When I started feeling poorly before my myeloma diagnosis, I thought it could not be anything serious, and when I discovered what was wrong with me, besides being worried, I was totally surprised. The thing is: I had been very healthy for tens of years. Several of my friends and relatives had cases of the flu, while I didn’t; some had to undergo surgery for one reason or another; others were fighting against ills … and I never caught anything!
True, five years before the diagnosis, I had some depression for three years, but physically I was fine. All along, my only health concern was periodontitis, or gum disease, with consequent teeth problems.
I noticed that several people in this forum said that they, too, were in excellent health, some running many miles, some swimming regularly like me, some working out very long hours.
I wonder how common, then, it is to be perfectly fine and then be hit by this thing! Can you tell me what your experience is?
Forums
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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?
Hi Annamaria,
Most people I have met have been blindsided by their multiple myeloma diagnosis. In my case, my feet and ankles were swelling every day, so we were really thinking it could be kidney or heart issue. Turns out I have amyloid kidney, with the accompanying multiple myeloma - I had never heard of either one!
A few years before that I had carpal tunnel, which has also been described as a factor, but in no way did we make that connection at the time.
I guess it's good to stay on top of things so something like multiple myeloma can be caught as early as possible. I was Stage 3 in 2000 and, after 2 peripheral stem cell transplants (PSCTs), I am still in remission in 2015 … and with great thanks!
Most people I have met have been blindsided by their multiple myeloma diagnosis. In my case, my feet and ankles were swelling every day, so we were really thinking it could be kidney or heart issue. Turns out I have amyloid kidney, with the accompanying multiple myeloma - I had never heard of either one!
A few years before that I had carpal tunnel, which has also been described as a factor, but in no way did we make that connection at the time.
I guess it's good to stay on top of things so something like multiple myeloma can be caught as early as possible. I was Stage 3 in 2000 and, after 2 peripheral stem cell transplants (PSCTs), I am still in remission in 2015 … and with great thanks!
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janner - Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2000
- Age at diagnosis: 47
Re: How healthy were you before your myeloma diagnosis?
Was quite healthy except for slow thyroid. Woke up one morning with slight back pain . Just thought I slept wrong. It kept up and I figured I would mention it to doctor when I went for my 3-month blood work for thyroid. Pain was really bad by then. when she did blood work she wanted it redone because liver numbers were high. Second round of blood work show M spike and she sent me to hematologist. He couldn't believe she picked it up so soon. M spike was only 1400 mg/dL (1.4 g/dL).
Six months of Revlimid / dex / Velcade, was in remission and 4 months after that had harvest, still no transplant . I am still in remission and on Revlimid for 3 years.
Six months of Revlimid / dex / Velcade, was in remission and 4 months after that had harvest, still no transplant . I am still in remission and on Revlimid for 3 years.
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morrow1022
Re: How healthy were you before your myeloma diagnosis?
I had a diagnosed heart condition for 14 years. I was more fatigued than usual for 2 months before a cardiologist decided to run some tests. Anemia. That was my only symptom. Further tests and biopsies, and a second opinion at Mayo Clinic confirmed smoldering multiple myeloma. Could have knocked me over with a feather.
Am now in my 4th cycle of Revlimid and it seems to be working. Numbers have improved greatly. So while I was reasonably healthy for my heart condition, was I really healthy? Hard to say.
Am now in my 4th cycle of Revlimid and it seems to be working. Numbers have improved greatly. So while I was reasonably healthy for my heart condition, was I really healthy? Hard to say.
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Mona Dee - Name: Mona Dee
- Who do you know with myeloma?: self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 59
Re: How healthy were you before your myeloma diagnosis?
i was in good overall health. No infections, no colds, no flu – no real issues except my back. I had a bad back for years! No one could explain it. One time, I had a checkup in 2010 and it included a chest x-ray. The radiologist called me at home and told me to get my spine checked out! He had seen this kind of destruction before. So I was referred to a neurologist and he scheduled an MRI.
Well, I slipped and fell days before the MRI. The neurologist said I broke (compression fractured) my back. He scheduled a biopsy ASAP. He called me on Valentine's Day to tell me I had cancer!
That was in 2011, and by September I had my stem cell transplant and was in complete remission.
But, since then, I've had pneumonia (double) and developed toxicity to my chemo, anemia, transfusions, biopsy of my lung (thought I had a plasmacytoma), and developed breast cancer! Have had stereoptic biopsy of both breasts, lumpectomy, sentinel node removal, radiation is ongoing. But I'm alive and, except for the back pain, I am living a good life.
Well, I slipped and fell days before the MRI. The neurologist said I broke (compression fractured) my back. He scheduled a biopsy ASAP. He called me on Valentine's Day to tell me I had cancer!
That was in 2011, and by September I had my stem cell transplant and was in complete remission.
But, since then, I've had pneumonia (double) and developed toxicity to my chemo, anemia, transfusions, biopsy of my lung (thought I had a plasmacytoma), and developed breast cancer! Have had stereoptic biopsy of both breasts, lumpectomy, sentinel node removal, radiation is ongoing. But I'm alive and, except for the back pain, I am living a good life.
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: How healthy were you before your myeloma diagnosis?
My 56 husband had a very sore left shoulder blade throughout the summer of 2014, maybe even longer. Thought it was a gym injury. Then, in early September, it swelled horribly, and I insisted he go to the ER. Possibility of cancer was mentioned almost immediately after X-ray showed some bone degradation. Initially diagnosed by orthopaedic surgeon as a very easily treated cancer - with radiation as treatment. Luckily was sent to a hematologist. Bone marrow biopsy done and multiple myeloma diagnosis made. Other than arrhythmia and fairly recent diagnosis of sleep apnea, no other existing problems before diagnosis. Looking back, he was sleeping way too much for the past few years - every evening and all night. Thought he was just bored with me!!
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Katie KIrkpatrick
Re: How healthy were you before your myeloma diagnosis?
My husband was in very good health. This was a complete surprise to both of us. He was being treated for some depression only. He had what we thought were normal aches and pains of getting older. It was the chest x-ray they did when he had a case of bronchitis that gave us the first inkling that something was wrong.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: How healthy were you before your myeloma diagnosis?
I literally woke up with a broken back and had no symptoms at all before. I went to 6 different doctors and specialists and nobody knew what was going on. It wasn't until my next door neighbor, a nurse who has known me for about 20 years, saw the pain I was in,(walking with a cane and brace), gave me the phone number for a doctor at the hospital for special surgery that things actually started to happen.
I called and sent them my MRIs. Within the hour, they called back and said they were pretty sure it was cancer and they gave me a doctor's number at MSKCC [Memorial Sloan-Kettering]. I called them the next day and within 48 hours I was diagnosed, had an oncologist assigned to me, and 24 hours after that I had my first chemo shots. It was almost a relief after a month of seeing doctors who gad no idea what was wrong and just kept telling me to let my broken back heal.
By the way, I had 2 discs in my back collapse and ended up getting a kyphoplasty surgery soon afterwards.
I called and sent them my MRIs. Within the hour, they called back and said they were pretty sure it was cancer and they gave me a doctor's number at MSKCC [Memorial Sloan-Kettering]. I called them the next day and within 48 hours I was diagnosed, had an oncologist assigned to me, and 24 hours after that I had my first chemo shots. It was almost a relief after a month of seeing doctors who gad no idea what was wrong and just kept telling me to let my broken back heal.
By the way, I had 2 discs in my back collapse and ended up getting a kyphoplasty surgery soon afterwards.
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SimoneUtecht
Re: How healthy were you before your myeloma diagnosis?
My husband had NO prior symptoms. In Oct 2013 we climbed to the top of Machu Picchu in Peru, we snorkeled and swam in Honduras and climbed to the top of Mayan temple pyramids in Guatemala in Dec 2013.
On January 6, 2014, he went for his normal 10 mile walk. January 7, he came home after 9 miles feeling tired. On January 8, he came home after 6 miles feeling dizzy. January 9, he saw his cardiologist who said it wasn't his heart and ran blood tests. Friday, January 10, he got a call from a hematologist (who also turned out to be an oncologist) to meet him at hospital on Monday morning. January 13 more blood tests and then were called back to hospital to do an immediate BMB and were told results would take 3-4 days.
First thing Wednesday, January 15, we got a call to come to hem/onc's office that afternoon. Before we even left for that visit we got a call from the major cancer hospital 200 miles away that an appointment was set up for us following week. Local doctor said they didn't know what he had but "it's above my pay grade " and we needed the experts.
January 16 got a call from cancer center that he needed to be seen ASAP and come next day, NOT next week. January 17, we drove to cancer center, having no idea of what was wrong, had more labs, saw the doctor, and were told to go have a cup of coffee and come back in an hour.
We returned and doctor said Hubby has primary plasma cell leukemia, very rare and a very very aggressive form of multiple myeloma. Due to severity (we were told he had "weeks"), he needed to start chemo immediately, which he did, and then returned the next 2 days for more chemo and transfusions.
We were sent home to continue chemo locally (later learned that that was a compassionate gesture by the specialist.). He went from feeling fine, no issues at all, to starting chemo in just 10 days.
Thankfully, he saw the right doctors with the knowledge to know what they didn't know but recognized the severity of his situation and acted quickly, which saved his life. Here we are 14 months and 4 induction cycles, two (tandem) SCTs, 2 rounds of consolidation chemo, and now lifetime maintenance, and he's back to walking an hour or more a day, and we're ready to start traveling again.
Life can certainly change in an instant with no warning!
On January 6, 2014, he went for his normal 10 mile walk. January 7, he came home after 9 miles feeling tired. On January 8, he came home after 6 miles feeling dizzy. January 9, he saw his cardiologist who said it wasn't his heart and ran blood tests. Friday, January 10, he got a call from a hematologist (who also turned out to be an oncologist) to meet him at hospital on Monday morning. January 13 more blood tests and then were called back to hospital to do an immediate BMB and were told results would take 3-4 days.
First thing Wednesday, January 15, we got a call to come to hem/onc's office that afternoon. Before we even left for that visit we got a call from the major cancer hospital 200 miles away that an appointment was set up for us following week. Local doctor said they didn't know what he had but "it's above my pay grade " and we needed the experts.
January 16 got a call from cancer center that he needed to be seen ASAP and come next day, NOT next week. January 17, we drove to cancer center, having no idea of what was wrong, had more labs, saw the doctor, and were told to go have a cup of coffee and come back in an hour.
We returned and doctor said Hubby has primary plasma cell leukemia, very rare and a very very aggressive form of multiple myeloma. Due to severity (we were told he had "weeks"), he needed to start chemo immediately, which he did, and then returned the next 2 days for more chemo and transfusions.
We were sent home to continue chemo locally (later learned that that was a compassionate gesture by the specialist.). He went from feeling fine, no issues at all, to starting chemo in just 10 days.
Thankfully, he saw the right doctors with the knowledge to know what they didn't know but recognized the severity of his situation and acted quickly, which saved his life. Here we are 14 months and 4 induction cycles, two (tandem) SCTs, 2 rounds of consolidation chemo, and now lifetime maintenance, and he's back to walking an hour or more a day, and we're ready to start traveling again.
Life can certainly change in an instant with no warning!
Re: How healthy were you before your myeloma diagnosis?
I always thought of myself as being in very good health before my diagnosis. In hindsight, though, I had a couple of issues that may be correlated with multiple myeloma.
I've had allergies since I was a kid, and would usually get a couple of sinus infections each winter. I also had shingles around 2005. And I had low-grade back pain due to two herniated disks dating back to the late 1980's.
But I was active, running regularly (up to 10 miles) and bicycling during the warm weather, including doing some centuries.
In early 2009, my allergist ran a standard series of blood tests on me, which he did every couple of years, as part of monitoring my allergies. Two strange results came back. One indicated hypothyroidism, and I was started on Synthroid.
The second was a high Sed rate. Long story short, that led to referral to a local hematologist / oncologist, and, after the usual tests and a bone marrow biopsy I was diagnosed with MGUS. In 2010, that progressed to smoldering myeloma, and in early 2013 to symptomatic multiple myeloma. In late 2012, I started experiencing low back pain that felt different from my usual back pain, and also some pain in my right shoulder. A PET scan and skeletal survey showed lytic lesions in those areas, as well as in one of my ribs.
In late January 2013 I started treatment - 3 cycles of RVD induction therapy, a SCT, two cycles of RVD consolidation therapy, and Revlimid maintenance since Sept 2013. I've been very fortunate and reached sCR and MRD negative status this past July.
Like so many others, I never, ever would have imagined myself having this disease before getting the MGUS diagnosis in 2009. My Dad and his two brothers all had prostate cancer, so I would not have been surprised to get that. But not this!
I've had allergies since I was a kid, and would usually get a couple of sinus infections each winter. I also had shingles around 2005. And I had low-grade back pain due to two herniated disks dating back to the late 1980's.
But I was active, running regularly (up to 10 miles) and bicycling during the warm weather, including doing some centuries.
In early 2009, my allergist ran a standard series of blood tests on me, which he did every couple of years, as part of monitoring my allergies. Two strange results came back. One indicated hypothyroidism, and I was started on Synthroid.
The second was a high Sed rate. Long story short, that led to referral to a local hematologist / oncologist, and, after the usual tests and a bone marrow biopsy I was diagnosed with MGUS. In 2010, that progressed to smoldering myeloma, and in early 2013 to symptomatic multiple myeloma. In late 2012, I started experiencing low back pain that felt different from my usual back pain, and also some pain in my right shoulder. A PET scan and skeletal survey showed lytic lesions in those areas, as well as in one of my ribs.
In late January 2013 I started treatment - 3 cycles of RVD induction therapy, a SCT, two cycles of RVD consolidation therapy, and Revlimid maintenance since Sept 2013. I've been very fortunate and reached sCR and MRD negative status this past July.
Like so many others, I never, ever would have imagined myself having this disease before getting the MGUS diagnosis in 2009. My Dad and his two brothers all had prostate cancer, so I would not have been surprised to get that. But not this!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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