I, too, was healthy prior to my diagnosis with smoldering myeloma in 2008, except for extensive arthritis. The only thing that I noticed on occasion was that I would get totally exhausted with no apparent reason. It didn't happen often, but each time it was quite surprising to me. I also would experience a cold once each winter.
I was scheduled for shoulder surgery in January 2008 and had abnormal blood work during my presurgical checkup. My primary doctor made me promise to see a hematologist / oncologist when I recovered from surgery before he would approve me having the surgery. When I did see the hematologist, he couldn't believe that he was looking at my blood test results because I looked so healthy. But he did the full complement of testing for myeloma and diagnosed me with smoldering myeloma. I was in watch-and-wait mode until the spring of 2009, when my left arm broke and I then was diagnosed as having progressed to active myeloma.
Now, 7 years later and having done induction, an autologous stem cell transplant in 2010, and relapse in 2012, I am doing well on a regimen of Revlimid and dex with Zometa every 6 weeks. I feel fortunate that the doctor who did the presurgical testing alerted my primary about my abnormal bloodwork, and that my primary was insistent on my seeing a hematologist / oncologist. I'm also grateful that, at the time, I worked for a major cancer center that has an excellent myeloma treatment and research program where I have been treated ever since.
Nancy in Phila
Forums
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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: How healthy were you before your myeloma diagnosis?
Hello Annamaria.
I absolutely had no reason to think I had anything wrong with me prior to my diagnosis. My GP discovered a high blood protein on the CBC during my annual physical. Both he and I thought it was just something odd at the time, or possibly an error at the lab. I had no health issues at the time and no symptoms of myeloma.
We did a follow up on the CBC 60 days later and the increased protein blood level initiated further testing and a diagnosis of myeloma.
I'm sorry to hear of your diagnosis, but consider yourself fortunate to be in relatively good health otherwise. This will be an advantage for you as you battle the myeloma monster in the future. Myeloma sneaks up on most people, and for that reason the diagnosis usually comes late and often times after serious problems have surfaced.
Wishing you all the best.
I absolutely had no reason to think I had anything wrong with me prior to my diagnosis. My GP discovered a high blood protein on the CBC during my annual physical. Both he and I thought it was just something odd at the time, or possibly an error at the lab. I had no health issues at the time and no symptoms of myeloma.
We did a follow up on the CBC 60 days later and the increased protein blood level initiated further testing and a diagnosis of myeloma.
I'm sorry to hear of your diagnosis, but consider yourself fortunate to be in relatively good health otherwise. This will be an advantage for you as you battle the myeloma monster in the future. Myeloma sneaks up on most people, and for that reason the diagnosis usually comes late and often times after serious problems have surfaced.
Wishing you all the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: How healthy were you before your myeloma diagnosis?
AnnaMaria.
Your post got me to thinking about my "journey" into multiple myeloma also. There are many common lead ups I think for everyone. But, until you know where to look, you can't see the signs. Now that I know what I have, I can read the text on symptoms and other people's first hand experiences and think back that, yes, I had that, and that, etc., etc.
Like you, I too had gum disease. Is this also an indicator or just coincidence?
I had a staph infection, I had two lots of pneumonia, shingles and various 24-hour bugs. None of these things led to my being tested. It was only on my own insistence that I was sent to an immunologist who tested me for everything, and that's how I found out.
My main symptom was that I just didn't feel right. But, in hindsight, the symptoms were there all along. But, like others here, I can't say I was in any way expecting the diagnosis of a terminal illness. Whilst I felt "off", I still maintained a level of fitness, and considered myself healthy. I just thought there was a small glitch in my system, so to speak.
Vicki
Your post got me to thinking about my "journey" into multiple myeloma also. There are many common lead ups I think for everyone. But, until you know where to look, you can't see the signs. Now that I know what I have, I can read the text on symptoms and other people's first hand experiences and think back that, yes, I had that, and that, etc., etc.
Like you, I too had gum disease. Is this also an indicator or just coincidence?
I had a staph infection, I had two lots of pneumonia, shingles and various 24-hour bugs. None of these things led to my being tested. It was only on my own insistence that I was sent to an immunologist who tested me for everything, and that's how I found out.
My main symptom was that I just didn't feel right. But, in hindsight, the symptoms were there all along. But, like others here, I can't say I was in any way expecting the diagnosis of a terminal illness. Whilst I felt "off", I still maintained a level of fitness, and considered myself healthy. I just thought there was a small glitch in my system, so to speak.
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How healthy were you before your myeloma diagnosis?
Oh, man. I was on top of the world! I was discharged from the Army the previous September and I was still working out, running a few miles about 3 times a week. Best shape of my life. Then January came and I get this really weird ear infection. Got some meds, got it cleared up, went back to running. Then I got a cold in February that went into a pneumonia. Before I knew it, my lung was punctured from about 4 liters of empyema goodness.
Spent 5 years in the Army; the only time I ever had to go to sick call was for my wisdom teeth, and I would only get a cold when the seasons change, around October and the end of February.
Spent 5 years in the Army; the only time I ever had to go to sick call was for my wisdom teeth, and I would only get a cold when the seasons change, around October and the end of February.
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Shwan - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 30, 2012
- Age at diagnosis: 25
Re: How healthy were you before your myeloma diagnosis?
I was generally healthy as well. The doctors were surprised I had not been feeling badly since my counts were so off on diagnosis. However, there were a few things that in hindsight were possibly connected.
I was diagnosed with hypothyroidism (like a number of others!) a few years earlier. Seven years earlier, I was diagnosed with osteopenia, which actually may have been an early manifestation of myeloma. I also had had chronic back pain for forty years, due to arthritis and degenerative disk disease, which I managed by exercise. For a couple of weeks after my first vertebra fracture, I thought the back pain was due to these old back issues.
The "miss" that frustrates me the most is that I had intermittent rib pain for about two years, had gone to my primary care, had an x-ray, and was told it was costochondritis. I asked other doctors, who had no suggestion, and searched the web multiple times, it was so strange. Never found anything, even though rib pain comes up as a common early symptom.
Finally, the year before my diagnosis I was easily frustrated and angered over things that wouldn't normally upset me so much.
I was diagnosed with hypothyroidism (like a number of others!) a few years earlier. Seven years earlier, I was diagnosed with osteopenia, which actually may have been an early manifestation of myeloma. I also had had chronic back pain for forty years, due to arthritis and degenerative disk disease, which I managed by exercise. For a couple of weeks after my first vertebra fracture, I thought the back pain was due to these old back issues.
The "miss" that frustrates me the most is that I had intermittent rib pain for about two years, had gone to my primary care, had an x-ray, and was told it was costochondritis. I asked other doctors, who had no suggestion, and searched the web multiple times, it was so strange. Never found anything, even though rib pain comes up as a common early symptom.
Finally, the year before my diagnosis I was easily frustrated and angered over things that wouldn't normally upset me so much.
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: How healthy were you before your myeloma diagnosis?
I see a lot of others were taken by surprise with this cancer as well.
I was above average healthy for a 73 year old woman. I never had any problems of any kind, and when others were having flu, colds and such, I never did. I could do the work of a much younger woman, taking on manual work in our yard – with stone and gravel work – as recent as a few months before my diagnosis.
I had a fall in August of 2013 in the yard, landing on my backside, and began to have soreness of the lower spine area at night when in bed. Kept thinking I might need to get an x-ray, but it just wasn't bad enough to get me to the doctor. Then in October, while my husband was out of town, I strained my back pulling a heavy garbage can uphill to the road. By the next morning, I could not walk without holding on to a wall or furniture. I was in pain.
When my husband returned the next day, we went to minor med. The physician there told me it looked like severe arthritis to him and told me to see my PCP in a week and ask for a bone scan.
I went to my primary care doctor, filled her in, and she said no arthritis, and probably just a bad sprain. I made it through Christmas with a limp, still fixed the Christmas Eve festivities for my family and was doing pretty well considering. By January 5, I started having what seemed to be sciatic pain in my right leg, and was getting worse.
Decided to go to a orthopedic specialist. He did x-rays and said I had spinal stenosis. Gave me high dose ibuprofen, said that should take care of the pain, and, if not, I could get an MRI as a next step. Within a week, we were scheduling the MRI.
When my husband and I went back to the orthopedist to get the result of the MRI, that's when my whole world changed. He said you have a large, expansile mass in your sacrum and we are going to refer you to West Clinic to see a cancer specialist. (Bone marrow biopsy followed and confirmed the diagnosis).
My husband was as blown away as I was, being a stage IV melanoma, 15+ year survivor himself. We had already been the full gamut of life as a cancer patient for years. I had always been the healthy one and could take care of him when he needed it.
I was not a candidate for SCT, so started Velcade-Revlimid-dexamethasone on April 24, 2014, with Zometa bone infusions also. After a few months, graduated to maintenance Revlimid with continuation of Zometa in clinic once a month. I will continue this until something changes.
All my labs / 24-hour urine have been virtually normal from the beginning and continue to be normal. I am feeling very well now. Enjoying life one day at a time. I feel blessed. No need to worry about what may, or may not, be down the road. Today life is good.
I was above average healthy for a 73 year old woman. I never had any problems of any kind, and when others were having flu, colds and such, I never did. I could do the work of a much younger woman, taking on manual work in our yard – with stone and gravel work – as recent as a few months before my diagnosis.
I had a fall in August of 2013 in the yard, landing on my backside, and began to have soreness of the lower spine area at night when in bed. Kept thinking I might need to get an x-ray, but it just wasn't bad enough to get me to the doctor. Then in October, while my husband was out of town, I strained my back pulling a heavy garbage can uphill to the road. By the next morning, I could not walk without holding on to a wall or furniture. I was in pain.
When my husband returned the next day, we went to minor med. The physician there told me it looked like severe arthritis to him and told me to see my PCP in a week and ask for a bone scan.
I went to my primary care doctor, filled her in, and she said no arthritis, and probably just a bad sprain. I made it through Christmas with a limp, still fixed the Christmas Eve festivities for my family and was doing pretty well considering. By January 5, I started having what seemed to be sciatic pain in my right leg, and was getting worse.
Decided to go to a orthopedic specialist. He did x-rays and said I had spinal stenosis. Gave me high dose ibuprofen, said that should take care of the pain, and, if not, I could get an MRI as a next step. Within a week, we were scheduling the MRI.
When my husband and I went back to the orthopedist to get the result of the MRI, that's when my whole world changed. He said you have a large, expansile mass in your sacrum and we are going to refer you to West Clinic to see a cancer specialist. (Bone marrow biopsy followed and confirmed the diagnosis).
My husband was as blown away as I was, being a stage IV melanoma, 15+ year survivor himself. We had already been the full gamut of life as a cancer patient for years. I had always been the healthy one and could take care of him when he needed it.
I was not a candidate for SCT, so started Velcade-Revlimid-dexamethasone on April 24, 2014, with Zometa bone infusions also. After a few months, graduated to maintenance Revlimid with continuation of Zometa in clinic once a month. I will continue this until something changes.
All my labs / 24-hour urine have been virtually normal from the beginning and continue to be normal. I am feeling very well now. Enjoying life one day at a time. I feel blessed. No need to worry about what may, or may not, be down the road. Today life is good.
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Bonnie - Name: Bonnie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April, 2014
- Age at diagnosis: 73
Re: How healthy were you before your myeloma diagnosis?
From your replies, I see that many people were also in good health. How strange that a serious disease like this can overturn the life of fit people!
Wfmom, I found the way you recounted facts fascinating. In fact, I stopped breathing while reading your January 6 report and started again after the Jan 17 one!
Vicstir, there is one theory according to which ongoing infections lead to cancer, the main Italian oncologist, Milan’s Umberto Veronesi, thinks so. And gum disease is a long lasting infection.
Swan, I feel so sorry for you, you should still be on top of the world at your age. Let us hope that a cure is found soon and that you will live and be well until you turn 100!
Wfmom, I found the way you recounted facts fascinating. In fact, I stopped breathing while reading your January 6 report and started again after the Jan 17 one!
Vicstir, there is one theory according to which ongoing infections lead to cancer, the main Italian oncologist, Milan’s Umberto Veronesi, thinks so. And gum disease is a long lasting infection.
Swan, I feel so sorry for you, you should still be on top of the world at your age. Let us hope that a cure is found soon and that you will live and be well until you turn 100!
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: How healthy were you before your myeloma diagnosis?
One day in August 2013, I rode with the bicycle club. Not a care in the world. The next day, pushing to reattach a downspout, I fractured a vertebra. Thinking it was a pulled muscle, I didn't go to the doctor for a few months. By then I had bone lesions big and small, a plasmacytoma tumor, and the beginnings of pulmonary effusion. Until my doc said "it is bone and it could be cancer", I never had any thought of blood or bone trouble.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
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