Hi
I was diagnosed with MGUS 3 years ago when I was having tests for the rib pain I had suffered for 6 months.After several months of tests it turns out I have multiple sclerosis, which I've had since I was in my twenties (am 47 now).
My GP told me I had this blood abnormality which could turn into myeloma, then she got ill herself and was off sick for many months, so every time I asked her replacement stand in docs about whether anything should be done about MGUS, and surely I should at least be referred to a haematologist, they didn't do anything about it.
I eventually saw a really good doc nearly a year later and was referred to haemotologist within two weeks!
I have IgA lambda with free light chains that are stable (that's all i was told) My paraprotein M-spike started at 3 g/l and is now 5 g/l although was 6 g/l a few months ago.
I had a skeletal survey and bone marrow biopsy (BMB) about 2 years ago. Survey should one lytic lesion on skull (docs don't seem concerned). BMB I wasn't told or shown results, but doc was happy with it.
I still have rib and lower back pain which could be MS or psoriatic arthritis, which is one of my other conditions along with Raynaud's pancreatitis and high platelet level (yet to be diagnosed what causes it).
I had three embolisms in my brachial artery in arm in April this year. Have since seen quite a lot of Internet info saying people with MGUS are more likely to get embolisms, but none of the haematologists I've seen have ever mentioned this.
My bother died of a pulmonary embolism also.
Am now being seen by haemotology ever 2/3 months as they are doing lots of test regarding platelet level.
Have found this group really interesting and informative.
angelina.
Forums
10 posts
• Page 1 of 1
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Hi Angelina,
Welcome to the forum. Lots of of great folks on this site can offer you guidance.
I find it a bit puzzling that your doctors didn't seem concerned about the lytic lesion on your skull. Are you saying they didn't do any further testing (i.e. biopsy the lesion, further imaging, etc) and simply said not to worry about it?
I don't know how it works over in England, but you also really should insist on getting a copy of your bone marrow biopsy reports so that you can understand what your plasma cell percentage is, and what your cytogenetics (genetic mutations) are? In fact, it's really helpful to get copies of any of your lab reports (in the USA, these are the patient's property).
You should also be on the lookout for hypercalcemia (high calcium level on your lab), anemia (low hemoglobin ), and kidney/renal issues (high creatinine level) on your lab reports to see if there are any potential "CRAB" issues (hypercalcemia, renal issues, anemia and bone involvement). This is not an exhaustive list of lab values to look at, but it it's a good starting point if you want to start to understand your own lab tests with respect to the C, R and A in the CRAB criteria.
One thing to keep in mind is that measuring the M-Spike with IgA type multiple myeloma is not that easy. The normal test that one uses to measure an M-Spike (Serum Protein Electrophoresis, aka "SPEP"), is not very accurate in the case of IgA-type multiple myeloma. Therefore, the free light chain values "may" be a more valuable marker to track in your case.
Lastly, given you have a lytic lesion on your skull, I might suggest seeking out a multiple myeloma specialist, or at least get a second opinion (if that's an option in the English health system). Since it's been two years and they found a lytic lesion and you have current bone pains, I might also suggest getting a new skeletal survey (or requesting a PET/CT, if that's an option in your health system).
Best of luck to you ... and again, welcome to the forum.
Welcome to the forum. Lots of of great folks on this site can offer you guidance.
I find it a bit puzzling that your doctors didn't seem concerned about the lytic lesion on your skull. Are you saying they didn't do any further testing (i.e. biopsy the lesion, further imaging, etc) and simply said not to worry about it?
I don't know how it works over in England, but you also really should insist on getting a copy of your bone marrow biopsy reports so that you can understand what your plasma cell percentage is, and what your cytogenetics (genetic mutations) are? In fact, it's really helpful to get copies of any of your lab reports (in the USA, these are the patient's property).
You should also be on the lookout for hypercalcemia (high calcium level on your lab), anemia (low hemoglobin ), and kidney/renal issues (high creatinine level) on your lab reports to see if there are any potential "CRAB" issues (hypercalcemia, renal issues, anemia and bone involvement). This is not an exhaustive list of lab values to look at, but it it's a good starting point if you want to start to understand your own lab tests with respect to the C, R and A in the CRAB criteria.
One thing to keep in mind is that measuring the M-Spike with IgA type multiple myeloma is not that easy. The normal test that one uses to measure an M-Spike (Serum Protein Electrophoresis, aka "SPEP"), is not very accurate in the case of IgA-type multiple myeloma. Therefore, the free light chain values "may" be a more valuable marker to track in your case.
Lastly, given you have a lytic lesion on your skull, I might suggest seeking out a multiple myeloma specialist, or at least get a second opinion (if that's an option in the English health system). Since it's been two years and they found a lytic lesion and you have current bone pains, I might also suggest getting a new skeletal survey (or requesting a PET/CT, if that's an option in your health system).
Best of luck to you ... and again, welcome to the forum.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Hi Multibilly and thanks for replying to my post so quickly ...
Yes the doctors said the lytic lesion was of uncertain significance and not to worry and didn't do any more tests.
My haematologist is a multiple myeloma specialist but I rarely get to see her. It is usually a registrar doctor (have seen different ones every time) or the other specialist who specialises in platelet disorders and myeloma. But, again, I saw him twice this year - he ordered more tests for my clotting problems. But the next appointment I saw another doctor who was just a registrar and knew nothing about my complicated medical history.
My next appointment is on September 1st and I'm going to request some of my test results especially the BMB. I always have trouble just getting my blood results from my GP, although we are also entitled to them in the UK. I'm also going to ask about when they may consider another skeletal survey and whether anyone from haematology has looked at all the MRI scans and others scans I have had done this year due to MS and embolisms.
The last appointment I had the doc gave me my blood request slip as usual but I noticed he hadn't asked for FLC so I rang the secretary and she told me to write it on the request myself! I have been mildly anaemic for a year but my calcium levels have been fine.
Will keep you posted on any developments and thanks again for the warm welcome and info.
Angelina
Yes the doctors said the lytic lesion was of uncertain significance and not to worry and didn't do any more tests.
My haematologist is a multiple myeloma specialist but I rarely get to see her. It is usually a registrar doctor (have seen different ones every time) or the other specialist who specialises in platelet disorders and myeloma. But, again, I saw him twice this year - he ordered more tests for my clotting problems. But the next appointment I saw another doctor who was just a registrar and knew nothing about my complicated medical history.
My next appointment is on September 1st and I'm going to request some of my test results especially the BMB. I always have trouble just getting my blood results from my GP, although we are also entitled to them in the UK. I'm also going to ask about when they may consider another skeletal survey and whether anyone from haematology has looked at all the MRI scans and others scans I have had done this year due to MS and embolisms.
The last appointment I had the doc gave me my blood request slip as usual but I noticed he hadn't asked for FLC so I rang the secretary and she told me to write it on the request myself! I have been mildly anaemic for a year but my calcium levels have been fine.
Will keep you posted on any developments and thanks again for the warm welcome and info.
Angelina
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Angelina,
I am by no means a doctor, so take this with a grain of salt. However, I might be a bit more assertive about following through with understanding the nature of the lytic lesion. Others on this forum that have been through this may offer a different view, but I still think that a biopsy of the lesion would be in order given your current cancer diagnosis?? I'm curious what others on the Beacon have to say regarding this.
BTW, the routine lab tests that one usually gets when monitoring multiple myeloma are listed below under "Laboratory Tests":
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
Best of luck to you and enjoy the weekend.
I am by no means a doctor, so take this with a grain of salt. However, I might be a bit more assertive about following through with understanding the nature of the lytic lesion. Others on this forum that have been through this may offer a different view, but I still think that a biopsy of the lesion would be in order given your current cancer diagnosis?? I'm curious what others on the Beacon have to say regarding this.
BTW, the routine lab tests that one usually gets when monitoring multiple myeloma are listed below under "Laboratory Tests":
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
Best of luck to you and enjoy the weekend.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Hi again,
Have just managed to get my latest blood results and wondered if anyone can shed some light on the SFLC results:
Kappa / lambda ratio 0.14
Serum free kappa 11.21
Serum free Lambda 82.62 units (normal range 5.71- 26.30 uk levels)
I have got heamatology appointment next week and want to try ask some more questions this time. My anaemia has also gotten worse.
M spike only 6 g/l [0.6 g/dL] and calcium 2.31 mmol/L (so within range 2.10-2.55).
Any ideas ?
Have just managed to get my latest blood results and wondered if anyone can shed some light on the SFLC results:
Kappa / lambda ratio 0.14
Serum free kappa 11.21
Serum free Lambda 82.62 units (normal range 5.71- 26.30 uk levels)
I have got heamatology appointment next week and want to try ask some more questions this time. My anaemia has also gotten worse.
M spike only 6 g/l [0.6 g/dL] and calcium 2.31 mmol/L (so within range 2.10-2.55).
Any ideas ?
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Angelina-
In addition to all of the things that MultiBilly has told you, I would suggest that you look for a myeloma support group in your area. By going to a support group you can ask others with myeloma how they are managing to work through the health system in the UK and get the treatment, testing, etc that they need.
Keep pushing and try to insist on seeing the specialist each time you go to the Hematologist instead of a registrar doctor. I had to do this here in the States to treat a chronic eye problem that I have post shingles in the eye. Because I go to an ophthamologist at a teaching hospital I was seeing a different resident physician each time I went for an appointment until I insisted that I be seen only by the same doctor each time. I had to travel a little further to get an appointment with the same doctor each time, but it has been worth it.
All the best to you in getting the medical care that you need for all of your health issues and what seems like possibly active myeloma.
Nancy in Phila
In addition to all of the things that MultiBilly has told you, I would suggest that you look for a myeloma support group in your area. By going to a support group you can ask others with myeloma how they are managing to work through the health system in the UK and get the treatment, testing, etc that they need.
Keep pushing and try to insist on seeing the specialist each time you go to the Hematologist instead of a registrar doctor. I had to do this here in the States to treat a chronic eye problem that I have post shingles in the eye. Because I go to an ophthamologist at a teaching hospital I was seeing a different resident physician each time I went for an appointment until I insisted that I be seen only by the same doctor each time. I had to travel a little further to get an appointment with the same doctor each time, but it has been worth it.
All the best to you in getting the medical care that you need for all of your health issues and what seems like possibly active myeloma.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Angelina,
Following up on Nancy's comment, if you do decide to contact a myeloma support group in the UK, there is one in Plymouth. It meets the last Friday of every month from 2 pm to 3 pm in the Conference Room, Derriford Leisure Centre, Derriford Hospital, PL6 8DH.
Contacts for the group include: Lindsay Stewart (07968416234), Monica Palmer (group secretary) (07519 312 876), and Myra Saxby (01503 264 128).
Following up on Nancy's comment, if you do decide to contact a myeloma support group in the UK, there is one in Plymouth. It meets the last Friday of every month from 2 pm to 3 pm in the Conference Room, Derriford Leisure Centre, Derriford Hospital, PL6 8DH.
Contacts for the group include: Lindsay Stewart (07968416234), Monica Palmer (group secretary) (07519 312 876), and Myra Saxby (01503 264 128).
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Thanks for your replies and help.
I am not classed as having active myeloma by the docs yet, although from the reading I've done and studying what I can of my results, I believe it is at least smoldering myeloma.
Thanks again for this helpful and informative group
I am not classed as having active myeloma by the docs yet, although from the reading I've done and studying what I can of my results, I believe it is at least smoldering myeloma.
Thanks again for this helpful and informative group
Re: Hi from Plymouth England - MGUS diagnosed 3 years ago
Angelina has posted an update after her most recent doctor's appointment, which took place earlier today, in a separate discussion thread, "Free light chain level - what is too high?". You can go directly to her update from today by following this link.
To avoid postings that are duplicates of one another, we would suggest that further discussion of what diagnosis is correct in Angelina's case take place in the discussion "Free light chain level" thread mentioned above. This would include updates from additional appointments in the future.
Thanks!
To avoid postings that are duplicates of one another, we would suggest that further discussion of what diagnosis is correct in Angelina's case take place in the discussion "Free light chain level" thread mentioned above. This would include updates from additional appointments in the future.
Thanks!
10 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories