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Not yet diagnosed but tests are bad
My husband has not yet been diagnosed with multiple myeloma but has had a number of tests done and yesterday urine results showed what I suspected of multiple myeloma. I received a total shock as he was always a healthy man, very active in sports and basically never had any health problems. His bone pain started to appear last Spring, but no one really tested as to the reason to that untill he had to do some physical work this fall and it stroke bakc really bad. We recently moved and have no family or friends in the area so I am totally overwhelmed. We have two little girls and I am just trying to find a courage to keep myself together. I was wondering how everyone and their closes ones coped with the news. How long did it take to acutally accept it...Thanks to all.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
I'm smoldering and it's tough because I know that it will eventually become active myeloma. Your husband may be lucky that they found this now. Not when something happened like a broken bone for no apparent reason. Find a myeloma specialist.
There are many tests that should be done to see where he's at. Bone Marrow Biopsy, skeletal survey, MRI and, PET scan.
Good luck.
There are many tests that should be done to see where he's at. Bone Marrow Biopsy, skeletal survey, MRI and, PET scan.
Good luck.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Not yet diagnosed but tests are bad
Although the news of your husband's diagnosis may seem devastating, there are many new treatments being discovered all the time. I was diagnosed last summer and had chemotherapy for 3 months. In the Fall I had an autologous stem cell transplant which required hospitalization for about 2 weeks. This treatment is believed to add years to the remission time. After being home for a month I started to feel great again, was eating well and my energy level was good. The only side effect which remained from the chemo was neuropathy in my legs and feet, but it's managed with pain medication and does not hinder my lifestyle. I've decided that however long I'm in remission, I will make the most of the time I have left on this earth. And with new treatments being developed, a lot can happen in the next 5 to 10 years, possibly even a cure.
Check to see if there are any cancer support groups in your area. Talking with a counselor may help to ease your anxiety and could be a way to find friends that are in your situation also. Taking each day at a time will make everything seem less overwhelming, and staying positive is important (though not always easy to do). I wish you and your husband all the best.
Check to see if there are any cancer support groups in your area. Talking with a counselor may help to ease your anxiety and could be a way to find friends that are in your situation also. Taking each day at a time will make everything seem less overwhelming, and staying positive is important (though not always easy to do). I wish you and your husband all the best.
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rosecitylady
Re: Not yet diagnosed but tests are bad
Hi Noway, Sorry to hear that your husband has multiple myeloma, and that you have a young family too. I found out that I had this with a crash, literally...several fractured vertebrae! I won't go into all the details, but after the initial shock wears off, probably the best thing that you could do for your own peace of mind is to consult with myeloma specialists in order to plan a course of treatment. One thing to consider is the cytogenetic profile, since that may have a bearing on treatment. Of course it's great that you found the Beacon, since there is a wealth of information here. You can read other patients' journeys, look up scientific papers, and in general become more knowledgeable about multiple myeloma. As we say in our support group..'Knowledge is Power'. Best wishes to you and hope you will stay in touch with the Forums too. Many myeloma patients are long term survivors too. i am in my fourth year since diagnosis, and am doing fine.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
Stan W. wrote:
> I'm smoldering and it's tough because I know that it will eventually become
> active myeloma. Your husband may be lucky that they found this now. Not
> when something happened like a broken bone for no apparent reason. Find a
> myeloma specialist.
> There are many tests that should be done to see where he's at. Bone Marrow
> Biopsy, skeletal survey, MRI and, PET scan.
> Good luck.
Thanks Stan. My husband is just about to have the bone scan as well this morning. I am trying to stay positive for us all...but even writing this now I am on the edge of crying and I am at work where nobody knows about this so far...not good.
We will try to get to the specialists asap - he has already had CT scan, MRI done.
> I'm smoldering and it's tough because I know that it will eventually become
> active myeloma. Your husband may be lucky that they found this now. Not
> when something happened like a broken bone for no apparent reason. Find a
> myeloma specialist.
> There are many tests that should be done to see where he's at. Bone Marrow
> Biopsy, skeletal survey, MRI and, PET scan.
> Good luck.
Thanks Stan. My husband is just about to have the bone scan as well this morning. I am trying to stay positive for us all...but even writing this now I am on the edge of crying and I am at work where nobody knows about this so far...not good.
We will try to get to the specialists asap - he has already had CT scan, MRI done.-
noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
rosecitylady wrote:
> Although the news of your husband's diagnosis may seem devastating, there
> are many new treatments being discovered all the time. I was diagnosed
> last summer and had chemotherapy for 3 months. In the Fall I had an
> autologous stem cell transplant which required hospitalization for about 2
> weeks. This treatment is believed to add years to the remission time.
> After being home for a month I started to feel great again, was eating well
> and my energy level was good. The only side effect which remained from the
> chemo was neuropathy in my legs and feet, but it's managed with pain
> medication and does not hinder my lifestyle. I've decided that however
> long I'm in remission, I will make the most of the time I have left on this
> earth. And with new treatments being developed, a lot can happen in the
> next 5 to 10 years, possibly even a cure.
>
> Check to see if there are any cancer support groups in your area. Talking
> with a counselor may help to ease your anxiety and could be a way to find
> friends that are in your situation also. Taking each day at a time will
> make everything seem less overwhelming, and staying positive is important
> (though not always easy to do). I wish you and your husband all the best.
Thank you. I do hope for the best. He is a trooper, it is porbably the stage where the brain and heart just cannot process this info...it just seems totally unbelievable that something like this could have happened to us. I just think we took a wrong path somewhere. I am not usually used to pouring my heart into internet like this but I am glad I found people like you virtually.
> Although the news of your husband's diagnosis may seem devastating, there
> are many new treatments being discovered all the time. I was diagnosed
> last summer and had chemotherapy for 3 months. In the Fall I had an
> autologous stem cell transplant which required hospitalization for about 2
> weeks. This treatment is believed to add years to the remission time.
> After being home for a month I started to feel great again, was eating well
> and my energy level was good. The only side effect which remained from the
> chemo was neuropathy in my legs and feet, but it's managed with pain
> medication and does not hinder my lifestyle. I've decided that however
> long I'm in remission, I will make the most of the time I have left on this
> earth. And with new treatments being developed, a lot can happen in the
> next 5 to 10 years, possibly even a cure.
>
> Check to see if there are any cancer support groups in your area. Talking
> with a counselor may help to ease your anxiety and could be a way to find
> friends that are in your situation also. Taking each day at a time will
> make everything seem less overwhelming, and staying positive is important
> (though not always easy to do). I wish you and your husband all the best.
Thank you. I do hope for the best. He is a trooper, it is porbably the stage where the brain and heart just cannot process this info...it just seems totally unbelievable that something like this could have happened to us. I just think we took a wrong path somewhere. I am not usually used to pouring my heart into internet like this but I am glad I found people like you virtually.
-
noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
Nancy Shamanna wrote:
> Hi Noway, Sorry to hear that your husband has multiple myeloma, and that
> you have a young family too. I found out that I had this with a crash,
> literally...several fractured vertebrae! I won't go into all the details,
> but after the initial shock wears off, probably the best thing that you
> could do for your own peace of mind is to consult with myeloma specialists
> in order to plan a course of treatment. One thing to consider is the
> cytogenetic profile, since that may have a bearing on treatment. Of course
> it's great that you found the Beacon, since there is a wealth of
> information here. You can read other patients' journeys, look up
> scientific papers, and in general become more knowledgeable about multiple
> myeloma. As we say in our support group..'Knowledge is Power'. Best
> wishes to you and hope you will stay in touch with the Forums too. Many
> myeloma patients are long term survivors too. i am in my fourth year since
> diagnosis, and am doing fine.
Thanks Nancy. I was thinking yesterday when would be the time that the kids have to know this. Our older one is hyper sensitive and I think she already senses something is not good as she started having nervous breakdowns..and was awake at 5am, which never happens normally.
> Hi Noway, Sorry to hear that your husband has multiple myeloma, and that
> you have a young family too. I found out that I had this with a crash,
> literally...several fractured vertebrae! I won't go into all the details,
> but after the initial shock wears off, probably the best thing that you
> could do for your own peace of mind is to consult with myeloma specialists
> in order to plan a course of treatment. One thing to consider is the
> cytogenetic profile, since that may have a bearing on treatment. Of course
> it's great that you found the Beacon, since there is a wealth of
> information here. You can read other patients' journeys, look up
> scientific papers, and in general become more knowledgeable about multiple
> myeloma. As we say in our support group..'Knowledge is Power'. Best
> wishes to you and hope you will stay in touch with the Forums too. Many
> myeloma patients are long term survivors too. i am in my fourth year since
> diagnosis, and am doing fine.
Thanks Nancy. I was thinking yesterday when would be the time that the kids have to know this. Our older one is hyper sensitive and I think she already senses something is not good as she started having nervous breakdowns..and was awake at 5am, which never happens normally.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
About the children..maybe just share with them that their father is getting tests done and may need some treatment for a disease. No need to speculate on the future really...it's way too soon to tell what sort of long term problems might present themselves. i was literally terrified at the time of my dx, but it all turned out better than I thought it would (and my family were bracing themselves for the worst I know, and are still very protective of me. They were also relieved at the outcome.)
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
My kids are elementary school age. I have just told them at this time mom is sick and is trying to get well.
That is the course I am taking as I don't want to scare them, especially if I have long Drs. visits I don't want them scared mom may not come home, ect.
Unless things take for the worse I just feel this is enough enformation for them to digest.
That is the course I am taking as I don't want to scare them, especially if I have long Drs. visits I don't want them scared mom may not come home, ect.
Unless things take for the worse I just feel this is enough enformation for them to digest.
Re: Not yet diagnosed but tests are bad
I'm so sorry that your husband has multiple myeloma. I think the time surrounding the initial diagnosis is the hardest part for both the person with multiple myeloma and his/her caretakers. Hereing the "c" word is overwhelming! But for many people once treatment starts, they begin to feel better and can resume their normal activities. EJ was diagnosed just over two years ago and is doing very well -- he's still working full time, and is back to playing competitive volleyball. I echo others who replied - get a second opinion, find a support group, and learn as much as you can about your husband's multiple myeloma. But with all the advances researchers are making with multiple myeloma, and the numerous treatments available, I'm sure he will be with you and your children for many years
Lyn
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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