My husband has just been diagnosed and we know he has probably rib and back involvement due to pain, anemia (hemoglobin 10.0), kidney involvement due to positive Bence Jones and serum creatinine of 1.9, IgA 1802.
I have searched the internet for long-term survival stories and have found several. But if Stage III, is this really true? Possibility of long term survival?
We have an appointment with the director of the myeloma program at Sarah Cannon Cancer Institute in Nashville on January 7th. No bone marrow biopsy yet or free light chain test. No scans either, just Bence Jones and SPEP by PCP to confirm suspected diagnosis.
My husband is 58 and has never been really sick. A burn-the-candle-at-both-ends kinda guy. He is so tired now at the end of his day. It is hard to see. Thanks
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Is multiple myeloma really treatable for years?
I'm glad you found us, though I'm very sorry you need to be here. The Myeloma Beacon is a fantastic source of information and support.
Stage of disease isn't nearly as important in myeloma as it is in other cancers. How he responds to treatment is more telling. Many people report feeling better, with more energy, once their myeloma is controlled.
I was diagnosed at age 42 over a year ago. My Mom recently told me that during those first few months after diagnosis, she was worried I was going to die soon because of how sick I seemed. I'm happy to say that the chemotherapy has controlled my disease well and I'm in remission. Since the dust settled, I've been traveling, working (a little), hiking, exercising, taking care of my kids and house, and otherwise participating in my life. My Mom has said she is so thrilled at how well I seem to be doing. It's definitely not normal - I can't go at my usual pace. But it's good, and it's more than we thought possible last year.
I hope this story gives you a little bit of something to hold onto, a tiny bit of hope that there is a possibility of improvement. It's certainly not a straight path downhill.
Stage of disease isn't nearly as important in myeloma as it is in other cancers. How he responds to treatment is more telling. Many people report feeling better, with more energy, once their myeloma is controlled.
I was diagnosed at age 42 over a year ago. My Mom recently told me that during those first few months after diagnosis, she was worried I was going to die soon because of how sick I seemed. I'm happy to say that the chemotherapy has controlled my disease well and I'm in remission. Since the dust settled, I've been traveling, working (a little), hiking, exercising, taking care of my kids and house, and otherwise participating in my life. My Mom has said she is so thrilled at how well I seem to be doing. It's definitely not normal - I can't go at my usual pace. But it's good, and it's more than we thought possible last year.
I hope this story gives you a little bit of something to hold onto, a tiny bit of hope that there is a possibility of improvement. It's certainly not a straight path downhill.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Is multiple myeloma really treatable for years?
Thank you so much, Tracy. I went through breast cancer treatment 11 years ago and a breast cancer forum was of great help to me, so I am sure this site will be as well.
I have read that Stage III myeloma can be treated very successfully. I have read several post here of people being that stage and pretty sick who are now doing well. This encourages me greatly.
Thanks again.
I have read that Stage III myeloma can be treated very successfully. I have read several post here of people being that stage and pretty sick who are now doing well. This encourages me greatly.
Thanks again.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Is multiple myeloma really treatable for years?
As you will learn every person and their myeloma is different. There are many people who really are at death's door when they are diagnosed. They start treatment, respond well and return to almost a normal life. I've been living with myeloma for 8 years and have had my ups and downs over the years. But, I always bounce back and continue to live my life. In my support group there is one woman who has been living with myeloma for 22 years. She also has had her ups and downs, but continues to respond well to treatment and continues to live her life.
So, once your husband sees the hematologist and has all of the other tests that are standard for diagnosing myeloma and where on the spectrum he is, there will begin to be more light for both of you. If he begins treatment he should begin to feel quite a bit better within a couple of months, if not sooner.
Of course there are people with such aggressive myeloma that they don't respond well to any of the treatments and aren't with us for very long. But, mostly your husband can anticipate doing well and being here for quite a while.
All the best,
Nancy in Phila
So, once your husband sees the hematologist and has all of the other tests that are standard for diagnosing myeloma and where on the spectrum he is, there will begin to be more light for both of you. If he begins treatment he should begin to feel quite a bit better within a couple of months, if not sooner.
Of course there are people with such aggressive myeloma that they don't respond well to any of the treatments and aren't with us for very long. But, mostly your husband can anticipate doing well and being here for quite a while.
All the best,
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: Is multiple myeloma really treatable for years?
Thanks Nancy. You guys here may have to help me out in the months to come. 
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Is multiple myeloma really treatable for years?
This is a valid question and worries me.
In my case I was diagnosed to have a blood cancer in 1985. I went through blood tests, bone marrow biopsy, MRI etc. My ENT doctor overruled the oncologist. He felt that my symptom (I lost my hearing in one day travel from London to Chicago) is due to a virus infection and my blood test - high protein etc. is due to X chromosome inherited G6PD. My hearing recovered with cytoxan / prednisone treatment.
Today my physician says what I had was MGUS.
Three years ago my general physician, after observing high protein, sent me to a hematologist. After all tests he declared MGUS. In July last year, I was sent to the Mayo Clinic. After all tests, I was declared to be indolent multiple myeloma. In February of this year, I was placed in Stage IIA. I had no physical symptoms. Two tiny lytic bone lesions in my spine, which were not detected through a series of X-rays but only by PET scan. All blood tests, such as - M-spike (3.9), IgG (5760), KFLCS, K/L ratio were on the very high side.
I was reluctant to start my treatment hoping some physician would rule it out to be multiple myeloma.I started my treatment in March with Revlimid plus dexamethasone and Zometa once in three month. Today I finished my 8th cycle.
Since the 6th cycle, my M-spike is zero. What I have is "suggestive positive monoclonal gammopathy for IgG and Kappa isotopes."
I hope to be declared in CR after the coming blood test.
All of us behave differently for multiple myeloma. Also words of physicians for life expectancy need to be taken cautiously. My wife asked how long I may live and the answer was it could be as little as three to five months.
In my case I have suffered more from side effects of the medicine - especially dexamethasone and Zometa than myeloma itself. Another has been psychological - what will happen to me? I have devoted my time to work - twelve to fifteen hours a day in spite of side effects and psychological issues.
I hope my experience helps other to reflect on their situation better.
Thank you.
In my case I was diagnosed to have a blood cancer in 1985. I went through blood tests, bone marrow biopsy, MRI etc. My ENT doctor overruled the oncologist. He felt that my symptom (I lost my hearing in one day travel from London to Chicago) is due to a virus infection and my blood test - high protein etc. is due to X chromosome inherited G6PD. My hearing recovered with cytoxan / prednisone treatment.
Today my physician says what I had was MGUS.
Three years ago my general physician, after observing high protein, sent me to a hematologist. After all tests he declared MGUS. In July last year, I was sent to the Mayo Clinic. After all tests, I was declared to be indolent multiple myeloma. In February of this year, I was placed in Stage IIA. I had no physical symptoms. Two tiny lytic bone lesions in my spine, which were not detected through a series of X-rays but only by PET scan. All blood tests, such as - M-spike (3.9), IgG (5760), KFLCS, K/L ratio were on the very high side.
I was reluctant to start my treatment hoping some physician would rule it out to be multiple myeloma.I started my treatment in March with Revlimid plus dexamethasone and Zometa once in three month. Today I finished my 8th cycle.
Since the 6th cycle, my M-spike is zero. What I have is "suggestive positive monoclonal gammopathy for IgG and Kappa isotopes."
I hope to be declared in CR after the coming blood test.
All of us behave differently for multiple myeloma. Also words of physicians for life expectancy need to be taken cautiously. My wife asked how long I may live and the answer was it could be as little as three to five months.
In my case I have suffered more from side effects of the medicine - especially dexamethasone and Zometa than myeloma itself. Another has been psychological - what will happen to me? I have devoted my time to work - twelve to fifteen hours a day in spite of side effects and psychological issues.
I hope my experience helps other to reflect on their situation better.
Thank you.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is multiple myeloma really treatable for years?
MMFEB16/15,
I do hope you do well and have many more years with your wife and family.
I guess the waiting to get more tests and knowing exactly where we stand is kinda getting to me.
I do hope you do well and have many more years with your wife and family.
I guess the waiting to get more tests and knowing exactly where we stand is kinda getting to me.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Is multiple myeloma really treatable for years?
Dogmom:
You are right about the test. Thank you and I wish you and all of us superb 2016.
You are right about the test. Thank you and I wish you and all of us superb 2016.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is multiple myeloma really treatable for years?
What is your definition of long term?
I was diagnosed in January 2010. I am still here and don't plan on going anywhere for a long time!
Was in remission but currently smoldering again, but still in a very good partial response to my treatment.
I was diagnosed in January 2010. I am still here and don't plan on going anywhere for a long time!
Was in remission but currently smoldering again, but still in a very good partial response to my treatment.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Is multiple myeloma really treatable for years?
MMFEB26,15 I will take 5 years, because every year that goes by we can hope for a cure. Thanks for you encouraging story.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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