My husband was diagnosed with nonsecretory myeloma in January 2014. He had six cycles of Cybord (cyclophosphamide, Velcade [bortezomib], dexamethasone) followed by an autologous stem cell transplant in September.
We have had the results of a recent bone marrow biopsy, and we have been told that there is no detectable myeloma. He also had a PET scan done, and there is also no sign of active myeloma, so all in all good results.
My question is: As his myeloma is not detectable in blood or urine, where do we go from here?
We saw his consultant, and he said that the tests will need to be repeated in three months, and if they are good, then we can look at six monthly testing.
My concern is that this seems a long time between testing when secretory patients have their bloods tested every four weeks.
I would be very grateful for any advice from anyone with the same type of myeloma.
Many thanks
Suzi
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Re: Nonsecretory multiple myeloma - frequency of testing?
Hello Suzi,
We're sure you'll get some feedback from other nonsecretory patients here in the forum in regard to your questions.
In the meantime, we just wanted to make you aware of a few resources here at The Beacon you may want to consider.
First, here is an article by myeloma specialist Dr. Bijay Nair on the subject of nonsecretory multiple myeloma.
Dr. Bijay Nair, "Nonsecretory Multiple Myeloma," The Myeloma Beacon, Oct 21, 2011.
Second, here is link to a list of previous discussions here in the forum about nonsecretory myeloma:
Nonsecretory multiple myeloma - Beacon forum discussions
Several of the discussions have responses by other myeloma specialists who help with questions in the forum, and several also specifically deal with the topic of tracking nonsecretory myeloma.
In general, you can find previous discussions here in the forum about a particular topic by going to the forum search box and typing the topic keyword into the search box, then hitting return. Be sure to try variations on the topic, such as both "Velcade" and "bortezomib", not just "Velcade".
Over time, it also will be helpful to get familiar with the forum's advanced search capabilities, which allow you to search on more than one keyword at a time, or search through posting titles and text.
One thing with the search box that won't work the way you expect it is just going to the search box and typing in a question, like "How to treat peripheral neuropathy". That causes the search to look for each word in that question in the titles of existing discussions. Very few titles, if any, will have all of those words in the title. It's better to use just a keyword, like "neuropathy", for the search.
We're sure you'll get some feedback from other nonsecretory patients here in the forum in regard to your questions.
In the meantime, we just wanted to make you aware of a few resources here at The Beacon you may want to consider.
First, here is an article by myeloma specialist Dr. Bijay Nair on the subject of nonsecretory multiple myeloma.
Dr. Bijay Nair, "Nonsecretory Multiple Myeloma," The Myeloma Beacon, Oct 21, 2011.
Second, here is link to a list of previous discussions here in the forum about nonsecretory myeloma:
Nonsecretory multiple myeloma - Beacon forum discussions
Several of the discussions have responses by other myeloma specialists who help with questions in the forum, and several also specifically deal with the topic of tracking nonsecretory myeloma.
In general, you can find previous discussions here in the forum about a particular topic by going to the forum search box and typing the topic keyword into the search box, then hitting return. Be sure to try variations on the topic, such as both "Velcade" and "bortezomib", not just "Velcade".
Over time, it also will be helpful to get familiar with the forum's advanced search capabilities, which allow you to search on more than one keyword at a time, or search through posting titles and text.
One thing with the search box that won't work the way you expect it is just going to the search box and typing in a question, like "How to treat peripheral neuropathy". That causes the search to look for each word in that question in the titles of existing discussions. Very few titles, if any, will have all of those words in the title. It's better to use just a keyword, like "neuropathy", for the search.
Re: Nonsecretory multiple myeloma - frequency of testing?
I was diagnosed with nonsecretory multiple myeloma February 2011. After 6 rounds of chemo, I had an ASCT in August, 2011, and have been in remission since then.
We do blood tests every three months. While, by definition, I never had an M-spike, when the myeloma was active I was anemic and produced no light chains. I also get a MRI yearly of the thoracic spine, the main site of the multiple myeloma. My onc feels that, if / when I relapse, he would pick it up from the above noted blood work. I should mention that a urinalysis is also done at the time of the blood tests.
The best of fortune to you.
Tom
We do blood tests every three months. While, by definition, I never had an M-spike, when the myeloma was active I was anemic and produced no light chains. I also get a MRI yearly of the thoracic spine, the main site of the multiple myeloma. My onc feels that, if / when I relapse, he would pick it up from the above noted blood work. I should mention that a urinalysis is also done at the time of the blood tests.
The best of fortune to you.
Tom
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TomG184
Re: Nonsecretory multiple myeloma - frequency of testing?
I too have nonsecretory multiple myleoma. I have a PET scan every 6 months and complete bloodwork every 12 weeks. I am currently on Revlimid, 21 days on, 7 days off (10 mg) and have monthly bloodwork tracking kidney function, anemia, etc.
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KitKat225 - Name: KitKat225
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2014
- Age at diagnosis: 62
4 posts
• Page 1 of 1