Hi folks,
I've read through the forums of this site a few times and I've decided to join.
In January of this year, my father had more and more difficulty walking, much pain and numbness in his back and legs; went to the doctor a number of times, did x-rays and blood test etc. nothing of importance came back; the doctor ended up putting him on some bone building medication due to his bone density being less than it should be.
The pains and numbness became worse, the doctor ordered an MRI; my dad had his MRI in late March of this year; he had a plasmacytoma the size of a golf ball in his vertebrae and it was endangering the spinal cord; the same day as the MRI, he was told to report to the hospital; from there he was taken to a trauma centre by ambulance about an hour's drive away.
Two days later he had surgery to remove the neoplasma from his spine and had a vertebroplasty done to one of his vertebrae with two titanium rods added for stability. He was treated with some dex for a few days while the determine if it was multiple myeloma or a solitary plasmacytoma.
At this point there was no elevated calcium, monoclonal proteins or Bence Jones in his blood or urine.
After a week, he was sent home; he started five weeks of radiation in May as the doctor believed it was more likely a solitary plasmacytoma rather than multiple myeloma.
His recent blood test showed higher monoclonal protein levels (I don't know the numbers yet) this past week and the hematologist. now wants to place him on pamidronic acid [Aredia].
Forums
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Although you don't say it, it sounds like your father may be seeing an oncologist, but not a myeloma specialist. Has your father had the full panel of blood tests, 24 hour collection, bone marrow biopsy and possibly a repeat MRI or PET/CT, to do a full work-up for myeloma? All of those tests should be done and it would be advisable for him to get a second opinion from a myeloma specialist.
Hopefully the tumor on his spine was a single plasmacytoma and he hasn't progressed to a more active level of myeloma.
Nancy in Phila
Hopefully the tumor on his spine was a single plasmacytoma and he hasn't progressed to a more active level of myeloma.
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: My story
Hi NSTEWART,
Yea, my dad had the 24h urine collection, full axis x-rays at the trauma centre in the end of March, nothing of concern at that point.
It seems like the view of the trauma centre as to treat it as stage 1 multiple myeloma until proven otherwise, hence the delay in radiation treatment post surgery; they considering if chemo was needed.
He's just had another MRI which did not show anything of concern, however the neurosurgeon wants another MRI (lower down on axis) in a month; I'm not sure about the CT scan; he has so many tests between the two hospitals, he has a come and go parking pass.
My dad's bone marrow biopsy showed negative. However, he does have a very small spot on his spine; they attempted to biopsy it, but it was too small.
He has a hematologist and radiology oncologist and pulmonologist (lungs-found a spot, but not cancerous) at the cancer centre at our local hospital; he has a neurosurgeon at the trauma centre about 60 mi/100 km away; the trauma centre has a special myeloma clinic within its cancer centre0.
We are "lucky" the trauma centre was only 100 km away with nothing but farmland and two medium sized towns in between; It made a nice easy drive on the highway too and from the trauma centre to visit him everyday.
Post radiation, his leg and bone numbness is only somewhat better than before the spine surgery.
We are talking about asking for a second opinion from the trauma centre's myeloma clinic before he considers starting pamedronic acid due to the ONJ risk.
My dad has been granted CPP-D (disability retirement-Canada) by the federal government due to the issues he is suffering.
Yea, my dad had the 24h urine collection, full axis x-rays at the trauma centre in the end of March, nothing of concern at that point.
It seems like the view of the trauma centre as to treat it as stage 1 multiple myeloma until proven otherwise, hence the delay in radiation treatment post surgery; they considering if chemo was needed.
He's just had another MRI which did not show anything of concern, however the neurosurgeon wants another MRI (lower down on axis) in a month; I'm not sure about the CT scan; he has so many tests between the two hospitals, he has a come and go parking pass.
My dad's bone marrow biopsy showed negative. However, he does have a very small spot on his spine; they attempted to biopsy it, but it was too small.
He has a hematologist and radiology oncologist and pulmonologist (lungs-found a spot, but not cancerous) at the cancer centre at our local hospital; he has a neurosurgeon at the trauma centre about 60 mi/100 km away; the trauma centre has a special myeloma clinic within its cancer centre0.
We are "lucky" the trauma centre was only 100 km away with nothing but farmland and two medium sized towns in between; It made a nice easy drive on the highway too and from the trauma centre to visit him everyday.
Post radiation, his leg and bone numbness is only somewhat better than before the spine surgery.
We are talking about asking for a second opinion from the trauma centre's myeloma clinic before he considers starting pamedronic acid due to the ONJ risk.
My dad has been granted CPP-D (disability retirement-Canada) by the federal government due to the issues he is suffering.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
I've just confirmed with my dad that he has had CAT scans done at the hospital.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Well, the local hemo and rad. oncologist are sending my dad to Princess Margaret in Toronto (about 70 miles away) for follow up, as they believe they can better serve him with some direction and input from Princess Margaret.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
In a person who had been treated for a solitary bone plasmacytoma (SBP), how often should a doctor be ordering the typical 24-hour urine test? Or is serum protein electrophoresis a better test?
Does a serum protein electrophoresis always include a serum free light chain assay, or are they two different tests?
Early in this upcoming week, I will be going with my dad to see the myeloma specialist in Toronto; I am quite anxious to find out what his monoclonal protein (M-spike) numbers were during his last blood test, the results of which prompted the local hematologist to request an appointment with the myeloma specialist.
Does a serum protein electrophoresis always include a serum free light chain assay, or are they two different tests?
Early in this upcoming week, I will be going with my dad to see the myeloma specialist in Toronto; I am quite anxious to find out what his monoclonal protein (M-spike) numbers were during his last blood test, the results of which prompted the local hematologist to request an appointment with the myeloma specialist.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Well, not the greatest of news; we went to Princess Margaret Cancer Centre; the myeloma specialist did not like the spot on my dad's ribs and was concerned about is kappa / lambda ratio and free light chain results.
There was some talk of CyBorD (cyclophosphamide, Velcade, dexamethasone) treatment and possibly, a stem-cell transplant.
There was some talk of CyBorD (cyclophosphamide, Velcade, dexamethasone) treatment and possibly, a stem-cell transplant.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Hi LM,
I'm sorry to hear the news about your father. I was worried this might happen by some of the things you said here and in other recent postings you had made in the forum. It seemed like your father's disease was progressing.
How often has your father's M-spike and free light chains been tested, and do the results indicate either an upward trend, or more like a sudden jump up recently (or perhaps something completely different)?
You'll see different opinions here in the forum about the importance of 24-hour urine tests. Blood tests tend to give a very thorough picture, but I think the doctors who like the urine tests do so because it gives some extra insight into what is going on with a patient's kidneys.
If your father does have to go on to CyBorD as a treatment, you can rest assured that it's one of the most commonly used treatments for myeloma. Most people respond to it, and some achieve deep responses.
I'm sure I don't have to tell you that the role of stem cell transplantation in upfront therapy is somewhat controversial these days. I believe it's rather standard in Canada for patients who qualify, and your father's age may play a role in whether you want to go ahead with a transplant now, or defer one until later. If your father is just barely old enough to do a transplant according to standard practice in Canada, then it may be worth doing it now, while he still qualifies, rather than delaying and then not having the option later.
If, on the other hand, eligibility for transplants is not heavily dependent on age where you are, the decision may be more difficult, and could depend on how your father responds to treatment.
Best wishes to you and your father,
Cheryl
I'm sorry to hear the news about your father. I was worried this might happen by some of the things you said here and in other recent postings you had made in the forum. It seemed like your father's disease was progressing.
How often has your father's M-spike and free light chains been tested, and do the results indicate either an upward trend, or more like a sudden jump up recently (or perhaps something completely different)?
You'll see different opinions here in the forum about the importance of 24-hour urine tests. Blood tests tend to give a very thorough picture, but I think the doctors who like the urine tests do so because it gives some extra insight into what is going on with a patient's kidneys.
If your father does have to go on to CyBorD as a treatment, you can rest assured that it's one of the most commonly used treatments for myeloma. Most people respond to it, and some achieve deep responses.
I'm sure I don't have to tell you that the role of stem cell transplantation in upfront therapy is somewhat controversial these days. I believe it's rather standard in Canada for patients who qualify, and your father's age may play a role in whether you want to go ahead with a transplant now, or defer one until later. If your father is just barely old enough to do a transplant according to standard practice in Canada, then it may be worth doing it now, while he still qualifies, rather than delaying and then not having the option later.
If, on the other hand, eligibility for transplants is not heavily dependent on age where you are, the decision may be more difficult, and could depend on how your father responds to treatment.
Best wishes to you and your father,
Cheryl
Re: My story
Thanks Cheryl,
I'd say he does a blood test once every three or four weeks on average; as soon as the hemo at the cancer centre referred him to the myeloma program at PMCC in Toronto, I had that feeling that it was more than a SBP.
I don't know how often he does the 24-hour urine test, there are times he just gets sick about talking anymore about SBP / multiple myeloma and wants to talk about anything else.
It would appear that kappa / lambda ratio has moved into the concern ratio (2.5) just in his last test.
My father is 58. The multiple myeloma doctor said they like to try a stem cell transplant as he is under 70 years old.
I'd say he does a blood test once every three or four weeks on average; as soon as the hemo at the cancer centre referred him to the myeloma program at PMCC in Toronto, I had that feeling that it was more than a SBP.
I don't know how often he does the 24-hour urine test, there are times he just gets sick about talking anymore about SBP / multiple myeloma and wants to talk about anything else.
It would appear that kappa / lambda ratio has moved into the concern ratio (2.5) just in his last test.
My father is 58. The multiple myeloma doctor said they like to try a stem cell transplant as he is under 70 years old.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Hi LM,
Good to know that you got results from the myeloma specialist at the Princess Margaret Hospital. Sounds like your father will be encouraged to get treatment too.
I was 58 when I was diagnosed with multiple myeloma and was treated with Velcade / dex. At that time, Revlimid was not yet approved in Canada, and I think (not sure tho) it may not be approved for first line treatment yet. Thus, we would be treated with a single novel agent (Velcade), plus dex, and in his case cyclophosphamide. I was very fortunate in that the Velcade / dex worked really well for me. I didn't take any cyclophosphamide until I was being prepped for stem cell harvest, about six months later.
Please keep us posted and best wishes to your father. I hope that he responds really well to treatments.
As far as the 24-hour urine tests go, it depends on your doctor as to how frequently you would have those tests. I had them at first, to confirm the diagnosis, and as Cheryl says, probably to check on kidney function. I had another one recently, which turned out to mirror the serum free light chain (sFLC) tests.
I read the Beacon daily, and talk with friends in my support group, so try to be aware of what to ask my oncologist about at appointments.
Also went thru a stem cell transplant, and then a year of low dose Revlimid (which had literally just been approved here) for consolidation treatment, which helped too. I got into a remission which lasted approximately four years, so was pleased with that result. I have had very good treatment in our health care system. My main concern now is that we need to get the newer drugs for myeloma approved here. I hope that happens soon!
Good to know that you got results from the myeloma specialist at the Princess Margaret Hospital. Sounds like your father will be encouraged to get treatment too.
I was 58 when I was diagnosed with multiple myeloma and was treated with Velcade / dex. At that time, Revlimid was not yet approved in Canada, and I think (not sure tho) it may not be approved for first line treatment yet. Thus, we would be treated with a single novel agent (Velcade), plus dex, and in his case cyclophosphamide. I was very fortunate in that the Velcade / dex worked really well for me. I didn't take any cyclophosphamide until I was being prepped for stem cell harvest, about six months later.
Please keep us posted and best wishes to your father. I hope that he responds really well to treatments.
As far as the 24-hour urine tests go, it depends on your doctor as to how frequently you would have those tests. I had them at first, to confirm the diagnosis, and as Cheryl says, probably to check on kidney function. I had another one recently, which turned out to mirror the serum free light chain (sFLC) tests.
I read the Beacon daily, and talk with friends in my support group, so try to be aware of what to ask my oncologist about at appointments.
Also went thru a stem cell transplant, and then a year of low dose Revlimid (which had literally just been approved here) for consolidation treatment, which helped too. I got into a remission which lasted approximately four years, so was pleased with that result. I have had very good treatment in our health care system. My main concern now is that we need to get the newer drugs for myeloma approved here. I hope that happens soon!
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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
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