Hi I hope you don't mind me posting, I know most people on here have actually been diagnosed with multiple myeloma or similar so I feel a bit cheeky asking for advice when I may not have it.
I suffer with anxiety and get worked up before appointments so thought that if I had an idea as to what to expect I, will be more prepared for it.. I know it sounds silly.
During routine tests for possible rheumatoid arthritis the doctor reported back to my GP that there had been an abnormal Bence Jones band found in urine and antibodies in blood (this is how it was described to me) I have had an ongoing unexplained high CRP (21-25) reading for last 3 years, so my GP repeated the tests which came back the same so said although she doubts it will turn out to be multiple myeloma as I am only 26 I better get referred anyway.
My appointment is this coming Thursday so I would welcome an idea as to what would be done at this appointment? I imagine blood and urine tests. I have heard about bone marrow biopsy, would this be at this early stage?
Many thanks
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Re: What to expect at first hematologist appointment?
Luckyweezy,
Your hematologist will likely go over with you what data he does have so far. If he thinks there's a possibility of some sort of monoclonal gammopathy, he will likely order several different blood and urine tests, including a serum protein electrophoresis (SPEP), serum immunofixation electrophoresis, a 24-hour urine test, and perhaps a serum free light chain tst. Depending on his office setup, they should be able to take the samples right there on the spot.
Once he gets those new test results back in a few days (provided he orders them), he will sit down with you again and figure out the next steps (if any). If there is still evidence for a monoclonal gammopathy, he would then likely also order up additional tests like imaging and a bone marrow biopsy outlined in the above link.
Make sure you get all copies of the lab results he has and his writeup on your diagnosis after the appointment. And also get copies of all future lab results.
Make sure you also write down any questions you have beforehand.
You may also want to record the meeting on a smartphone or another recording device. The amount of information you can be told during an appointment can be overwhelming.
Your hematologist will likely go over with you what data he does have so far. If he thinks there's a possibility of some sort of monoclonal gammopathy, he will likely order several different blood and urine tests, including a serum protein electrophoresis (SPEP), serum immunofixation electrophoresis, a 24-hour urine test, and perhaps a serum free light chain tst. Depending on his office setup, they should be able to take the samples right there on the spot.
Once he gets those new test results back in a few days (provided he orders them), he will sit down with you again and figure out the next steps (if any). If there is still evidence for a monoclonal gammopathy, he would then likely also order up additional tests like imaging and a bone marrow biopsy outlined in the above link.
Make sure you get all copies of the lab results he has and his writeup on your diagnosis after the appointment. And also get copies of all future lab results.
Make sure you also write down any questions you have beforehand.
You may also want to record the meeting on a smartphone or another recording device. The amount of information you can be told during an appointment can be overwhelming.
Last edited by Multibilly on Fri Jul 18, 2014 3:48 pm, edited 2 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What to expect at first hematologist appointment?
Thank you so much for replying, very helpful answers 
Re: What to expect at first hematologist appointment?
Multibilly/Mountain Guy has a lot of great information!
Honestly, there is so much information out there that it can be quite overwhelming. I hope that you can find some peace. MG's idea about recording your appointments is a great idea. I usually forget everything that was said in an appointment!
Honestly, there is so much information out there that it can be quite overwhelming. I hope that you can find some peace. MG's idea about recording your appointments is a great idea. I usually forget everything that was said in an appointment!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
4 posts
• Page 1 of 1