatica but on Friday he finally had an MRI.
The MRI showed a large lesion on his hip and irregular cells in bone marrow around his spine. Blood tests done at the same time had unusually high globulin. The doctors believe that this combination of symptoms points to myeloma and we are coming to grips with this information and the scary waiting period before we get more tests on Monday and Tuesday. He will get more blood work done and a hip X-ray on Monday and a bone marrow biopsy and likely more tests on Tuesday when he sees the oncologist.
Did any of you initially present in a similar way? Does this sound like myeloma? My husband is freaking out worrying about not being there for our young kids.
Thanks!
Forums
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Testing for myeloma
EF11,
I realize that this can a very scary time as you and your husband wait for all the test results to come in. We've all been there. If it does turn out to be multiple myeloma, note that there are quite excellent multiple myeloma treatments that have recently become available. Many folks with multiple myeloma can lead a good quality life and can live to see their children grow up.
A lot of myeloma patients do present with bone pain and/or lesions, and a high serum globlulin level can be a sign of multiple myeloma. But really, you need the rest of the blood tests and the bone marrow biopsy to confirm if it is multiple myeloma.
You might want to also discuss having a whole body PET/CT scan to confirm the nature of the lesions and to look for lesions elsewhere.
Most importantly, you want to be working with a top doctor that specializes in multiple myeloma, if this is what it turns out to be. If you let us know what city you are in, folks on this forum can make recommendations as to where to look for these kinds of specialists.
I realize that this can a very scary time as you and your husband wait for all the test results to come in. We've all been there. If it does turn out to be multiple myeloma, note that there are quite excellent multiple myeloma treatments that have recently become available. Many folks with multiple myeloma can lead a good quality life and can live to see their children grow up.
A lot of myeloma patients do present with bone pain and/or lesions, and a high serum globlulin level can be a sign of multiple myeloma. But really, you need the rest of the blood tests and the bone marrow biopsy to confirm if it is multiple myeloma.
You might want to also discuss having a whole body PET/CT scan to confirm the nature of the lesions and to look for lesions elsewhere.
Most importantly, you want to be working with a top doctor that specializes in multiple myeloma, if this is what it turns out to be. If you let us know what city you are in, folks on this forum can make recommendations as to where to look for these kinds of specialists.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Testing for myeloma
Multibilly,
Thanks very much for your response. It has been quite an emotional weekend waiting to learn more. The good news is we have lots of expert support. We live in Boston and have radiologists in the family reviewing my husband's imaging. His generalist referred him to a myeloma specialist at Mass General - Dr. Noopur Raje - who we are seeing on Tuesday. Also, a close friend manages the clinical trials at Dana Farber and she made us an appointment to see Dr. Paul Richard on Wednesday.
I realize with our limited information we just need to wait for some answers, but we are trying to get a grasp on the possibilities. The not knowing is causing a lot of anxiety. And it is hard to find out the real scoop on myeloma searching on the net as I understand lots of data is outdated due to very recent improvements in treatments coupled with my husband's young age.
What we would love to understand is the possible prognoses and statistics for a young, otherwise healthy man under excellent care in 2014.
Thanks again and my heart goes out to everyone who is going through this.
Thanks very much for your response. It has been quite an emotional weekend waiting to learn more. The good news is we have lots of expert support. We live in Boston and have radiologists in the family reviewing my husband's imaging. His generalist referred him to a myeloma specialist at Mass General - Dr. Noopur Raje - who we are seeing on Tuesday. Also, a close friend manages the clinical trials at Dana Farber and she made us an appointment to see Dr. Paul Richard on Wednesday.
I realize with our limited information we just need to wait for some answers, but we are trying to get a grasp on the possibilities. The not knowing is causing a lot of anxiety. And it is hard to find out the real scoop on myeloma searching on the net as I understand lots of data is outdated due to very recent improvements in treatments coupled with my husband's young age.
What we would love to understand is the possible prognoses and statistics for a young, otherwise healthy man under excellent care in 2014.
Thanks again and my heart goes out to everyone who is going through this.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Testing for myeloma
You probably meant Dr. Paul Richardson. Dr. Raje and Dr. Richardson are gods in the field of multiple myeloma. You are in exceptionally good hands.
I would really suggest not going down the rat hole of looking at survival stats. Everything you will find is quite dated and does not reflect the state of current treatment. Every multiple myeloma patient is also a snowflake and each person's prognosis depends on many, many different factors. Try not to fret too much and just wait to hear what the above docs have to say.
I would really suggest not going down the rat hole of looking at survival stats. Everything you will find is quite dated and does not reflect the state of current treatment. Every multiple myeloma patient is also a snowflake and each person's prognosis depends on many, many different factors. Try not to fret too much and just wait to hear what the above docs have to say.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Testing for myeloma
Thanks!! Good to hear confirmation that we are in top care. We will take deep breaths and hope for good test results. I appreciate your responses and will post back when we get more info.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Testing for myeloma
If your husband is diagnosed with myeloma, you will be in really good hands with both of the oncologists who you are going to see this week. As MultiBilly has said, don't fret about survival statistics. Each person's myeloma is very different and each person responds to treatment differently. There are many good treatments in use now that work well even with people who are diagnosed with high risk, aggressive myeloma. The probability of your husband living to see your children grow up is quite high.
As you read more in this forum, you will find many success stories among the people who post who are even younger than your husband is. Unfortunately, there are also the stories of those who are having a lot of problems with their myeloma and with their treatments. But supporting one another in the good and in the difficult times is what we are all about. Learning from one another is also really important. And learning of the latest research, clinical trials, treatment options, etc is what we are about.
All the best to your husband and you and your family as you possibly begin this new journey,
Nancy in Phila
As you read more in this forum, you will find many success stories among the people who post who are even younger than your husband is. Unfortunately, there are also the stories of those who are having a lot of problems with their myeloma and with their treatments. But supporting one another in the good and in the difficult times is what we are all about. Learning from one another is also really important. And learning of the latest research, clinical trials, treatment options, etc is what we are about.
All the best to your husband and you and your family as you possibly begin this new journey,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Testing for myeloma
I wanted to report back here that we got confirmation today that my husband does have multiple myeloma. We are coming to grips with the tremendous change in our lives and are emotionally exhausted after a long 3 days of worrying and trying to learn what we are in for. We met with Dr. Raje at MGH today and were reassured and understand it all much better. Thanks to Multibilly and Nancy for your feedback over the weekend. I'm sure I'll be back as we start down the path to treatment.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Testing for myeloma
Hello EF,
I am very sorry to hear about your husband's diagnosis. All of us here wish you and your husband the best and are here to help in whatever ways we can. Just make sure that both of you keep in mind that there are lots of powerful treatments for multiple myeloma and even more coming down the pike in the next several years. Also, it won't take you long browsing here in the forum and elsewhere on the site to see that there are many people who have been in your situation who are living full and vital lives.
I am very sorry to hear about your husband's diagnosis. All of us here wish you and your husband the best and are here to help in whatever ways we can. Just make sure that both of you keep in mind that there are lots of powerful treatments for multiple myeloma and even more coming down the pike in the next several years. Also, it won't take you long browsing here in the forum and elsewhere on the site to see that there are many people who have been in your situation who are living full and vital lives.
Re: Testing for myeloma
EF11,
I am sorry to see you and your husband having to join the club.
Hopefully, you found Dr. Raje to be very knowledgeable and supportive (I was very impressed by her when I've talked to her on the phone). Again, you are in very good hands with the doctors you have access to. Let us know if anybody on the forum can help you with this journey.
I am sorry to see you and your husband having to join the club.
Hopefully, you found Dr. Raje to be very knowledgeable and supportive (I was very impressed by her when I've talked to her on the phone). Again, you are in very good hands with the doctors you have access to. Let us know if anybody on the forum can help you with this journey.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Testing for myeloma
I so understand the days of worrying, anxiety and not knowing what is next. I am now in the waiting frame. I had my skeketal imagery along with 24 hour urine test together with now three blood tests. Nov 24 will be the day I learn if a bone marrow biopsy will be required. My prayers for everyone in this forum. God Bless All.
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Gigi2
10 posts
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