Hi,
I would like to know if anyone else has had the same experience as I have. My haematologist says I have baffled them all as my protein levels show that I have passed the MGUS stage, yet I haven't developed full blown myeloma. I'm now in no mans land but will start to have regular infusions to protect my bones and blood tests to check whether it develops into myeloma.
I have had nuclear and MRI scans and the bone marrow biopsy showed there were no cancer cells present, but there abnormalities. However, after checking the results again, they have told me there is something abnormal in my pelvic area, so now I'm to have a cat scan. All these results have been given to me in the last week.
Can anyone offer me an explanation? I'm confused and scared. I could cope with what I know, but it's hard to cope when the experts can give no answers!
I hasten to say I have an excellent GP and the whole team around me seem utterly reliable.
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Re: In no man's land between MGUS and multiple myeloma
Hi Pixie,
Welcome to the forum. I can totally understand your anxiety and we've all been there before.
Your situation as you describe it sounds a bit peculiar to me.
First, there is a clearly defined stage between MGUS and symptomatic multiple myeloma known as smoldering myeloma (which is where I am at). This should not be baffling to a hematologist that has a good understanding and experience with multiple myeloma.
Secondly, it is a bit odd that a doctor that was performing imaging tests for suspected multiple myeloma would do a nuclear bone scan. Nuclear bone scans are not good at picking up skeletal issues caused by multiple myeloma and a specialist familiar with multiple myeloma would know this. However, an MRI scan is good at detecting potential damage from multiple myeloma. Was your CT scan just a CT scan or was it a PET/CT scan? A PET/CT scan is very good at indicating whether any bone damage has been caused by a cancer such as multiple myeloma or not.
If you are scheduled to receive infusions to strengthen your bones, you are likely looking at a bisphosphonate drug such as Zometa or Aredia. These drugs are not to be taken lightly and one would usually only take them if there was a clear indication of existing bone loss or bone damage.
Lastly, I'm guessing from your spelling of haematologist that you aren't in the USA? While your doctors may seem totally reliable to you, there is no substitute for working with a hematologist/oncologists that specializes in multiple myeloma. If you let us know where you are located, folks on this forum can likely make some recommendations on where to find multiple myeloma experts in your area.
Welcome to the forum. I can totally understand your anxiety and we've all been there before.
Your situation as you describe it sounds a bit peculiar to me.
First, there is a clearly defined stage between MGUS and symptomatic multiple myeloma known as smoldering myeloma (which is where I am at). This should not be baffling to a hematologist that has a good understanding and experience with multiple myeloma.
Secondly, it is a bit odd that a doctor that was performing imaging tests for suspected multiple myeloma would do a nuclear bone scan. Nuclear bone scans are not good at picking up skeletal issues caused by multiple myeloma and a specialist familiar with multiple myeloma would know this. However, an MRI scan is good at detecting potential damage from multiple myeloma. Was your CT scan just a CT scan or was it a PET/CT scan? A PET/CT scan is very good at indicating whether any bone damage has been caused by a cancer such as multiple myeloma or not.
If you are scheduled to receive infusions to strengthen your bones, you are likely looking at a bisphosphonate drug such as Zometa or Aredia. These drugs are not to be taken lightly and one would usually only take them if there was a clear indication of existing bone loss or bone damage.
Lastly, I'm guessing from your spelling of haematologist that you aren't in the USA? While your doctors may seem totally reliable to you, there is no substitute for working with a hematologist/oncologists that specializes in multiple myeloma. If you let us know where you are located, folks on this forum can likely make some recommendations on where to find multiple myeloma experts in your area.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: In no man's land between MGUS and multiple myeloma
Hi Multibilly,
Yes, I'm in the UK. The history is that I started having back pain at the end of October, but as we were on a long holiday and travelling about, I didn't get to see my GP until early December. I had several blood and urine tests and an X-ray.
By mid December, the pain was terrible so the next stage was to have a nuclear scan, full body including soft tissue and it was performed on January 14. My GP had the results the following morning and phoned to discuss them and said she had referred me for an emergency MRI scan. By that time, I was mainly pain free as I had been prescribed MST and oramorph.
The MRI scan was performed on February 8, and I saw a haematologist on February 11. They already had the result of the MRI and said they were 99% certain I had myeloma but to be certain they took a bone marrow biopsy. They said there were major problems on T5and L11.
I returned on February 18 and was told that my results were the most obscure ones that they had ever seen. They had called in further expertise and held a case conference. They said there were bands of something or other in the bone marrow but no cancer cells. However, I had passed MGUS . I was told that my bones had suffered some damage, hence the need for infusions; the name escapes me but it begins with Z. I will also need regular blood tests.
The following day my GP telephoned to say she was unhappy with something in the MRI scan (in the pelvic area) and had sent them to an oncologist for his opinion. Later that day the haematologist phoned to say they had reviewed my results and felt there was an abnormality in the pelvic region and the radiographer had referred me for a CT scan. I hope to get a date this week.
I don't know whether I'm on my head or my heels.
Thank you for your caring response and I hope your health improves, it's a terrible place to be. I am now wondering whether I have bone cancer, it's scary!
Yes, I'm in the UK. The history is that I started having back pain at the end of October, but as we were on a long holiday and travelling about, I didn't get to see my GP until early December. I had several blood and urine tests and an X-ray.
By mid December, the pain was terrible so the next stage was to have a nuclear scan, full body including soft tissue and it was performed on January 14. My GP had the results the following morning and phoned to discuss them and said she had referred me for an emergency MRI scan. By that time, I was mainly pain free as I had been prescribed MST and oramorph.
The MRI scan was performed on February 8, and I saw a haematologist on February 11. They already had the result of the MRI and said they were 99% certain I had myeloma but to be certain they took a bone marrow biopsy. They said there were major problems on T5and L11.
I returned on February 18 and was told that my results were the most obscure ones that they had ever seen. They had called in further expertise and held a case conference. They said there were bands of something or other in the bone marrow but no cancer cells. However, I had passed MGUS . I was told that my bones had suffered some damage, hence the need for infusions; the name escapes me but it begins with Z. I will also need regular blood tests.
The following day my GP telephoned to say she was unhappy with something in the MRI scan (in the pelvic area) and had sent them to an oncologist for his opinion. Later that day the haematologist phoned to say they had reviewed my results and felt there was an abnormality in the pelvic region and the radiographer had referred me for a CT scan. I hope to get a date this week.
I don't know whether I'm on my head or my heels.
Thank you for your caring response and I hope your health improves, it's a terrible place to be. I am now wondering whether I have bone cancer, it's scary!
Re: In no man's land between MGUS and multiple myeloma
Hi Pixie,
Now that you've provided this additional information, things seem a little bit clearer.
I'm not a doc, so please confirm all this with your doc. It isn't that uncommon for a bone marrow biopsy to come up "clean" even though one may have a monoclonal gammopathy. This is known as a "dry tap". The reason that happens is that the myeloma disease is not spread evenly throughout one's bone marrow. So, there ends up being a certain amount of luck involved as to whether or not one hits a patch of disease when performing a biopsy.
I think I also may have misunderstood you when you said "nuclear scan". From the way you describe the scan, it sounds like this was a PET scan (which is a nuclear test), and not a nuclear "bone scan", since the scan was also looking at soft tissues. A PET scan would have visually indicated to the docs whether the bone damage you are experiencing was caused by cancer or not.
The following link provides a really good overview on various imaging tradeoffs with respect to myeloma:
Dr. Prashant Kapoor, "To PET or not to PET," forum posting on July 24, 2014
The "Z" drug is likely Zometa (zoledronic acid), which sounds like a good idea given your bone issues.
You might consider discussing getting another bone marrow biopsy (perhaps on the opposite hip?) to help confirm the diagnosis.
Now that you've provided this additional information, things seem a little bit clearer.
I'm not a doc, so please confirm all this with your doc. It isn't that uncommon for a bone marrow biopsy to come up "clean" even though one may have a monoclonal gammopathy. This is known as a "dry tap". The reason that happens is that the myeloma disease is not spread evenly throughout one's bone marrow. So, there ends up being a certain amount of luck involved as to whether or not one hits a patch of disease when performing a biopsy.
I think I also may have misunderstood you when you said "nuclear scan". From the way you describe the scan, it sounds like this was a PET scan (which is a nuclear test), and not a nuclear "bone scan", since the scan was also looking at soft tissues. A PET scan would have visually indicated to the docs whether the bone damage you are experiencing was caused by cancer or not.
The following link provides a really good overview on various imaging tradeoffs with respect to myeloma:
Dr. Prashant Kapoor, "To PET or not to PET," forum posting on July 24, 2014
The "Z" drug is likely Zometa (zoledronic acid), which sounds like a good idea given your bone issues.
You might consider discussing getting another bone marrow biopsy (perhaps on the opposite hip?) to help confirm the diagnosis.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: In no man's land between MGUS and multiple myeloma
Hi,
It was definitely not a PET scan, it was a gamma camera scan. I think the PET scans are usually looking for secondaries.
You're right with the name of the drug, I will get the first infusion tomorrow.
Thanks for your advice and help.
It was definitely not a PET scan, it was a gamma camera scan. I think the PET scans are usually looking for secondaries.
You're right with the name of the drug, I will get the first infusion tomorrow.
Thanks for your advice and help.
5 posts
• Page 1 of 1