My husband was first diagnosed 18 months ago at the age of 40. He was treated with Revlimid and dexamethasone. All was great for a while and life returned to normal. However, a month ago, my husband started complaining of chest pain. Long story short, it is back. We are devastated. He is being treated with a weekly shot of Velcade for 8 weeks. This should put him in remission again. We have been seeing a local oncologist who is very vague with information. We know nothing about light chain and all those technical statistics that everyone seems to know by heart. We are in the process of scheduling an appointment with md anderson. I am so fearful that I may lose my husband. We have three small children all under the age of 10. I don't know what this all means. Is it something that we can control and manage? Can our lives ever return to normal again? I would love to hear from anyone who can offer me a ray of hope, especially from people who are similar in age.
Thank You
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Re: scared
Because your husband is relatively young, statistically he is more likely to respond to treatment. Given his age it would not surprise me that the doctors at md Anderson recommend him getting a SCT (bone marrow transplant) probably infusing his own marrow after induction therapy. If all works that should put him into remission.
multiple myeloma is very treatable. I know you are scared but multiple myeloma is not a death sentence. I for example have been in remission for 3 plus years. I work full time and an active lifestyle. There are many people like me. Some struggle with this disease but over the last 5 years with the introduction of the novel agents, more people are able to fight the disease and survive much longer than they were able to do just 10 years ago.
So there is light at the end of the tunnel.
Ron
multiple myeloma is very treatable. I know you are scared but multiple myeloma is not a death sentence. I for example have been in remission for 3 plus years. I work full time and an active lifestyle. There are many people like me. Some struggle with this disease but over the last 5 years with the introduction of the novel agents, more people are able to fight the disease and survive much longer than they were able to do just 10 years ago.
So there is light at the end of the tunnel.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: scared
Hello from sunny Seattle ......40+ days in a row without rain and counting ..... Kate,
In your posting you suggest that you dont really understand all the numbers and the words that are used to describe multiple myeloma and how a patient is doing.
Therefore.....One of the most important things that you, your husband and your family can do to gain control over the disease and his health care is to GET EDUCATED about myeloma as soon as possible.
I think that not understanding what eveyone is talking about...meaning the doctors....nurses...and other patients and their family members can make you and your family feel even more helpless as this terrible disease takes over your husbands body and health.
You dont have to know evertything overnight but you can start learning TODAY.
I am going to suggest a few places to start.....if you need more email us back.....
#1. Go to the "RESOURCES" page on the Myeloma Beacon (see the menu at the top of the page). There is lots of basic information to study about what myeloma is and how it is treated the link to this page is posted below:
https://myelomabeacon.org/resources/
#2. Go to the "LINKS" page on the Myeloma Beacon (see the menu at the top of the page)
Then scroll down to the International Myeloma Foundation (IMF) link (listed below)
Click on the link http://www.myeloma.org
When the page opens there are several resources that will help you immensley.
Look for the "What is Myeloma?" video talk given by Dr Morie Gertz....watch the video !
Request a Free IMF Info Pack
Call the IMF Hotline with Your Questions
After you do these things contact the Beacon again and let us know if these materials helped or not. I wish you luck. I have several friends at MD Anderson in the Myeloma program.....you will receive superb care at Anderson.
In your posting you suggest that you dont really understand all the numbers and the words that are used to describe multiple myeloma and how a patient is doing.
Therefore.....One of the most important things that you, your husband and your family can do to gain control over the disease and his health care is to GET EDUCATED about myeloma as soon as possible.
I think that not understanding what eveyone is talking about...meaning the doctors....nurses...and other patients and their family members can make you and your family feel even more helpless as this terrible disease takes over your husbands body and health.
You dont have to know evertything overnight but you can start learning TODAY.
I am going to suggest a few places to start.....if you need more email us back.....
#1. Go to the "RESOURCES" page on the Myeloma Beacon (see the menu at the top of the page). There is lots of basic information to study about what myeloma is and how it is treated the link to this page is posted below:
https://myelomabeacon.org/resources/
#2. Go to the "LINKS" page on the Myeloma Beacon (see the menu at the top of the page)
Then scroll down to the International Myeloma Foundation (IMF) link (listed below)
Click on the link http://www.myeloma.org
When the page opens there are several resources that will help you immensley.
Look for the "What is Myeloma?" video talk given by Dr Morie Gertz....watch the video !
Request a Free IMF Info Pack
Call the IMF Hotline with Your Questions
After you do these things contact the Beacon again and let us know if these materials helped or not. I wish you luck. I have several friends at MD Anderson in the Myeloma program.....you will receive superb care at Anderson.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: scared
Kate, as being recently diagnosed my wife is also devastated. What really helped her deal with the the disease is to attend all my meetings with the oncologist. The other thing I learned is that to stay off the various web sites looking at survivor rates. They all paint a bleak picture. But, as I have learned from other patients we are all individuals and not just a number. Our response to treatment will vary as will our longevity. Nobody really knows how long you will live as was the case before we got cancer.
I don't consider cancer a death sentence but rather a wake up call to prepare for the worst, hope for the best and consider each day a gift.
Jerry.
I don't consider cancer a death sentence but rather a wake up call to prepare for the worst, hope for the best and consider each day a gift.
Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
4 posts
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