My mum, aged 73, recently had a CT and it showed multiple lytic lesions in her skull. The problem that she had the CT for was not evident, so this was a surprise.
Since Xmas, mum has had significant short term memory loss. For example, Tuesday we bought new shoes for her, which she showed hubby, Thursday she showed him again, Saturday she forgot that she had new shoes.
She has been referred to a geriatrician for what was thought to be dementia and now is being referred to a haematologist. What can I expect? Both medically and personally for mum.
I should also mention there were no lytic lesions on the chest CT on the same day.
Forums
9 posts
• Page 1 of 1
Re: Mum has lytic lesions on skull - what to expect?
Hi Wombles,
Sorry to hear about your mother's memory issues.
Given that signs of lytic lesions were found on her skull, and also given her memory issues, it's good that she's been referred to a hematologist. However, I wouldn't jump to any conclusions just yet that your mother has multiple myeloma.
One reason I say that is because it's possible the "lytic lesions" on your mother's skull were not, in fact, myeloma-related lesions. They may instead be bone formations, known as "venous lakes", that can appear as lytic lesions. Dr. Ken Shain, who posts here in the forum regularly, mentioned this in a forum posting a while ago.
It is true that multiple myeloma can cause memory problems as a results of excess protein accumulating in the blood. The high level of protein causes the blood to be thicker than it should be, and that can result in memory problems. This condition is called "hyperviscosity".
This isn't something that happens a lot, however, so I wouldn't necessarily assume it's what is causing your mother's memory issues. They could be age related, or perhaps due to stress (?).
The hematologist your mother is seeing almost certainly will order some blood tests and probably a 24-hour urine test, as well. These tests will almost certainly uncover whether the source of your mother's problems is myeloma, or something else.
The tests he probably should order include a serum protein electrophoresis (SPEP), a serum protein immunofixation (SIFE), and similar urine tests (UPEP and UIFE). These are standard, relatively inexpensive tests, so it would be good for you to make sure most, if not all, of them are carried out for your mother.
Do you know if your mother already has had some, or all, of these tests? Has she had any other blood tests done recently?
I hope this helps. Keep us updated on how things go, and let us know if you have more questions.
Sorry to hear about your mother's memory issues.
Given that signs of lytic lesions were found on her skull, and also given her memory issues, it's good that she's been referred to a hematologist. However, I wouldn't jump to any conclusions just yet that your mother has multiple myeloma.
One reason I say that is because it's possible the "lytic lesions" on your mother's skull were not, in fact, myeloma-related lesions. They may instead be bone formations, known as "venous lakes", that can appear as lytic lesions. Dr. Ken Shain, who posts here in the forum regularly, mentioned this in a forum posting a while ago.
It is true that multiple myeloma can cause memory problems as a results of excess protein accumulating in the blood. The high level of protein causes the blood to be thicker than it should be, and that can result in memory problems. This condition is called "hyperviscosity".
This isn't something that happens a lot, however, so I wouldn't necessarily assume it's what is causing your mother's memory issues. They could be age related, or perhaps due to stress (?).
The hematologist your mother is seeing almost certainly will order some blood tests and probably a 24-hour urine test, as well. These tests will almost certainly uncover whether the source of your mother's problems is myeloma, or something else.
The tests he probably should order include a serum protein electrophoresis (SPEP), a serum protein immunofixation (SIFE), and similar urine tests (UPEP and UIFE). These are standard, relatively inexpensive tests, so it would be good for you to make sure most, if not all, of them are carried out for your mother.
Do you know if your mother already has had some, or all, of these tests? Has she had any other blood tests done recently?
I hope this helps. Keep us updated on how things go, and let us know if you have more questions.
-
JimNY
Re: Mum has lytic lesions on skull - what to expect?
Mum has had no other tests yet. She is having some blood tests tomorrow and will be referred to haematologist when those results are in. The lesions did not appear on her last head CT approx 12 months ago. The memory loss has been sudden and dramatic. It's difficult to see your much loved parent decline rapidly. I am hoping for the best. Thanks for your reply.
Re: Mum has lytic lesions on skull - what to expect?
I believe that high blood calcium, which can occur with myeloma, can cause serious mental alteration. I hope you find answers and help for your mum, and she is herself again.
-
Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: Mum has lytic lesions on skull - what to expect?
My husband's had mental health issues prior to diagnosis with multiple myeloma. He was suffering from very severe delirium. Problems included hallucinations, dressing issues, eating issues, it was extreme. Several years prior to that he'd had cardiac arrest which resulted in a brain injury.
However, he had returned to a relatively normal level of functioning, but with lingering memory issues. So the problems he had prior to diagnosis were shocking. There was nothing in his tests for myeloma to point to it causing his delirium. No extreme high calcium, and no hyperviscosity. But, once he started treatment the delirium slowly retreated. So you can't rule the myeloma out for your moms memory issues.
Hope this is somewhat helpful.
However, he had returned to a relatively normal level of functioning, but with lingering memory issues. So the problems he had prior to diagnosis were shocking. There was nothing in his tests for myeloma to point to it causing his delirium. No extreme high calcium, and no hyperviscosity. But, once he started treatment the delirium slowly retreated. So you can't rule the myeloma out for your moms memory issues.
Hope this is somewhat helpful.
Re: Mum has lytic lesions on skull - what to expect?
I'm glad you commented on this thread, Cindy. I was thinking of your husband when I saw the original posting. For some reason, I thought your husband had hyperviscosity when he was originally diagnosed, but I apparently remembered wrong (ironic, eh?).
Good point, Carol, about calcium and its possible role in mental health issues related to myeloma.
This paper has been mentioned before here in the forum, but it might be worth mentioning again,
"Multiple Myeloma Presenting as Secondary Mania," Primary Psychiatry, Nov 2009 (link to full text of article)
It has this useful information:
Wombles - Glad to hear that your mother is having blood tests done. They probably include many of the tests that I mentioned. You certainly have good reasons to be concerned about the possibility of myeloma, and I completely understand how upsetting it must be to see what has been happening with your mother. I just don't want you and your family to jump to conclusions, and assume the worst, before you really know for certain what is going on.
The one thing you may want to consider doing right now is figure out who the closest myeloma specialist is to you. Although many hematology-oncology specialists know a lot about myeloma, it can be very helpful to work with a doctor who focuses on diagnosing and treating myeloma patients. It's a rare disease, so someone who does not specialize in the disease may have only a couple myeloma patients under their care at one time.
If you let us know where you and your mother are located, we can help you find a myeloma specialist who might be nearby. Generally, myeloma specialists are based in cancer centers or university research hospitals.
Good luck!
Good point, Carol, about calcium and its possible role in mental health issues related to myeloma.
This paper has been mentioned before here in the forum, but it might be worth mentioning again,
"Multiple Myeloma Presenting as Secondary Mania," Primary Psychiatry, Nov 2009 (link to full text of article)
It has this useful information:
"Causes of mental status changes in patients with multiple myeloma include hypercalcemia, renal failure, infections, hyperammonemia, and hyperviscosity syndrome."
Wombles - Glad to hear that your mother is having blood tests done. They probably include many of the tests that I mentioned. You certainly have good reasons to be concerned about the possibility of myeloma, and I completely understand how upsetting it must be to see what has been happening with your mother. I just don't want you and your family to jump to conclusions, and assume the worst, before you really know for certain what is going on.
The one thing you may want to consider doing right now is figure out who the closest myeloma specialist is to you. Although many hematology-oncology specialists know a lot about myeloma, it can be very helpful to work with a doctor who focuses on diagnosing and treating myeloma patients. It's a rare disease, so someone who does not specialize in the disease may have only a couple myeloma patients under their care at one time.
If you let us know where you and your mother are located, we can help you find a myeloma specialist who might be nearby. Generally, myeloma specialists are based in cancer centers or university research hospitals.
Good luck!
-
JimNY
Re: Mum has lytic lesions on skull - what to expect?
We live in rural New Zealand. The nearest hospital has few specialists so no doubt we will be travelling. I am more than happy to do so.
Re: Mum has lytic lesions on skull - what to expect?
Hello Wombles,
As far as we know, Dr Kenneth Romeril is the only member of the International Myeloma Working Group (IMWG) based in New Zealand. He is in Wellington. (The IMWG is a group of leading myeloma specialists from around the world. You can find a list of the members in this posting in the forum.)
If Wellington is far from you and your mother – and if it turns out that she has multiple myeloma or otherwise needs the attention of a myeloma specialist – we suspect Dr. Romeril would be happy to recommend someone you could work with who is closer.
Best of luck to you and your mother.
As far as we know, Dr Kenneth Romeril is the only member of the International Myeloma Working Group (IMWG) based in New Zealand. He is in Wellington. (The IMWG is a group of leading myeloma specialists from around the world. You can find a list of the members in this posting in the forum.)
If Wellington is far from you and your mother – and if it turns out that she has multiple myeloma or otherwise needs the attention of a myeloma specialist – we suspect Dr. Romeril would be happy to recommend someone you could work with who is closer.
Best of luck to you and your mother.
Re: Mum has lytic lesions on skull - what to expect?
Thanks for that excellent info. We definitely won't be seeing him, as he is 800 km (500 miles) away (2 plane rides). I will let you know how things go when we get the test results.
9 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories