Well I spoke to my haematology nurse today; apparently my light chain ratio is normal at 1.4, and the bone marrow biopsy showed about 5% plasma cells, which is normal.
It appears, then, that my relapse is only evident in the new bone lesions. I've googled but haven't found anything similar, so I've no idea how common this is. My haematologist made no suggestion about whether this had any significance for progression or overall survival.
All the best Folks
Taff
Forums
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Taff,
First off, I'm sorry to hear that you've relapsed. However, it appears that the relapse is not too aggressive, which is good to see.
In regard to your light chain ratio being 1.4, you should make sure that this is the result of a serum free light chain test, not a urine test. The normal ranges for light chain results are different for urine- and serum-based tests, and urine-based results usually are considered less reliable as a multiple myeloma disease marker.
I think, however, that the 1.4 in your case is from a serum test, as 1.4 would be outside the normal range for the kappa/lambda ratio from a urine test (which is 2.04 - 10.37).
You have to be careful when discussing "light chain" results because a lot of things can lead to misinterpretations. Some questions to keep in mind include:
Terry
First off, I'm sorry to hear that you've relapsed. However, it appears that the relapse is not too aggressive, which is good to see.
In regard to your light chain ratio being 1.4, you should make sure that this is the result of a serum free light chain test, not a urine test. The normal ranges for light chain results are different for urine- and serum-based tests, and urine-based results usually are considered less reliable as a multiple myeloma disease marker.
I think, however, that the 1.4 in your case is from a serum test, as 1.4 would be outside the normal range for the kappa/lambda ratio from a urine test (which is 2.04 - 10.37).
You have to be careful when discussing "light chain" results because a lot of things can lead to misinterpretations. Some questions to keep in mind include:
- Was it a serum test, or a urine test? (Just discussed this.)
- Did the test measure free light chains, or total light chains? (Total light chain testing is unusual but not unheard of.)
- What are the units of the kappa and lambda results, mg/l or mg/dL? (It drives me nuts when people say things like "My kappa level was over a 1000 at diagnosis" without including the units.)
- If the results are from a urine test, was it a spot urine test, or a 24-hour test?
Terry
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Terry,
Thanks for your concern, though a relapse was bound to happen sooner or later and I think I've done quite well (21-24 months remission without a stem cell transplant).
The 1.4 kappa-lambda ratio was from a blood test. I've never had the urine test as far as I remember.
I just asked my nurse for my light chain results and I'm assuming it's free light chains rather than total, but I can't be 100% sure.
To be honest, I'm a bit unsure of why there's nothing unusual showing on the bone marrow biopsy, I think it might be that there's only myeloma cells at the sites where there are lesions. It's the only thing I can come up with.
It probably seems unusual to most here, with most coming from the USA, that I don't keep a record of all my tests, but the thing is, I'm treated entirely at one hospital, and they hold all my records on computer. If I have the odd question I just ring up and ask my designated nurse.
All the Best,
Taff
Thanks for your concern, though a relapse was bound to happen sooner or later and I think I've done quite well (21-24 months remission without a stem cell transplant).
The 1.4 kappa-lambda ratio was from a blood test. I've never had the urine test as far as I remember.
I just asked my nurse for my light chain results and I'm assuming it's free light chains rather than total, but I can't be 100% sure.
To be honest, I'm a bit unsure of why there's nothing unusual showing on the bone marrow biopsy, I think it might be that there's only myeloma cells at the sites where there are lesions. It's the only thing I can come up with.
It probably seems unusual to most here, with most coming from the USA, that I don't keep a record of all my tests, but the thing is, I'm treated entirely at one hospital, and they hold all my records on computer. If I have the odd question I just ring up and ask my designated nurse.
All the Best,
Taff
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Taff,
I am in the UK myself, but my sister with multiple myeloma lives in Russia. When she was diagnosed three years ago, her M-spike was quite high. Now, as her myeloma is in her soft tissue and skin (plasmocytomas), she has no M-spike and no myeloma in her bone marrow. It looks like myeloma migrated out of the bone marrow into other areas of the body.
It is different from your situation, but just to confirm that it is possible to have a symptomatic relapse with no myeloma detactable in the bone marrow.
I am in the UK myself, but my sister with multiple myeloma lives in Russia. When she was diagnosed three years ago, her M-spike was quite high. Now, as her myeloma is in her soft tissue and skin (plasmocytomas), she has no M-spike and no myeloma in her bone marrow. It looks like myeloma migrated out of the bone marrow into other areas of the body.
It is different from your situation, but just to confirm that it is possible to have a symptomatic relapse with no myeloma detactable in the bone marrow.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Thanks for that info Gala, though I'm sorry to hear your sister has extramedullary disease.
I had my blood reports from last week yesterday. I'll post actual figures and references later, when I get up, but suffice to say, free light chains were normal, as was the ratio. Just into normal haemoglobin, only a slight lowering of lymphocytes being the only out-of-normal reading.
If you didn't know I had myeloma, you certainly would not be able to tell from those results.
On another tack, for some while I've had an alternate internal sound when scratching a specific part of my head and had wondered if it had to do with a reduced skull density in that spot.
When I had my pre-radiotherapy consult I mentioned it to the oncologist, who noted a spongy spot. This will be about 4 or 5 weeks ago. Since then, the area has grown into a lump, and within the last few days has become the lump, slightly reduced in the centre because of a fingeretip-sized soft spot.
Apparently, myeloma presenting with skull lumps is rather rare, with only about 30 something cases being described in the English documentation. Wa-hay I'm special.
More detail to follow..
My Best to All
I had my blood reports from last week yesterday. I'll post actual figures and references later, when I get up, but suffice to say, free light chains were normal, as was the ratio. Just into normal haemoglobin, only a slight lowering of lymphocytes being the only out-of-normal reading.
If you didn't know I had myeloma, you certainly would not be able to tell from those results.
On another tack, for some while I've had an alternate internal sound when scratching a specific part of my head and had wondered if it had to do with a reduced skull density in that spot.
When I had my pre-radiotherapy consult I mentioned it to the oncologist, who noted a spongy spot. This will be about 4 or 5 weeks ago. Since then, the area has grown into a lump, and within the last few days has become the lump, slightly reduced in the centre because of a fingeretip-sized soft spot.
Apparently, myeloma presenting with skull lumps is rather rare, with only about 30 something cases being described in the English documentation. Wa-hay I'm special.
More detail to follow..
My Best to All
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
As mentioned, some actual figures.
Free Light Chains:
Kappa: 17.4 mg/L (3.3 - 19.4 mg/L)
Lambda: 12.1 mg/L (5.7 - 26.3 mg/L)
Ratio: 1.44 (0.26 - 1.65)
Lymphocyte: 0.87 10*9/L (0.9 - 4.5 10*9/L)
Serum Paraprotein [M-spike]: 6.3 g/L (0.63 g/dL)
Ent ded. Goodly greatly.
Taff
Free Light Chains:
Kappa: 17.4 mg/L (3.3 - 19.4 mg/L)
Lambda: 12.1 mg/L (5.7 - 26.3 mg/L)
Ratio: 1.44 (0.26 - 1.65)
Lymphocyte: 0.87 10*9/L (0.9 - 4.5 10*9/L)
Serum Paraprotein [M-spike]: 6.3 g/L (0.63 g/dL)
Ent ded. Goodly greatly.
Taff
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Taff,
With a paraprotein (M-spike) of 6.3 g/l (0.63 g/dL), I don't believe your myeloma would be considered nonsecretory or even oligosecretory. Perhaps these numbers are not the same, however, as when you were first told that you might have nonsecretory or oligosecretory disease.
It is interesting to see that your serum free light chain levels and ratio are completely in range. I guess that is not entirely unusual with a paraprotein level of 6.3, but it still strikes me as at least a little noteworthy. It certainly will make tracking your response to treatment a little more challenging.
I'm surprised to hear that skull-related myeloma is considered rare. It is mentioned regularly here in the forum, although mostly in the context of skull lesions rather than skull lumps.
I am sure you and your physicians will be able to find a suitable treatment to address what has been found. Good luck!
With a paraprotein (M-spike) of 6.3 g/l (0.63 g/dL), I don't believe your myeloma would be considered nonsecretory or even oligosecretory. Perhaps these numbers are not the same, however, as when you were first told that you might have nonsecretory or oligosecretory disease.
It is interesting to see that your serum free light chain levels and ratio are completely in range. I guess that is not entirely unusual with a paraprotein level of 6.3, but it still strikes me as at least a little noteworthy. It certainly will make tracking your response to treatment a little more challenging.
I'm surprised to hear that skull-related myeloma is considered rare. It is mentioned regularly here in the forum, although mostly in the context of skull lesions rather than skull lumps.
I am sure you and your physicians will be able to find a suitable treatment to address what has been found. Good luck!
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Ian,
Until I started writing out the numbers from my last report, I didn't realise I had any sort of M-spike. While in remission I was originally told it was undetectable and later on detectable but not measurable. When I enquired about my bone marrow biopsy result, I was told that there wasn't much to see there, and it was this that led to talk of oligosecretory. Apart from monitoring things, it doesn't seem to have much significance; at least none that I'm aware of.
Regarding skull involvement, you are of course correct. The skull is a site that is often found to be involved, usually though, with mention of 'pepper-potting' as seen in xrays. It's the skull lumps that seem to be rare.
In 4 weeks mine has gone from a soft spot, less than fingertip size, to a lump, then lump with fingertip sized soft spot two days ago. Today the soft spot is 2 x fingertip size. There was no mention of the area having any sort of hot spot on the PET/CT scan that I had.
I'm having some very slight change of sensation in my left arm. Not sure if it's oncoming neuropathy or if there may be something connected to the skull lump, it being over the area of motor control on the right side. Anything that can grow outward can grow inwards just as easily, so it's something that will probably need attention.
Maybe they'll watch and wait to see how treatment affects it or decide to radiotherapy it. I'll contact them tomorrow anyway. I'll also have a more in-depth discussion about oligosecretory or not in about 10 days and will report back, in order to inform.
My Best to all
Still ent ded
Taff
Until I started writing out the numbers from my last report, I didn't realise I had any sort of M-spike. While in remission I was originally told it was undetectable and later on detectable but not measurable. When I enquired about my bone marrow biopsy result, I was told that there wasn't much to see there, and it was this that led to talk of oligosecretory. Apart from monitoring things, it doesn't seem to have much significance; at least none that I'm aware of.
Regarding skull involvement, you are of course correct. The skull is a site that is often found to be involved, usually though, with mention of 'pepper-potting' as seen in xrays. It's the skull lumps that seem to be rare.
In 4 weeks mine has gone from a soft spot, less than fingertip size, to a lump, then lump with fingertip sized soft spot two days ago. Today the soft spot is 2 x fingertip size. There was no mention of the area having any sort of hot spot on the PET/CT scan that I had.
I'm having some very slight change of sensation in my left arm. Not sure if it's oncoming neuropathy or if there may be something connected to the skull lump, it being over the area of motor control on the right side. Anything that can grow outward can grow inwards just as easily, so it's something that will probably need attention.
Maybe they'll watch and wait to see how treatment affects it or decide to radiotherapy it. I'll contact them tomorrow anyway. I'll also have a more in-depth discussion about oligosecretory or not in about 10 days and will report back, in order to inform.
My Best to all
Still ent ded
Taff
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
An addition, prompted by Ian's mention of my M-spike.
Some light googling led to a report about relapsed myeloma, unfortunately I didn't remember to copy a link.
Anyway, it says that there was awareness that relapses could manifest as oligosecretory, that it's a known thing, and that an M-spike was not uncommon in such cases and they could well be transient. This should be borne in mind in case of over-prescribing. Will know more on Monday.
Still ent ded.
Taff
Some light googling led to a report about relapsed myeloma, unfortunately I didn't remember to copy a link.
Anyway, it says that there was awareness that relapses could manifest as oligosecretory, that it's a known thing, and that an M-spike was not uncommon in such cases and they could well be transient. This should be borne in mind in case of over-prescribing. Will know more on Monday.
Still ent ded.
Taff
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi All,
First review after first treatment cycle today. Bloods are looking goodly greatly with only trace amounts of paraprotein.
Lump on head has more or less collapsed with a soft spot of about 20/25 millimeters. Apparently previous PET/CT scan showed a hole right through the skull, so it's suspected that there was a plasmacytoma that has responded to the first cycle of treatment. There'll be repeat scans done after 3 or 4 cycles, for comparison.
Didn't get much in the way of facts and figures as it was basically good news and part of the consult was me complaining about some aspects of treatment: lack of hand washing by some nursing staff and a bit of a clash with the lady who takes my blood and her general attitude.
I'll continue to update the thread in order to inform.
Ent ded yet
Taff
First review after first treatment cycle today. Bloods are looking goodly greatly with only trace amounts of paraprotein.
Lump on head has more or less collapsed with a soft spot of about 20/25 millimeters. Apparently previous PET/CT scan showed a hole right through the skull, so it's suspected that there was a plasmacytoma that has responded to the first cycle of treatment. There'll be repeat scans done after 3 or 4 cycles, for comparison.
Didn't get much in the way of facts and figures as it was basically good news and part of the consult was me complaining about some aspects of treatment: lack of hand washing by some nursing staff and a bit of a clash with the lady who takes my blood and her general attitude.
I'll continue to update the thread in order to inform.
Ent ded yet
Taff
-
Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
22 posts
• Page 2 of 3 • 1, 2, 3