Hi,
I'm new to the forum but have been reading many posts and the excellent articles available on this site. My mother has just been diagnosed with what appears to be smoldering myeloma. At least that's what we hope it is. The only test result she has so far is the original blood test, which identified the kappa protein. We thought it meant MGUS, but when we saw the haematologist, he explained that the protein reading of 18 was in the smoldering myeloma range (under 10 would be MGUS).
She's now had a bone marrow biopsy, 24-hour urine test, full body xray, and more blood tests. We are due to get the results next week.
We are very worried and we want to ensure we get the best advice and information we can. I'm hoping someone here may be able to give us some advice and recommendations as to multiple myeloma specialists in Sydney. I would be so grateful for your help.
Thank you.
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Re: Multiple myeloma specialists - Sydney, Australia
Hello GMM,
We're sorry to hear about the situation with your mother, but it looks like her doctors are running the right sort of initial tests.
When looking for myeloma specialists just about anyplace in the world, a good starting point is this list of the members of the International Myeloma Working Group. Based on the names listed there and other Australian myeloma specialists we're aware of, here is an initial list of Sydney-area myeloma specialists that should give you a good starting point:
Ross Brown - Royal Prince Alfred
John Gibson - Royal Prince Alfred
Joy Ho - Royal Prince Alfred
Douglas Joshua - Royal Prince Alfred
Chris Ward - Royal North Shore Hospital
Some of the Australian members of the forum may be able to provide additional names for you to consider.
We're sorry to hear about the situation with your mother, but it looks like her doctors are running the right sort of initial tests.
When looking for myeloma specialists just about anyplace in the world, a good starting point is this list of the members of the International Myeloma Working Group. Based on the names listed there and other Australian myeloma specialists we're aware of, here is an initial list of Sydney-area myeloma specialists that should give you a good starting point:
Ross Brown - Royal Prince Alfred
John Gibson - Royal Prince Alfred
Joy Ho - Royal Prince Alfred
Douglas Joshua - Royal Prince Alfred
Chris Ward - Royal North Shore Hospital
Some of the Australian members of the forum may be able to provide additional names for you to consider.
Re: Multiple myeloma specialists - Sydney, Australia
Dear GMM,
I have been on this merry go round since May last year.
We live in the Southern Highlands and have been travelling to the SAN. We are happy with the doctor for the most part, but wanted an opinion from a myeloma specialist so went through the IMWG list for specialists in Sydney.
To update you. I was told Prof Joshua was retired from practice and just doing research. Prof Gibson still doing some, but little, clinical, as he is heavily into research. I couldn't get in to Prof Joy Ho who is still there and the message passed back to me was "we are all myeloma specialists here and confer with each other".
I took an appointment with Dr Christian Bryant who has just finished his PhD and told me he is specialising in myeloma. He is very approachable and normal. Here's a list of his myeloma-related publications on Pubmed.
Does your mum have a high plasma cell percentage, as under 30 g/l is MGUS if the plasma cell percentage is less than 10%.
Good luck
I have been on this merry go round since May last year.
We live in the Southern Highlands and have been travelling to the SAN. We are happy with the doctor for the most part, but wanted an opinion from a myeloma specialist so went through the IMWG list for specialists in Sydney.
To update you. I was told Prof Joshua was retired from practice and just doing research. Prof Gibson still doing some, but little, clinical, as he is heavily into research. I couldn't get in to Prof Joy Ho who is still there and the message passed back to me was "we are all myeloma specialists here and confer with each other".
I took an appointment with Dr Christian Bryant who has just finished his PhD and told me he is specialising in myeloma. He is very approachable and normal. Here's a list of his myeloma-related publications on Pubmed.
Does your mum have a high plasma cell percentage, as under 30 g/l is MGUS if the plasma cell percentage is less than 10%.
Good luck
Re: Multiple myeloma specialists - Sydney, Australia
Thank you Aussie Annie and Beacon Staff.
The doctor we have seen so far is Assoc Prof Raj Ramakrishna in Kogarah, but he doesn't seem to be on that list. He also doesn't seem to be part of a larger unit like the doctors you mention at Royal Prince Albert.
We need to get the results of tests he has ordered first and see what it all means and what the advice is, but we actually have a referral for Prof Gibson too for another opinion. Problem is he is away overseas until August. We can see Dr. Bryant before then, so it's great to see some positive feedback for him and that he is heavily involved in research into multiple myeloma. I just don't know how urgently we should be seeing a specialist and whether to wait for Prof Gibson. There has already been a delay due to the availability of the first doctor.
We will find out next week about the percentage of plasma cells in the bone marrow. I read the xray report today and am concerned as there were indications of multiple myeloma in the arms and skull. No indication in the spine or legs. Is this enough to mean the disease is active?
My mum is struggling to understand this all and I am so worried about how she is going to cope if she needs treatment. She's terrified of the prospect of chemo.
The doctor we have seen so far is Assoc Prof Raj Ramakrishna in Kogarah, but he doesn't seem to be on that list. He also doesn't seem to be part of a larger unit like the doctors you mention at Royal Prince Albert.
We need to get the results of tests he has ordered first and see what it all means and what the advice is, but we actually have a referral for Prof Gibson too for another opinion. Problem is he is away overseas until August. We can see Dr. Bryant before then, so it's great to see some positive feedback for him and that he is heavily involved in research into multiple myeloma. I just don't know how urgently we should be seeing a specialist and whether to wait for Prof Gibson. There has already been a delay due to the availability of the first doctor.
We will find out next week about the percentage of plasma cells in the bone marrow. I read the xray report today and am concerned as there were indications of multiple myeloma in the arms and skull. No indication in the spine or legs. Is this enough to mean the disease is active?
My mum is struggling to understand this all and I am so worried about how she is going to cope if she needs treatment. She's terrified of the prospect of chemo.
Re: Multiple myeloma specialists - Sydney, Australia
Dear GMM,
I can relate to how frightening this process is. It is truly terrifying waiting for all the tests to be done and evaluated.
I had several areas of concern on x-ray which were later cleared on MRI and in fact I am soon to have my 12-month follow up to make sure that there have been no changes. I hope your mum has the same outcome.
I had to make the same decision regarding Prof Gibson a couple of months ago and did not want to wait for 5 months and elected to see Dr. Bryant knowing they would confer. It's hard to know what to do in these situations and I sympathise.
I am surprised that the doctor would say it is smoldering without all the results in and to be honest I would head straight to a myeloma specialist and potentially save yourselves some confusion and unnecessary stress. Further, a myeloma specialist may have access to a clinical trial with one of the newer drugs if it ever comes to that and I truly hope it won't.
Can I ask how old your mum is and her general state of health?
I wish you all the best. Please let us know how you get on and what you decide.
There is some really great help and information available on the Beacon.
I can relate to how frightening this process is. It is truly terrifying waiting for all the tests to be done and evaluated.
I had several areas of concern on x-ray which were later cleared on MRI and in fact I am soon to have my 12-month follow up to make sure that there have been no changes. I hope your mum has the same outcome.
I had to make the same decision regarding Prof Gibson a couple of months ago and did not want to wait for 5 months and elected to see Dr. Bryant knowing they would confer. It's hard to know what to do in these situations and I sympathise.
I am surprised that the doctor would say it is smoldering without all the results in and to be honest I would head straight to a myeloma specialist and potentially save yourselves some confusion and unnecessary stress. Further, a myeloma specialist may have access to a clinical trial with one of the newer drugs if it ever comes to that and I truly hope it won't.
Can I ask how old your mum is and her general state of health?
I wish you all the best. Please let us know how you get on and what you decide.
There is some really great help and information available on the Beacon.
Re: Multiple myeloma specialists - Sydney, Australia
Thanks Aussie Annie.
I called the haematology department at Royal Prince Albert and am waiting to see who can see us first. It will probably be Christian Bryant. I'll let you know how we go.
Its great to hear the MRI cleared up concerns on the x-ray for you. I hope all goes well with your follow up.
My mum is 69 and relatively well. She's had osteoporosis for many years, high blood pressure, and cholesterol all managed with medication. She does complain of back pain and fatigue sometimes, but nothing has ever sparked a concern.
I will definitely stay in touch on this forum. It's a great resource. I feel so much more informed and now know what questions to ask the doctors on mum's behalf.
I called the haematology department at Royal Prince Albert and am waiting to see who can see us first. It will probably be Christian Bryant. I'll let you know how we go.
Its great to hear the MRI cleared up concerns on the x-ray for you. I hope all goes well with your follow up.
My mum is 69 and relatively well. She's had osteoporosis for many years, high blood pressure, and cholesterol all managed with medication. She does complain of back pain and fatigue sometimes, but nothing has ever sparked a concern.
I will definitely stay in touch on this forum. It's a great resource. I feel so much more informed and now know what questions to ask the doctors on mum's behalf.
6 posts
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