Not necessarily bad news...
I went with my dad to his appointment with his local hemo; she still does not know for certain if it is plasmactyoma situation versus multiple myeloma.
His numbers are generally good, no renal or calcium issues, no M-spike; kappa lambda ratio is 2.55 but neither the kappa and lambda numbers are very high; she believes there are some free light chains at play here, but she is not ordering the start of CyBorD at this time; she will be discussing my dad's case with the multiple myeloma specialist at Princess Marg. and has ordered monthly blood tests and bi-monthly appointments with my dad as long as his situation stays the same.
She did not believe my dad's free light chain levels were high enough to cause the neuropathy in legs and believed it to be from the plasmacytoma damage done to his spinal code.
The spot on my dad's rib was caught by CT scan when scanning for proper instrument placement for a test (not sure if it was a bone marrow biopsy or asperation) and was very faint; thy will do further investigation and are asking the Ministry of Health permission (to cover cost) of a PET scan.
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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
Actually, that sounds like some rather good news, LM.
You said your father doesn't have an M-spike. Is that really the case? I thought you mentioned somewhere earlier in the thread that your father has an M-spike.
Am I correct that your father never had any radiation for the plasmacytoma that he had? In skimming back over the postings in this thread, it seems like he had surgery to remove the plasmacytoma, and then some vertebroplasty to stabilize the spine, but no radiation. Is that correct?
Has your father ever had a bone marrow biopsy to see what sort of plasma cell percentage he has? That would seem to me to be an important bit of data at this point.
In any case, I hope you continue to get "not necessarily bad" news...
You said your father doesn't have an M-spike. Is that really the case? I thought you mentioned somewhere earlier in the thread that your father has an M-spike.
Am I correct that your father never had any radiation for the plasmacytoma that he had? In skimming back over the postings in this thread, it seems like he had surgery to remove the plasmacytoma, and then some vertebroplasty to stabilize the spine, but no radiation. Is that correct?
Has your father ever had a bone marrow biopsy to see what sort of plasma cell percentage he has? That would seem to me to be an important bit of data at this point.
In any case, I hope you continue to get "not necessarily bad" news...
Re: My story
Hi Cheryl,
No, he has no M-spike, the discussion on this thread about m-spike was me saying on page 2
"I am confused, can one also have a M-spike and FLC findings, or is it one or the other?"
Radiation, yes-my dad had five weeks of radiation for the plasmacytom post-surgery; the first half without any real side effects.
So, needless to say, I was disappointed with today's appointment.
No, he has no M-spike, the discussion on this thread about m-spike was me saying on page 2
"I am confused, can one also have a M-spike and FLC findings, or is it one or the other?"
Radiation, yes-my dad had five weeks of radiation for the plasmacytom post-surgery; the first half without any real side effects.
So, needless to say, I was disappointed with today's appointment.
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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 guess I assumed from this statement in your first posting in this thread,
"His recent blood test showed higher monoclonal protein levels"
that your father has an M-spike, since the M-spike is the only test that really estimates how much monoclonal protein a person has in their blood or urine. Granted, when free light chains are really elevated, most of them are monoclonal as well, but the free light chain test measures all free light chains, monoclonal and polyclonal. So I thought your father must have an M-spike when you said his monoclonal protein was now higher.
I guess I'm also confused why you now say you're disappointed, when earlier today you wrote that the news was not necessarily so bad, and even earlier you had been expecting that your father would have to start treatment soon.
Based on your appointment today, it looks like your father may not have progressed to multiple myeloma, which I would think is good news, rather than disappointing news. Apparently I misinterpreted your reaction or your expectations, and I'm sorry that I did.
I guess I assumed from this statement in your first posting in this thread,
"His recent blood test showed higher monoclonal protein levels"
that your father has an M-spike, since the M-spike is the only test that really estimates how much monoclonal protein a person has in their blood or urine. Granted, when free light chains are really elevated, most of them are monoclonal as well, but the free light chain test measures all free light chains, monoclonal and polyclonal. So I thought your father must have an M-spike when you said his monoclonal protein was now higher.
I guess I'm also confused why you now say you're disappointed, when earlier today you wrote that the news was not necessarily so bad, and even earlier you had been expecting that your father would have to start treatment soon.
Based on your appointment today, it looks like your father may not have progressed to multiple myeloma, which I would think is good news, rather than disappointing news. Apparently I misinterpreted your reaction or your expectations, and I'm sorry that I did.
Re: My story
Nah, correction; needless to say I am not disappointed with today's appointment; I am somewhat relieved.
I re-read my first post, and did notice the M-spike comment; at the time, my parents didn't understand the difference between an M-spike and above-normal kappa/lambda results / abnormal free light chain protein when I was asking them questions; this is part of the reason I went to the appointment today as well as the one with the multiple myeloma specialist a month ago.
I re-read my first post, and did notice the M-spike comment; at the time, my parents didn't understand the difference between an M-spike and above-normal kappa/lambda results / abnormal free light chain protein when I was asking them questions; this is part of the reason I went to the appointment today as well as the one with the multiple myeloma specialist a month ago.
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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
The leg numbness and pain is still everpresent. I'm wondering whether physiotherapy and light exercise in a warm pool would help my dad. He had some physio when he was released from the hospital (Ministry of Health physiotherapist came over to work with him a little).
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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 Little Monkey,
I'm very new at this on this forum, and certainly not a doctor! There is a drug called Lyrica (pregabalin) that is suppose to help with nerve damage. Have you or your father discussed this with your doctors?
T
I'm very new at this on this forum, and certainly not a doctor! There is a drug called Lyrica (pregabalin) that is suppose to help with nerve damage. Have you or your father discussed this with your doctors?
T
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T-wife - Name: T-wife
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 68
Re: My story
Hi T-wife,
My dad and I discussed Lyrica a few weeks ago between us. There was one particular side effect (it escapes me right now) we discussed and left it at that. Maybe I will suggest my dad bring it up with his pain specialist next time he seems him.
My dad and I discussed Lyrica a few weeks ago between us. There was one particular side effect (it escapes me right now) we discussed and left it at that. Maybe I will suggest my dad bring it up with his pain specialist next time he seems him.
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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 two marks which were suspected as being possible additional lesions on his vertebrae turned out to be screws from the titanium supports in his back; some good news.
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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
That sounds like very good news, LM. I haven't been following all the details of your father's case closely. However, from what I have been able to pick up, it sounds more and more like he has NOT progressed to having multiple myeloma. The one thing that seems to be sending up a yellow (not red) flag is his abnormal free light chain ratio, but I really think a specialist will know better how to interpret that. Perhaps its an artifact of his radiation treatment?
Of course, there's also the issue of the numbness in his legs. Maybe it's due to something completely unrelated.
In any case, good luck, and keep us posted on how things develop.
Of course, there's also the issue of the numbness in his legs. Maybe it's due to something completely unrelated.
In any case, good luck, and keep us posted on how things develop.
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JimNY
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