I have recently been diagnosed with MGUS. I guess my numbers were fairly low and I was told not to worry "at all." Easier said than done. I was also told that if my numbers warrant it, I will have a BMB at the end of September.
All I can think about day and night are the stories online about the terrible BMB experiences so many people have had. I finally called my new doctor and asked for conscious sedation. She felt that a local would work just fine, but said that she would agree to Versed [midazolam] plus the local.
If anyone has advice as to whether this will help me through the procedure, I would appreciate your feedback. Sounds like many get a pain killer in addition to Versed, but I'm not sure why.
And are having two strong drugs like Versed and morphine at the time time considered to be safe?
I am 65. This hematologist/oncologist feels that the local with Versed will be all that is needed.
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SusanJeanne - Name: Susan Lenihan
- Who do you know with myeloma?: I have MGUS at the present time
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Newly diagnosed and fearing my upcoming BMB
Hi SusanJeanne,
We will leave it to others here to share specific experiences they've had that might be helpful to you. However, we wanted to point you to a number of previous discussions about bone marrow biopsies that have taken place in the forum where you might find useful information.
This link will take you to a long list of discussions related (primarily) to bone marrow biopsies. Not all discussions will be directly related to your question, but many will.
Bone marrow biopsy-related discussions in the Beacon forum
We will leave it to others here to share specific experiences they've had that might be helpful to you. However, we wanted to point you to a number of previous discussions about bone marrow biopsies that have taken place in the forum where you might find useful information.
This link will take you to a long list of discussions related (primarily) to bone marrow biopsies. Not all discussions will be directly related to your question, but many will.
Bone marrow biopsy-related discussions in the Beacon forum
Re: Newly diagnosed and fearing my upcoming BMB
Hi Susan,
I am a fellow MGUSer and my experience is very similar to yours. I learned about my elevated IgG last October and I had no concept of what it meant. Then went to a local hematologist who said my numbers were low and it was nothing to worry about.
Shortly after that, I found this forum and started learning and realized I should see a specialist. So this past February I went and was reassured, but was told I really should have a bone scan and the dreaded biopsy to confirm it was indeed MGUS and not asymptomatic (smoldering) myeloma. This scared me and I must say I waited a while, spooked by the many horror stories I read on the internet. I had even scheduled an appointment and then canceled ... twice! I was so scared. My doctor wouldn't even provide Versed, just Ativan [lorazepam], despite my begging.
I knew I just had to do it. I was driving myself crazy between the fear of the pain and fear of the results. Finally, two weeks ago was the big day. Walking to the examination room I felt like it was walking to my execution based on all I had read. I literally stopped in my tracks and broke down crying. My husband even became curt with the staff because they had not even given me the Ativan. My blood pressure was way up for me, as I am normally low, and I was literally shaking.
Once in the exam room, my doctor was incredibly patient and kind, gave me 1/2 an Ativan. I was so emotionally exhausted I just wanted it to be over.
He started with the lidocaine injection. Honestly that was the only part that was uncomfortable. I barely felt the second one I can honestly say I did not feel the aspirate nor the core biopsy. All I really felt was pressure. It was sore for a full week after, but really only when I was lying in bed
I'm sorry this has become so long, but I can't imagine anyone could be more fearful than I was of the BMB, but I am so grateful that now I know where I stand. I realize it was foolish of me given the very important info I learned. It was very risky to wait.
So, since Versed has been made available to you in combination with the lidocaine, I am pretty sure you will be okay and the pain minimal, if at all. Unfortunately, it really must be done.
I know we must face these challenges individually, but I am sending you lots of cyber hugs and wishes for only the best.
Nikki
I am a fellow MGUSer and my experience is very similar to yours. I learned about my elevated IgG last October and I had no concept of what it meant. Then went to a local hematologist who said my numbers were low and it was nothing to worry about.
Shortly after that, I found this forum and started learning and realized I should see a specialist. So this past February I went and was reassured, but was told I really should have a bone scan and the dreaded biopsy to confirm it was indeed MGUS and not asymptomatic (smoldering) myeloma. This scared me and I must say I waited a while, spooked by the many horror stories I read on the internet. I had even scheduled an appointment and then canceled ... twice! I was so scared. My doctor wouldn't even provide Versed, just Ativan [lorazepam], despite my begging.
I knew I just had to do it. I was driving myself crazy between the fear of the pain and fear of the results. Finally, two weeks ago was the big day. Walking to the examination room I felt like it was walking to my execution based on all I had read. I literally stopped in my tracks and broke down crying. My husband even became curt with the staff because they had not even given me the Ativan. My blood pressure was way up for me, as I am normally low, and I was literally shaking.
Once in the exam room, my doctor was incredibly patient and kind, gave me 1/2 an Ativan. I was so emotionally exhausted I just wanted it to be over.
He started with the lidocaine injection. Honestly that was the only part that was uncomfortable. I barely felt the second one I can honestly say I did not feel the aspirate nor the core biopsy. All I really felt was pressure. It was sore for a full week after, but really only when I was lying in bed
I'm sorry this has become so long, but I can't imagine anyone could be more fearful than I was of the BMB, but I am so grateful that now I know where I stand. I realize it was foolish of me given the very important info I learned. It was very risky to wait.
So, since Versed has been made available to you in combination with the lidocaine, I am pretty sure you will be okay and the pain minimal, if at all. Unfortunately, it really must be done.
I know we must face these challenges individually, but I am sending you lots of cyber hugs and wishes for only the best.
Nikki
Re: Newly diagnosed and fearing my upcoming BMB
Nikki posted a great response and mostly I just wanted to encourage you. I was apprehensive as well, but I am seeing a myeloma specialist at a large teaching hospital with an incredible cancer program (for lots of different cancers). He did not do the BMB, but rather a specialist who literally does hundreds every year did it.
She did an excellent job. I really don't remember having a whole lot of pain with the lidocaine injections. And then I realized, "Did you guys just put the drugs in the IV?". I had conscious sedation like you will. I remember the procedure but literally, I had no pain even though I knew what was going on. I had more pain and discomfort when I had an emergency C-section with an epidural and IV anesthesia. And I was pretty drugged up for that.
So, please be assured, I do not embrace pain ... and I truly believe if you have a skilled health care provider who does BMBs regularly, you will have an easy time of it.
And the best part is finding out once and for all what your diagnosis is. I know for sure I'm MGUS so now I can relax a little bit
She did an excellent job. I really don't remember having a whole lot of pain with the lidocaine injections. And then I realized, "Did you guys just put the drugs in the IV?". I had conscious sedation like you will. I remember the procedure but literally, I had no pain even though I knew what was going on. I had more pain and discomfort when I had an emergency C-section with an epidural and IV anesthesia. And I was pretty drugged up for that.
So, please be assured, I do not embrace pain ... and I truly believe if you have a skilled health care provider who does BMBs regularly, you will have an easy time of it.
And the best part is finding out once and for all what your diagnosis is. I know for sure I'm MGUS so now I can relax a little bit
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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
Re: Newly diagnosed and fearing my upcoming BMB
I can't thank you both for your honest, informative and encouraging replies. I'm not afraid anymore. My doctor is experienced and, with the lidocaine and Versed, I should be just fine. I guess it's true about being careful about what you read on the internet. It can be a scary place.
Happy to still be in the "MGUS" category, but think I will see a specialist now, even though I'm told that this hem/onc is very experienced and has several MGUS and multiple myeloma patients. I live in the Chicago area and should be able to find a good doctor.
Again, thank you.
Happy to still be in the "MGUS" category, but think I will see a specialist now, even though I'm told that this hem/onc is very experienced and has several MGUS and multiple myeloma patients. I live in the Chicago area and should be able to find a good doctor.
Again, thank you.
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SusanJeanne - Name: Susan Lenihan
- Who do you know with myeloma?: I have MGUS at the present time
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
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