My mom had been going to the doctor for three years with back pain, but he said it was just older age. No xr-ays or other tests were done. I finally made my mom go to the emergency room (ER), where they found myeloma damage all over her : /
Is this normal not to have caught it for years?
Forums
Re: Time from first symptoms to multiple myeloma diagnosis?
I was diagnosed with CLL in 2001 and started seeing a hematologist in 2007 when my white cells began rising faster. I was seeing him every 6 months and it was during one of these visits that my multiple myeloma was discovered.
The thing is I saw some signs about 3 months prior, didn't know what they meant, and a few days before my appointment I knew something wasn't right. I was sent directly to the hospital from that appointment because of my creatinine and anemia. I'm sure that my multiple myeloma surged in a 3 or 4 month period.
The thing is I saw some signs about 3 months prior, didn't know what they meant, and a few days before my appointment I knew something wasn't right. I was sent directly to the hospital from that appointment because of my creatinine and anemia. I'm sure that my multiple myeloma surged in a 3 or 4 month period.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Time from first symptoms to multiple myeloma diagnosis?
I've thought about this from time to time; my own multiple myeloma was caught because I was slightly anemic, and my primary care doc was used to me. Since I had a really bad experience with anemia being misdiagnosed as depression, and thus I was medicated up the yahoo for something that could have been cured with iron pills ... nevermind, long story, still bitter about it Anyway, my doc saw that I was getting anemic so she sent me for a full work up immediately to find out why.
That's when I found out I was in Stage II multiple myeloma. Because of my doc (and my own paranoia), we found it before it had done much, if any, bone or organ damage.
On the other hand, my new oncologist said that I had 'probably had this for years,' as in, I probably had dealt with the MGUS, then probably smoldering, until the proliferation of the multiple myeloma cells in my bone marrow finally started causing the anemia.
Multiple myeloma may be the most common cancer of the blood / bone marrow apart from leukemia, but that doesn't make it common. In fact, in terms of the old medical saw about thinking horses, not zebras when you hear hoofbeats, multiple myeloma is a pretty lonely zebra.
My lifetime's supply of good luck was saved up and used on the day my doc said, "Huh, I wonder why she's getting anemic?"
But with things like back pain – which evidently is around the third most common reason for going to see a doctor – most docs are going to look for horses, and most of the time they are right.
The problem, of course, is that this is not comforting, or helpful, when you go misdiagnosed or undiagnosed, for far too long. The answer to your question, ultimately, is we can't know. Certainly I could have had MGUS and / or smoldering multiple myeloma for decades; there's no way to tell.
That's when I found out I was in Stage II multiple myeloma. Because of my doc (and my own paranoia), we found it before it had done much, if any, bone or organ damage.
On the other hand, my new oncologist said that I had 'probably had this for years,' as in, I probably had dealt with the MGUS, then probably smoldering, until the proliferation of the multiple myeloma cells in my bone marrow finally started causing the anemia.
Multiple myeloma may be the most common cancer of the blood / bone marrow apart from leukemia, but that doesn't make it common. In fact, in terms of the old medical saw about thinking horses, not zebras when you hear hoofbeats, multiple myeloma is a pretty lonely zebra.
My lifetime's supply of good luck was saved up and used on the day my doc said, "Huh, I wonder why she's getting anemic?"
But with things like back pain – which evidently is around the third most common reason for going to see a doctor – most docs are going to look for horses, and most of the time they are right.
The problem, of course, is that this is not comforting, or helpful, when you go misdiagnosed or undiagnosed, for far too long. The answer to your question, ultimately, is we can't know. Certainly I could have had MGUS and / or smoldering multiple myeloma for decades; there's no way to tell.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Time from first symptoms to multiple myeloma diagnosis?
It took EJ a number of years to get diagnosed, in part because nothing unusual was showing up in the blood work from his yearly physical, and in part because of how he was describing the rib pain he was having to the doctors.
He plays volleyball very competitively and assumed that the pain was a combination of growing older and diving for balls! So he got sent to a sports medicine / massage therapist. As she was working on what we now know was a plasmacytoma, she kept telling him that his rib felt like it was "out of line." ... Whatever that means. It wasn't til he went to the emergency room for a ruptured diverticuliti that they found the multiple myeloma.
Lyn
He plays volleyball very competitively and assumed that the pain was a combination of growing older and diving for balls! So he got sent to a sports medicine / massage therapist. As she was working on what we now know was a plasmacytoma, she kept telling him that his rib felt like it was "out of line." ... Whatever that means. It wasn't til he went to the emergency room for a ruptured diverticuliti that they found the multiple myeloma.
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
Re: Time from first symptoms to multiple myeloma diagnosis?
Unfortunately, most of us don't know how long we had it before it was diagnosed.
When I was diagnosed the only sign was slight anemia. At diagnosis I had an M-spike of 4.1 and 80% involvement in my bone marrow. With numbers as high as those, I'm guessing I had it for at least 1-2 years beforehand. I had been having an increasing number of headaches and nosebleeds for the previous 1-2 years, so I'm guessing that those were early signs of my multiple myeloma.
I had a hernia operation about 4-5 months before I was diagnosed and about a month afterwards had random lumps/bruises on my body. As mysteriously as I got those, they went away on their own. I still have no clue what caused those, but am guessing they were also related to my multiple myeloma.
Many of us can look back after we're diagnosed and see symptoms that could have been early signs, but we will never really know for sure when/if we actually got multiple myeloma.
When I was diagnosed the only sign was slight anemia. At diagnosis I had an M-spike of 4.1 and 80% involvement in my bone marrow. With numbers as high as those, I'm guessing I had it for at least 1-2 years beforehand. I had been having an increasing number of headaches and nosebleeds for the previous 1-2 years, so I'm guessing that those were early signs of my multiple myeloma.
I had a hernia operation about 4-5 months before I was diagnosed and about a month afterwards had random lumps/bruises on my body. As mysteriously as I got those, they went away on their own. I still have no clue what caused those, but am guessing they were also related to my multiple myeloma.
Many of us can look back after we're diagnosed and see symptoms that could have been early signs, but we will never really know for sure when/if we actually got multiple myeloma.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Time from first symptoms to multiple myeloma diagnosis?
In 2011, I went to my doctor to get some blood work done on a potential bleeding issue (I'd had some oral surgery, it was difficult to control post-operative bleeding, and my oral surgeon suggested I get it checked). The clotting times came back normal but I was a bit anemic and I had a very high level of calcium.
The doctor I had at the time pondered that a bit and then decided this was due to a vitamin D deficiency. He told me to take a supplement and sent me on my way.
A year later, I started in with a new doctor. About that time, my mother was diagnosed with a mild form of hemophilia, so I asked him to check on this. He ran some blood tests and although he didn't seem to think there was a problem involving bleeding, he referred me to a hematologist. (In retrospect, I wonder if he noticed the calcium and anemia issues and suspected myeloma.) Of course, the hematologist picked up on it immediately and I was diagnosed via bone marrow biopsy within a week.
So the upshot is that I'm pretty sure I had active myeloma for well over a year prior to my diagnosis. I'm fortunate that I didn't run into severe bone or kidney issues during that time.
The doctor I had at the time pondered that a bit and then decided this was due to a vitamin D deficiency. He told me to take a supplement and sent me on my way.
A year later, I started in with a new doctor. About that time, my mother was diagnosed with a mild form of hemophilia, so I asked him to check on this. He ran some blood tests and although he didn't seem to think there was a problem involving bleeding, he referred me to a hematologist. (In retrospect, I wonder if he noticed the calcium and anemia issues and suspected myeloma.) Of course, the hematologist picked up on it immediately and I was diagnosed via bone marrow biopsy within a week.
So the upshot is that I'm pretty sure I had active myeloma for well over a year prior to my diagnosis. I'm fortunate that I didn't run into severe bone or kidney issues during that time.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Time from first symptoms to multiple myeloma diagnosis?
Over two years of complaining of chronic back pain to no less than four GPs at two different clinics before a fifth called for an X-ray on my first visit. The X-ray raised alarm bells and a CT provided an initial indication of multiple myeloma, the specialists I was referred to took a while longer to believe what my new GP had already worked out, believing metastatic bone cancer was more likely etc. before I was finally referred to a haematologist and a myeloma team.
That was the beginning of February this year with my T4 vertebra disintegrating (fortunately with the exception of the cord sheath) on the 11th of March leaving me in constant pain and possibly permanently disabled. I am bitter as an x-ray ordered earlier could have saved the vertebra, the pain and a lot of the financial difficulties due to my resulting disability (and a financial company's unconscionable behaviour in relation to my insurance).
Anyway three rounds of VCD later I appear to be in remission and am currently going through stem cell collection prior to a SCT so all is looking good.
That was the beginning of February this year with my T4 vertebra disintegrating (fortunately with the exception of the cord sheath) on the 11th of March leaving me in constant pain and possibly permanently disabled. I am bitter as an x-ray ordered earlier could have saved the vertebra, the pain and a lot of the financial difficulties due to my resulting disability (and a financial company's unconscionable behaviour in relation to my insurance).
Anyway three rounds of VCD later I appear to be in remission and am currently going through stem cell collection prior to a SCT so all is looking good.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Time from first symptoms to multiple myeloma diagnosis?
I served in the military and retired in 2010. I noticed at the end of my career that I had slowed down and had aches and pains, but attributed this to the aging process. I was 45 and faced the transition to my new life by finding a job and enjoying life.
I was not as active and naturally gained a few pounds but again thought of the natural aging process and it's effect. I kept saying to myself, I'll start an exercise program and I'll be right as rain. My back hurt as it always had, but then my ribs began to ache. I kept thinking the aging process was kicking in and never thought to seek a medical opinion.
One day at age 48 I lifted a box and turned. The pain was more than I had ever felt and I thought, oh this will go away with rest. 3 months later I was told I had multiple myeloma. Treatment has gotten me to remission and an ASCT will hopefully keep me there. I lost 5 inches of height and don't know my future as it relates to living an active lifestyle. I'm staying positive, but the question still resonates in my mind as to how long I had my condition. I've asked my doctors but have not received a firm answer.
I'm 49.
Kully
I was not as active and naturally gained a few pounds but again thought of the natural aging process and it's effect. I kept saying to myself, I'll start an exercise program and I'll be right as rain. My back hurt as it always had, but then my ribs began to ache. I kept thinking the aging process was kicking in and never thought to seek a medical opinion.
One day at age 48 I lifted a box and turned. The pain was more than I had ever felt and I thought, oh this will go away with rest. 3 months later I was told I had multiple myeloma. Treatment has gotten me to remission and an ASCT will hopefully keep me there. I lost 5 inches of height and don't know my future as it relates to living an active lifestyle. I'm staying positive, but the question still resonates in my mind as to how long I had my condition. I've asked my doctors but have not received a firm answer.
I'm 49.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Time from first symptoms to multiple myeloma diagnosis?
It took me quite a while to get diagnosed also, and I am quite sure I had myeloma for a long time, according to the amount of bone lytic lesions I had, and still have! Luckily for me, it was still caught in time for effective treatment. But I really think that effective screening for multiple myeloma would be nice to have as part of a routine annual physical medical check up.
Some people are tested for 'albumin' in their blood, but that is not always the way it is found if a patient is 'non secretory'. So just as patients go through screening for the more well known and prevalent cancers such as skin cancer, prostate, breast and more, I think we patients should be advocating for better screening for myeloma. It's a ' pet peeve' for me, and I expect to be working on this more later this year with my support group! Of course, the assumption is made that patients are getting routine annual physical check ups also, to get screened for diseases.
The medical profession is composed of really well meaning people, but myeloma is a rare disease, comprising only 1% of cancer diagnoses, and is not always well known to health care professionals.
Some people are tested for 'albumin' in their blood, but that is not always the way it is found if a patient is 'non secretory'. So just as patients go through screening for the more well known and prevalent cancers such as skin cancer, prostate, breast and more, I think we patients should be advocating for better screening for myeloma. It's a ' pet peeve' for me, and I expect to be working on this more later this year with my support group! Of course, the assumption is made that patients are getting routine annual physical check ups also, to get screened for diseases.
The medical profession is composed of really well meaning people, but myeloma is a rare disease, comprising only 1% of cancer diagnoses, and is not always well known to health care professionals.
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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: Time from first symptoms to multiple myeloma diagnosis?
It's hard to know how long I might have had this. At a routine physical in 2011 I had low neutrophils and slightly high lymphocytes, but everything else looked normal. The doctor seemed unconcerned about that, so I didn't think much about it. I was otherwise very healthy.
I had a bout with hip pain that made it difficult to walk for a while so I went to a chiropractor. That got better after 3 or 4 months. This past summer I noticed that I was getting weaker and, like many here, attributed it to aging and thought I just needed to pump more iron and I would get strong. Especially as an older woman, it's hard to tell what annoying symptoms might be caused by menopause.
My husband retired and I knew we would have to switch doctors at the end of 2013, so I went in for one last complete physical. I also thought it was a good idea since I was turning 60 and because of those low neutrophils on the last test. This time I was slightly anemic as well. The doctor thought it might be pernicious anemia due to inability to absorb vitamin B12. So I started taking supplements. When that didn't work, he said we would have to start looking for other reasons, but by then it was 2014 and I had to find a new doctor.
In the meantime in an effort to get stronger I decided to sign up for boot camp. They had me do simple range of motion tests to asses my ability and the next day I couldn't turn over in bed. I tried the chiropractor again which only made things worse, then physical therapy which seemed to help but then got worse again. Finally I had an Xray which showed a wedge fracture of indeterminable age at T11 and anomalies in the lumbar spine. I was sent to an orthopedic surgeon who called those anomalies compression fractures and told me they couldn't do anything for me. We were thinking I could have a vertebroplasty.
Then the doctor agreed to the bone density test I wanted earlier. Osteoporosis in the spine was the diagnosis. The new blood tests came back and WBC, hemoglobin and platelets were low. He sent me to a hematologist/oncologist. I had also been losing weight. I plugged in all my symptoms in a google search and multiple myeloma kept coming up. Everyone thought I was a hypochondriac. The bone marrow confirmed the diagnosis. It would have been nice to know before I had bone damage, but I don't think there were really any symptoms except the low neutrophils to look at before that process began.
From the physical in 2013 November 5 until dx on March 28, 2014 is how long it took for me to get diagnosed.
I had a bout with hip pain that made it difficult to walk for a while so I went to a chiropractor. That got better after 3 or 4 months. This past summer I noticed that I was getting weaker and, like many here, attributed it to aging and thought I just needed to pump more iron and I would get strong. Especially as an older woman, it's hard to tell what annoying symptoms might be caused by menopause.
My husband retired and I knew we would have to switch doctors at the end of 2013, so I went in for one last complete physical. I also thought it was a good idea since I was turning 60 and because of those low neutrophils on the last test. This time I was slightly anemic as well. The doctor thought it might be pernicious anemia due to inability to absorb vitamin B12. So I started taking supplements. When that didn't work, he said we would have to start looking for other reasons, but by then it was 2014 and I had to find a new doctor.
In the meantime in an effort to get stronger I decided to sign up for boot camp. They had me do simple range of motion tests to asses my ability and the next day I couldn't turn over in bed. I tried the chiropractor again which only made things worse, then physical therapy which seemed to help but then got worse again. Finally I had an Xray which showed a wedge fracture of indeterminable age at T11 and anomalies in the lumbar spine. I was sent to an orthopedic surgeon who called those anomalies compression fractures and told me they couldn't do anything for me. We were thinking I could have a vertebroplasty.
Then the doctor agreed to the bone density test I wanted earlier. Osteoporosis in the spine was the diagnosis. The new blood tests came back and WBC, hemoglobin and platelets were low. He sent me to a hematologist/oncologist. I had also been losing weight. I plugged in all my symptoms in a google search and multiple myeloma kept coming up. Everyone thought I was a hypochondriac. The bone marrow confirmed the diagnosis. It would have been nice to know before I had bone damage, but I don't think there were really any symptoms except the low neutrophils to look at before that process began.
From the physical in 2013 November 5 until dx on March 28, 2014 is how long it took for me to get diagnosed.
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PegBb54
25 posts
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