Hi,
Someone asked me to post my lab results. Perhaps y'all can shed some light on this.
When I was diagnosed in 2013, my kappa and lambda light chains were well within the normal range, and the ratio was 0.5, and this remained true throughout my early treatment and bone marrow transplant.
Gradually my kappa started going up. Just a little high. And they just gradually, very gradually, continued up.
Last year in April they quit messin' around and trading 'normal readings;"
Kappa: 41, Lambda: 30, Ratio: 1.4
I was rechecked every other month through the summer and fall, until in October I got:
Kappa 52, Lambda: 38, Ratio: 1.4
The doctor started checking every month, then, and the kappa / lambda / ratio numbers went like this:
Kappa: 37, 65, 69, 61, 72, 71, 70
Lambda: 27, 43, 43, 39, 46, 40, 46
Ratio: 1.4, 1.5,1.6,1.6, 1.6, 1.8,1.5
Two things: I have the P17 deletion, and I WAS overdoing the IgG when diagnosed, with the other two way down.
Now the IgG is normal, the IgA is high, and the last one, I forget, is low.
I don't think I'm in a whole lot of trouble, yet. I hope. Though that 1.8 seemed to ring the doctor's alarm bell enough for him to call me about it.
What I'm seeing here, though, is a trend in the wrong direction. That's what prompted the question. Just how aggressive should I be, with this?
Forums
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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: Indolent vs aggressive relapse: what's the difference?
You may want to look at the new Mayo Clinic Guidelines on treatment after relapse that Multibilly posted about in this thread:
"New Mayo treatment guidelines for relapsed myeloma" (started March 19, 2017)
"New Mayo treatment guidelines for relapsed myeloma" (started March 19, 2017)
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Indolent vs aggressive relapse: what's the difference?
Ron,
Your situation sounds like mine. I was diagnosed with light chain myeloma (no M-spike). Since being on the monoclonal antibody Empliciti (elotuzumab), I started showing an IgG kappa antibody in immunofixation, but M-spike was always "below scanner resolution". This month, for the first time, I have a measurable M-spike of 0.06 g/dL. I know that's tiny, but it's there. I'm hoping it's just from the Empliciti, which can interfere with SPEP (M-spike measurement).
Your situation sounds like mine. I was diagnosed with light chain myeloma (no M-spike). Since being on the monoclonal antibody Empliciti (elotuzumab), I started showing an IgG kappa antibody in immunofixation, but M-spike was always "below scanner resolution". This month, for the first time, I have a measurable M-spike of 0.06 g/dL. I know that's tiny, but it's there. I'm hoping it's just from the Empliciti, which can interfere with SPEP (M-spike measurement).
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Janet1520
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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: Indolent vs aggressive relapse: what's the difference?
Oh, help.
I have one doctor who has gone off like a rocket, which is a surprise because until now he has been a very 'laid back' sort of 'wait until the numbers go a lot higher and then we'll think about it' sort of guy.
HE sees "new suboccipital calvarial soft tissue lesion measuring 3.7 x 2.2 x 2.2 cm most compatible with a plasmacytoma ... there is erosion of the right inner table within this region" and another small plasmacytoma on the sixth rib, and he's got me starting on Pomalyst, dexamethasone and Kyprolis next Tuesday (it would have been this week, but I put my foot down; my son is getting married on Saturday, for crying out loud!)
Bone marrow biopsy on Monday, getting a port put in as soon as they can get me scheduled for one, going on Zometa. I feel like I've been hit by a freight train. He's calling this a relapse.
However, my other doctor, who I'm seeing tomorrow, says that I am not progressing. My "myeloma is under control, based upon [my] M-protein."
The next email from him said that I need a complete work up and based on that, should change treatments and consider a second transplant.
Things are going too fast here. Advice? Help? It's true; my blood work is fine, but there is that hole in my head.
I have one doctor who has gone off like a rocket, which is a surprise because until now he has been a very 'laid back' sort of 'wait until the numbers go a lot higher and then we'll think about it' sort of guy.
HE sees "new suboccipital calvarial soft tissue lesion measuring 3.7 x 2.2 x 2.2 cm most compatible with a plasmacytoma ... there is erosion of the right inner table within this region" and another small plasmacytoma on the sixth rib, and he's got me starting on Pomalyst, dexamethasone and Kyprolis next Tuesday (it would have been this week, but I put my foot down; my son is getting married on Saturday, for crying out loud!)
Bone marrow biopsy on Monday, getting a port put in as soon as they can get me scheduled for one, going on Zometa. I feel like I've been hit by a freight train. He's calling this a relapse.
However, my other doctor, who I'm seeing tomorrow, says that I am not progressing. My "myeloma is under control, based upon [my] M-protein."
The next email from him said that I need a complete work up and based on that, should change treatments and consider a second transplant.
Things are going too fast here. Advice? Help? It's true; my blood work is fine, but there is that hole in my head.
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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: Indolent vs aggressive relapse: what's the difference?
Dianaiad:
Dealing with this disease is hard enough without your doctors be so contradictory. It sounds like you value both of their opinions, I guess my question is: Is one of them a myeloma specialist?
From my personal perspective ONLY, I would be very concerned if I had a new relatively large lesion (plasmacytoma) on my skull, and not be inclined to ignore it just because my M-spike was normal. When I was diagnosed, I had multiple lesions (on my skull, and all over my body actually), and absolutely no M-spike. I believe that I have read that myeloma can change, especially after a transplant. (Hopefully someone a lot smarter than me can give you more info.)
My opinion only: It's better to be safe and treat it, than sorry, and let it get out of control. Most importantly, try not to worry about it until after your son's wedding.
Wishing you all the very best, and hope that you can truly enjoy the wedding.
Kathleen
Dealing with this disease is hard enough without your doctors be so contradictory. It sounds like you value both of their opinions, I guess my question is: Is one of them a myeloma specialist?
From my personal perspective ONLY, I would be very concerned if I had a new relatively large lesion (plasmacytoma) on my skull, and not be inclined to ignore it just because my M-spike was normal. When I was diagnosed, I had multiple lesions (on my skull, and all over my body actually), and absolutely no M-spike. I believe that I have read that myeloma can change, especially after a transplant. (Hopefully someone a lot smarter than me can give you more info.)
My opinion only: It's better to be safe and treat it, than sorry, and let it get out of control. Most importantly, try not to worry about it until after your son's wedding.
Wishing you all the very best, and hope that you can truly enjoy the wedding.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Indolent vs aggressive relapse: what's the difference?
In your case, the physical evidence – new lesions and plasmacytoma – are key. If these had not appeared, then your blood tests would act as confirmation. However, in your case the blood tests are not showing what you clearly are experiencing. So in your case I would tend to agree with the first doctor. If this were breast cancer, you would not ignore a growth just because the blood test said it should not be there.
Good luck and keep us posted. Hopefully they can get this to where the blood tests and the physical evidence are in sync.
Good luck and keep us posted. Hopefully they can get this to where the blood tests and the physical evidence are in sync.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Indolent vs aggressive relapse: what's the difference?
Hi Dianaiad,
I too would be concerned about the new plasmacytomas. I have had full skeletal x-rays every year since diagnosis, and really fortunately, they have not shown new lesions or evidence of new fractures. However, the original findings are still there. One of the most unnerving items to me was a circular lesion on my skull, which has probably filled in now with cartilaginous material, but is still visible. That is the sort of finding that motivates one to take treatments, even if they are difficult to contend with sometimes.
Good luck with the wedding! Hope your singing goes well! When my daughter was getting married in 2014, I deliberately postponed a doctor's appointment until after that. I knew I was relapsing, and so did the doctor, but I wanted to enjoy that wedding. I went back onto Revlimid plus dex right after that event!
I too would be concerned about the new plasmacytomas. I have had full skeletal x-rays every year since diagnosis, and really fortunately, they have not shown new lesions or evidence of new fractures. However, the original findings are still there. One of the most unnerving items to me was a circular lesion on my skull, which has probably filled in now with cartilaginous material, but is still visible. That is the sort of finding that motivates one to take treatments, even if they are difficult to contend with sometimes.
Good luck with the wedding! Hope your singing goes well! When my daughter was getting married in 2014, I deliberately postponed a doctor's appointment until after that. I knew I was relapsing, and so did the doctor, but I wanted to enjoy that wedding. I went back onto Revlimid plus dex right after that event!
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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: Indolent vs aggressive relapse: what's the difference?
Thanks, everybody, and I agree. I'm not going to ignore a big hole in my head because my blood work is saying something else. I mean, that hole is THERE. I can feel it, and it hurts.
....and that's weird too. I mean, it hurt there before I knew it was a plasmacytoma, but I thought it was just muscle tiredness because of having to sew a lot. Now that I know it's something else, it hurts more. Thus, I KNOW that a lot of the "pain" (and it's not bad enough to need more than a Tylenol yet) is psychological, but that doesn't make it hurt less. What's up with that?
So I'm going with the chemo. I mean, there's a real chance now that I could be a grandmother within the next few months and years, and I'm going to stick around for that. It's taken my kids long enough to get married, for heaven's sake; my son is 38 and only NOW getting married?
I'm NOT missing that one.
So whatever I need to do, I'm doing. Chemo, another transplant, whatever, bring it on.
Just...when they want a bone marrow biopsy, I'd better be unconscious for that event. Call me a wuss.
And thanks for the good wishes. I AM going to enjoy that wedding! Wish I could show you the pictures. Adam chose a real cutie, though I'm not sure she has a lot of sense. I mean, she HAS agreed to marry him, after all.
....and that's weird too. I mean, it hurt there before I knew it was a plasmacytoma, but I thought it was just muscle tiredness because of having to sew a lot. Now that I know it's something else, it hurts more. Thus, I KNOW that a lot of the "pain" (and it's not bad enough to need more than a Tylenol yet) is psychological, but that doesn't make it hurt less. What's up with that?
So I'm going with the chemo. I mean, there's a real chance now that I could be a grandmother within the next few months and years, and I'm going to stick around for that. It's taken my kids long enough to get married, for heaven's sake; my son is 38 and only NOW getting married?
I'm NOT missing that one.
So whatever I need to do, I'm doing. Chemo, another transplant, whatever, bring it on.
Just...when they want a bone marrow biopsy, I'd better be unconscious for that event. Call me a wuss.
And thanks for the good wishes. I AM going to enjoy that wedding! Wish I could show you the pictures. Adam chose a real cutie, though I'm not sure she has a lot of sense. I mean, she HAS agreed to marry him, after all.
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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: Indolent vs aggressive relapse: what's the difference?
Hi Dianaiad,
I hope you have a wonderful time at the wedding. It's unnerving how unpredictable this disease is. We all think that as long as our bloods remain stable we are doing ok, but alas this is not always the case. It's a bloody, awful disease and so is the treatment, but we all go through it to keep on going. I wish you well. God bless.
Sue
I hope you have a wonderful time at the wedding. It's unnerving how unpredictable this disease is. We all think that as long as our bloods remain stable we are doing ok, but alas this is not always the case. It's a bloody, awful disease and so is the treatment, but we all go through it to keep on going. I wish you well. God bless.
Sue
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SusanTR1964 - Name: Susan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 8th February 2016
- Age at diagnosis: 51
39 posts
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