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Husband just diagnosed today
My husband was just diagnosed today. We have had a suspicions, as his father died 20 years ago from this. All I keep thinking is how can I keep him here longer! What do I do? We have a 16-month- old and a 5-year-old and I just keep thinking I can't do it without him! I have Googled for three days straight to the point my head, eyes, and stomach hurt! Just hoping to hear from someone who understands and hopefully knows what to expect.
Re: Husband just diagnosed today
Hello.
First of all, be assured that treatment for myeloma is vastly different from what it was 20 years ago. Life expectancy has increased to the point that many consider myeloma a chronic disease, and the outlook is only getting better. Most of us would agree that treatment is very tolerable, and while some adjustments have to be made, most of us live a pretty normal lifestyle, continuing to work, travel, enjoy hobbies, and just generally enjoying life.
The most important thing you can do for your husband is to be sure he is seen by a myeloma specialist – someone who treats only myeloma and related diseases. If you share your general location, I'm sure others here on the forum will make suggestions for some excellent options.
Don't be thinking about losing him – instead be proactive and find a doctor who specializes in myeloma. He or she can work with your local oncologist to implement a treatment plan. It seems overwhelming at first, but it will all fall into place.
Meanwhile, take a deep breath and tell yourself (and him) that there is much to be hopeful about.
We've all been in your place, and we do understand. Feel free to vent, ask questions, etc. What you're feeling is normal. It seems like a dark place right now, but it will get better!
RRR
First of all, be assured that treatment for myeloma is vastly different from what it was 20 years ago. Life expectancy has increased to the point that many consider myeloma a chronic disease, and the outlook is only getting better. Most of us would agree that treatment is very tolerable, and while some adjustments have to be made, most of us live a pretty normal lifestyle, continuing to work, travel, enjoy hobbies, and just generally enjoying life.
The most important thing you can do for your husband is to be sure he is seen by a myeloma specialist – someone who treats only myeloma and related diseases. If you share your general location, I'm sure others here on the forum will make suggestions for some excellent options.
Don't be thinking about losing him – instead be proactive and find a doctor who specializes in myeloma. He or she can work with your local oncologist to implement a treatment plan. It seems overwhelming at first, but it will all fall into place.
Meanwhile, take a deep breath and tell yourself (and him) that there is much to be hopeful about.
We've all been in your place, and we do understand. Feel free to vent, ask questions, etc. What you're feeling is normal. It seems like a dark place right now, but it will get better!
RRR
Re: Husband just diagnosed today
Hi Mom101,
I wanted to make a brief response having read your post.
I am so sorry that you are now involved with this illness, this battle, you must be very young having children of those ages.
Trying to be positive about this, there has certainly never been a better time to be diagnosed with multiple myeloma. The progress over recent years has been incredible and at present we are seeing new treatments and procedures appear every year. Try not to worry too much about what you read on the internet, survival statistics for example are based entirely on past results not on the future developments which are arriving even now. Although myeloma is a rare disease we are blessed that it receives a huge amount of research attention and the results are benefiting most of the patients.
There are many Myeloma Beacon members who will share their experiences and knowledge with you and the amount of information available here is awesome.
On a personal point, I have had this illness since 2008 although I was undiagnosed until 2012. I wish I had known then what I know now. For me and many others it is the emotional stress which effects us so much, while often the actual treatment can be very effective and not too difficult, often being provided on an 'out-patient' basis. The majority of newly diagnosed patients respond very quickly and very well. They can then enjoy years of near-normal life, simply with routine blood tests and consultations, many even continue to work. Good periods of remission or stable disease are common and these periods bring us closer to our dream of when the disease will be considered as curable.
Best Wishes to you and your husband.
Victor L (I am not a medical professional)
I wanted to make a brief response having read your post.
I am so sorry that you are now involved with this illness, this battle, you must be very young having children of those ages.
Trying to be positive about this, there has certainly never been a better time to be diagnosed with multiple myeloma. The progress over recent years has been incredible and at present we are seeing new treatments and procedures appear every year. Try not to worry too much about what you read on the internet, survival statistics for example are based entirely on past results not on the future developments which are arriving even now. Although myeloma is a rare disease we are blessed that it receives a huge amount of research attention and the results are benefiting most of the patients.
There are many Myeloma Beacon members who will share their experiences and knowledge with you and the amount of information available here is awesome.
On a personal point, I have had this illness since 2008 although I was undiagnosed until 2012. I wish I had known then what I know now. For me and many others it is the emotional stress which effects us so much, while often the actual treatment can be very effective and not too difficult, often being provided on an 'out-patient' basis. The majority of newly diagnosed patients respond very quickly and very well. They can then enjoy years of near-normal life, simply with routine blood tests and consultations, many even continue to work. Good periods of remission or stable disease are common and these periods bring us closer to our dream of when the disease will be considered as curable.
Best Wishes to you and your husband.
Victor L (I am not a medical professional)
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Husband just diagnosed today
Dear Mom101,
Welcome to the Forum and I hope that it proves useful to you to learn more about myeloma.
I agree with the other comments! How the treatment of myeloma was 20 years ago, did not include the novel therapies that are available today. I think it would have been unusual to have a stem cell transplant too.
There has been a lot of progress made in research of several different types of treatments, from proteasome inhibitors, immunomodulatory drugs, antibody types of treatments, and more. You do really need to find a treatment centre and doctor or doctors who are very knowledgeable about myeloma, since there has been so much progress, even in the last 2-3 years. Sounds like you have caught this early, which is also a good sign.
Best wishes to you and your husband and family.
Welcome to the Forum and I hope that it proves useful to you to learn more about myeloma.
I agree with the other comments! How the treatment of myeloma was 20 years ago, did not include the novel therapies that are available today. I think it would have been unusual to have a stem cell transplant too.
There has been a lot of progress made in research of several different types of treatments, from proteasome inhibitors, immunomodulatory drugs, antibody types of treatments, and more. You do really need to find a treatment centre and doctor or doctors who are very knowledgeable about myeloma, since there has been so much progress, even in the last 2-3 years. Sounds like you have caught this early, which is also a good sign.
Best wishes to you and your husband and family.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband just diagnosed today
I can't thank you enough for your responses Yes, I'm 29 and he is 36 (the same age his father was!) We have a meeting with Princess Margaret Hospital in Toronto (date and time still to be discussed). Do I request a specialist? Do I need to find our own?
Also, the part that scares me the most is we were told there are "multiple growths on his spine". Does this determine a stage in cancer? What does that mean?
I found comfort in your replies and I'm sorry you have also found yourselves with this
.
Any advice on how to comfort him? He is so depressed . He just says he doesn't want to die and that he doesn't want to tell our son. I know we need to research more and be knowledgeable, but google is too damn scary and the hospital seems like forever away!
Also, the part that scares me the most is we were told there are "multiple growths on his spine". Does this determine a stage in cancer? What does that mean?
I found comfort in your replies and I'm sorry you have also found yourselves with this
.Any advice on how to comfort him? He is so depressed . He just says he doesn't want to die and that he doesn't want to tell our son. I know we need to research more and be knowledgeable, but google is too damn scary and the hospital seems like forever away!
Re: Husband just diagnosed today
I just keep reading over your responses! Thank you! And yes! Come a VERY LONG WAY. My husband's father is actually in the medical history book for being the first bone marrow transplant 
(in Canada anyway).
(in Canada anyway).Re: Husband just diagnosed today
Hi Mom101,
I'm responding to your comment "... the part that scares me the most is we were told there are "multiple growths on his spine". Does this determine a stage in cancer? What does that mean?"
Bone involvement such as the development of "plasmacytomas" in the form of "lytic lesions" is a fairly common multiple myeloma symptom. Lytic lesions are focused areas of the bone that are experiencing damage due to the myeloma disease interfering with some of the normal bone maintenance processes in the body. The spine in particular is a very common area for these lytic lesions to form.
With modern multiple myeloma treatments and the use of bisphosphonates such as Zometa, multiple myeloma bone damage can be halted and the skeleton can be strengthened before any serious complications such as fractures occur.
The level of bone damage in a multiple myeloma patient has nothing to do with staging the disease. In fact, I would suggest not getting caught up in thinking about staging when it comes to multiple myeloma at this time. Based on the earlier ISS multiple myeloma staging system (the ISS staging system is the generally accepted staging system for multiple myeloma), the multiple myeloma disease stage has no impact on well a patient will respond to treatment. There are some new additional factors such as genetic mutations that factor into the new, revised ISS multiple myeloma staging system that may impact the choice of a specific treatment plan for a patient, but I wouldn't try to get your head wrapped around that topic quite yet.
I'll leave it to the Canadians on this forum to comment on navigating the health care system in Canada and getting hooked up with a multiple myeloma specialist. Take heart - things have greatly advanced with myeloma treatments since your husband's father dealt with the disease
I'm responding to your comment "... the part that scares me the most is we were told there are "multiple growths on his spine". Does this determine a stage in cancer? What does that mean?"
Bone involvement such as the development of "plasmacytomas" in the form of "lytic lesions" is a fairly common multiple myeloma symptom. Lytic lesions are focused areas of the bone that are experiencing damage due to the myeloma disease interfering with some of the normal bone maintenance processes in the body. The spine in particular is a very common area for these lytic lesions to form.
With modern multiple myeloma treatments and the use of bisphosphonates such as Zometa, multiple myeloma bone damage can be halted and the skeleton can be strengthened before any serious complications such as fractures occur.
The level of bone damage in a multiple myeloma patient has nothing to do with staging the disease. In fact, I would suggest not getting caught up in thinking about staging when it comes to multiple myeloma at this time. Based on the earlier ISS multiple myeloma staging system (the ISS staging system is the generally accepted staging system for multiple myeloma), the multiple myeloma disease stage has no impact on well a patient will respond to treatment. There are some new additional factors such as genetic mutations that factor into the new, revised ISS multiple myeloma staging system that may impact the choice of a specific treatment plan for a patient, but I wouldn't try to get your head wrapped around that topic quite yet.
I'll leave it to the Canadians on this forum to comment on navigating the health care system in Canada and getting hooked up with a multiple myeloma specialist. Take heart - things have greatly advanced with myeloma treatments since your husband's father dealt with the disease
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Husband just diagnosed today
Thank you!
What questions should I be asking at first hospital visit?
What questions should I be asking at first hospital visit?
Re: Husband just diagnosed today
Mom101,
I am 38, diagnosed with myeloma at 32, I have a 15 month old baby, so I understand the worries of myeloma and a baby.This disease is so rare in people our age. I am 7 years into this and doing quite well all things considered. I am treated at Princess Margaret Hospital (PMH).
If you are going to PMH, then you were referred to the myeloma clinic. The hospital has a dedicated myeloma hematology clinic, with myeloma specialists and supporting staff. Lots of research happens there, and you will have access to the most up to date (approved in Canada) treatments.
I am 38, diagnosed with myeloma at 32, I have a 15 month old baby, so I understand the worries of myeloma and a baby.This disease is so rare in people our age. I am 7 years into this and doing quite well all things considered. I am treated at Princess Margaret Hospital (PMH).
If you are going to PMH, then you were referred to the myeloma clinic. The hospital has a dedicated myeloma hematology clinic, with myeloma specialists and supporting staff. Lots of research happens there, and you will have access to the most up to date (approved in Canada) treatments.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Husband just diagnosed today
Hello Mom101,
I think that you are going to the top hospital in Ontario, as far as myeloma research is concerned. Dr. Donna Reece and Dr. Suzanne Trudel are at Princess Margaret and focus on myeloma. I would think that you would be referred to a myeloma specialist at the hospital, but you could check their website for the bios of the specialists there. Possibly other people reading the Forum could give you more specifics. Please let us know how everything is going for you all.
I think that you are going to the top hospital in Ontario, as far as myeloma research is concerned. Dr. Donna Reece and Dr. Suzanne Trudel are at Princess Margaret and focus on myeloma. I would think that you would be referred to a myeloma specialist at the hospital, but you could check their website for the bios of the specialists there. Possibly other people reading the Forum could give you more specifics. Please let us know how everything is going for you all.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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