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Scared
I have a history of solitary plasmacytoma in my left femur. (dec 2009). After surgery and radiation everything was just fine until dec 2010. I went for for regular check ups regarding blood and urine. Unfortunately I started to produce M-proteins in serum. The two latest tests show M-spikes at 4 and 5. My somewhat stiff lower back has gotten worse and I sometimes experience referred pain from my right groin spreading towards the knee. All parameters measured in my blood are excellent except for the M-spike. Now I´m terrified to have progressed to multiple myeloma. I find it hard to explain for my wife and two sons of 7 and 9 that I probably will be diagnosed with multiple myeloma in a close future. You tend to hold on to the hope that it won´t progress from "wait and see mode" to multiple myeloma. I worry about the future not beeing able to see my chilren grow up and be able to support them. I worry about my wife being alone with all the responsibilities if I come down with an agressive high risk myeloma. I´m also afraid of calling my hematologist for a new appointment beacuase of my back problems wich I strongly suspect origins from myeloma. I simply have problems to emotionally accept the fact that I just like my father will have to fight this terrible condition. He was diagnosed feb 2009 at the age of 59. I will try to pull myself together and make that call but I´m really scared of the outcome....Best regards to all of you mm-patients and caregivers, Mattias from Sweden
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Scared
Mattias-
Not knowing and worrying about all of the things that you mention is often worse than knowing. If you have progressed to multiple myeloma you can then begin to really make plans for treatment so that none of the things that you fear right now possibly don't occur. There are so many good treatments for this disease that you may very likely be around to see your children grow up and move on to their adult lives.
I wish you the best. Remember that "knowledge is power".
Nancy
Not knowing and worrying about all of the things that you mention is often worse than knowing. If you have progressed to multiple myeloma you can then begin to really make plans for treatment so that none of the things that you fear right now possibly don't occur. There are so many good treatments for this disease that you may very likely be around to see your children grow up and move on to their adult lives.
I wish you the best. Remember that "knowledge is power".
Nancy
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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: Scared
Nancy! Thank you for the kind words and support. I will bear that in mind when calling the hospital monday morning. Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Scared
Hello Mattias,
I'm sorry to hear about your most recent lab results and the pain you've been experiencing. I can understand why those sorts of things would make you worried and scared.
I do believe, however, that Nancy is absolutely right. It is very important at this point to find out more about what is going on in your body. There is a chance that things are not nearly as bad as you think they are, and you will be relieved if you find out that's the case.
On the other hand, if your disease has progressed, then you will know and you'll be able to start taking the steps necessary to allow you to live as long as possible.
If you do nothing, you will probably stay scared and worried, and any disease you have will just keep progressing.
Good luck, Mattias. Let us know how things go.
- Boris.
I'm sorry to hear about your most recent lab results and the pain you've been experiencing. I can understand why those sorts of things would make you worried and scared.
I do believe, however, that Nancy is absolutely right. It is very important at this point to find out more about what is going on in your body. There is a chance that things are not nearly as bad as you think they are, and you will be relieved if you find out that's the case.
On the other hand, if your disease has progressed, then you will know and you'll be able to start taking the steps necessary to allow you to live as long as possible.
If you do nothing, you will probably stay scared and worried, and any disease you have will just keep progressing.
Good luck, Mattias. Let us know how things go.
- Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Scared
Don't get too ahead of yourself!
You have not even been diagnosed with Myeloma, let alone aggressive Myeloma and are attributing your pains to this diagnosis!
My own example: I have been having ongoing neck pain since about 6 months post transplant and of course I think Oh no, it must be my multiple myeloma returning.
My myeloma doc said she thought it was muscular try a new pillow! Didn't help! went to my family doc and she said, Hate to tell you this but since the weather has been cold and damp lately she feels it's arthtritis in my neck forming. (common in 30 somethings aparantly, I thought I was too young!) a few exrays later I have mild changes of the curve in my neck, probable cause is degenerative (arthritic) in nature. So now off to the massage therapist I go. Way better then chemo
You have not even been diagnosed with Myeloma, let alone aggressive Myeloma and are attributing your pains to this diagnosis!
My own example: I have been having ongoing neck pain since about 6 months post transplant and of course I think Oh no, it must be my multiple myeloma returning.
My myeloma doc said she thought it was muscular try a new pillow! Didn't help! went to my family doc and she said, Hate to tell you this but since the weather has been cold and damp lately she feels it's arthtritis in my neck forming. (common in 30 somethings aparantly, I thought I was too young!) a few exrays later I have mild changes of the curve in my neck, probable cause is degenerative (arthritic) in nature. So now off to the massage therapist I go. Way better then chemo
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alyssa
Re: Scared
Boris and Alyssa! Strange what fear can twist ones mind. I got an appointment to sort things out. Great to hear that your problems with your neck was not myeloma. Thanks for your encouragement! Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Scared
Mattias,
First there is no history to support that because your dad has multiple myeloma that you are at risk! In fact it would be a real rarity if you were to get it too. Second, at yhour age the predictions would be for a long term survival with agressive treatments and the new novel agents they have today.
So minimize the worry and seek the knowledge of what is going on to best get the proper treatment.
I am 67 and am in my sixth year of treatment. You can have a lot of hope regardless of the diagnosis!
First there is no history to support that because your dad has multiple myeloma that you are at risk! In fact it would be a real rarity if you were to get it too. Second, at yhour age the predictions would be for a long term survival with agressive treatments and the new novel agents they have today.
So minimize the worry and seek the knowledge of what is going on to best get the proper treatment.
I am 67 and am in my sixth year of treatment. You can have a lot of hope regardless of the diagnosis!
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turbineman - Name: Hugh
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan 2006
- Age at diagnosis: 61
Re: Scared
Hello Hugh
I've been to the hospital for blood and urine tests. Tomorrow it's time for regular x-ray of my pelvis, ribs and spine. If nothing show up on the x-rays they're planning to do a full body MRI. The results from blood and urine will take a couple of days more because of outsourcing of the electrophoresis. My worries depends of the fact that I've had a solitary plasmacytoma which has been succecfully treated but the two latest bloddtests show m-protein in serum. If I haven't had plasmacytoma I would be diagnosed with MGUS. Writing to all of you and your encouraging answers helped me to overcome my fear and make contact with my doctor. Mattias
I've been to the hospital for blood and urine tests. Tomorrow it's time for regular x-ray of my pelvis, ribs and spine. If nothing show up on the x-rays they're planning to do a full body MRI. The results from blood and urine will take a couple of days more because of outsourcing of the electrophoresis. My worries depends of the fact that I've had a solitary plasmacytoma which has been succecfully treated but the two latest bloddtests show m-protein in serum. If I haven't had plasmacytoma I would be diagnosed with MGUS. Writing to all of you and your encouraging answers helped me to overcome my fear and make contact with my doctor. Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Scared
Here's a thought: your fear may well be a bigger enemy to you than the cancer itself... attitude is everything in this fight. Get the help you need, and stay positive. This cancer is on the threshold of being beaten: very, very many of us here are going to be the first line to be able to say "multiple myeloma cancer survivor." Indeed, we may already be, but the statistics haven't borne it out yet... that's very exciting to me.
Have strength and faith, friend. You'll get through this!
Have strength and faith, friend. You'll get through this!
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Scared
Dear friends
Today I was diagnosed with multiple myeloma. My x-rays showed a plasmacytoma in my first lumbar vertebra. I immediately had a CT scan for better information. About one third of the vertebras volume is now a plasmacytoma spreading into soft tissue. Tomorrow it's time for MRI. Bloodtest shows no anemia. All parameters excellent. Still waiting for electrophoresis regarding M-spike. I'm scheduled for stabilising vertebral surgery wednesday next week. Then radiation, chemo and auto SCT. I spoke to a friend who said to me "you have lived with this beast's breath behind your back for a while. Now you can face him straight in the eyes a start to take care of business". That's exactly how I feel. I feel strong and full of hope. It could be worse. I will keep you updated. Mattias
Today I was diagnosed with multiple myeloma. My x-rays showed a plasmacytoma in my first lumbar vertebra. I immediately had a CT scan for better information. About one third of the vertebras volume is now a plasmacytoma spreading into soft tissue. Tomorrow it's time for MRI. Bloodtest shows no anemia. All parameters excellent. Still waiting for electrophoresis regarding M-spike. I'm scheduled for stabilising vertebral surgery wednesday next week. Then radiation, chemo and auto SCT. I spoke to a friend who said to me "you have lived with this beast's breath behind your back for a while. Now you can face him straight in the eyes a start to take care of business". That's exactly how I feel. I feel strong and full of hope. It could be worse. I will keep you updated. Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
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