Feeling frustrated about the weeks of waiting to find out what the heck is going on. How did you all cope during the testing and waiting phase?
I have had an MRI which revealed lesions on the spine as well as fractures. I was then sent to the oncologist for more tests. I am slightly anemic, losing weight, severe back pain, high overall protein, but not all blood work results are back. Next step if blood comes back with high M protein, is a bone marrow biopsy. Still three weeks out til next appointment. Yikes!
I am glad you are all here.
Forums
6 posts
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Why does it takes so long for a diagnosis?
Judie,
I'm sorry for the opportunity to welcome you to this forum. There is so much I want to say, but I'll tell you what I would do. I'd gather results of all my tests and seek the advice of a myeloma specialist. Three weeks for the results of your myeloma markers (if any) is too long. I also would wait for more blood test results before agreeing to a bone marrow biopsy.
I'm sorry for the opportunity to welcome you to this forum. There is so much I want to say, but I'll tell you what I would do. I'd gather results of all my tests and seek the advice of a myeloma specialist. Three weeks for the results of your myeloma markers (if any) is too long. I also would wait for more blood test results before agreeing to a bone marrow biopsy.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Why does it takes so long for a diagnosis?
Hi Judie,
Craig provided some good advice.
I might also suggest contacting the facility where the lab draws were taken and seeing if they have an online patient portal to view your lab results ahead of time. All the major labs such as Quest and Labcorp can return a complete myeloma blood panel to a doctor in a few days, so your lab results are already likely in, provided you are in the USA. However, if the doctor's facility is actually running the tests in house, then all bets may be off with regard to my statement. Also, some facilities withhold releasing lab results until such time that you meet with the doctor to go over the results, but I find that one can get around this kind of policy if you simply have a frank chat with the doctor or one of his/her supporting nurses.
Craig provided some good advice.
I might also suggest contacting the facility where the lab draws were taken and seeing if they have an online patient portal to view your lab results ahead of time. All the major labs such as Quest and Labcorp can return a complete myeloma blood panel to a doctor in a few days, so your lab results are already likely in, provided you are in the USA. However, if the doctor's facility is actually running the tests in house, then all bets may be off with regard to my statement. Also, some facilities withhold releasing lab results until such time that you meet with the doctor to go over the results, but I find that one can get around this kind of policy if you simply have a frank chat with the doctor or one of his/her supporting nurses.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why does it takes so long for a diagnosis?
When I was waiting for important test results, I would be deliberately nice to myself. For me this meant going for long walks, visiting friends, going to concerts, watching a movie, etc. In short, I’d get my mind off any pending test results and onto more pleasant things. I found my strategy to be very effective.
Don’t stew over it. That does not help.
Joe
Don’t stew over it. That does not help.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Why does it takes so long for a diagnosis?
Hello,
I can only add that after I moved house in 2012, my new family doctor had a diagnosis within 48 hours and confirmation by bone marrow biopsy on the third day. This despite the fact that my 'new' doctor – a great guy nearing the end of his career – had rarely, if ever, encountered another myeloma patient in this small town.
The bone marrow biopsy I had was carried out at the main hospital, and they also started my Revlimid, Velcade, and dexamethasone treatment along with a range of examinations all in the same month.
Hope all goes well. Best Wishes,
Victor L
I can only add that after I moved house in 2012, my new family doctor had a diagnosis within 48 hours and confirmation by bone marrow biopsy on the third day. This despite the fact that my 'new' doctor – a great guy nearing the end of his career – had rarely, if ever, encountered another myeloma patient in this small town.
The bone marrow biopsy I had was carried out at the main hospital, and they also started my Revlimid, Velcade, and dexamethasone treatment along with a range of examinations all in the same month.
Hope all goes well. Best Wishes,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Why does it takes so long for a diagnosis?
Thanks for the replies. All good suggestions. I will try to be bit more proactive, while taking good care of myself.
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
6 posts
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