My sister was diagnosed with multiple myeloma in March of this year. It was discovered after a fall at home left her with a sore back that got worse over time. Due to severe pain, which she figured was due to the fall, she was admitted to the hospital where after a slew of tests were done. Doctors determined she had multiple myeloma.
During an X-ray of her spine, she was found to have 9 fractured vertebrae, and over the course of her hospital stay, which was 10 weeks, her tailbone collapsed. She was given rounds of chemo, radiation, and a cocktail of powerful meds. She has been home since early June and in that time she has lost 5 inches (13 cm) of height, causing her rib cage to drop to the top of her hipbone. Her mobility has improved a little, from using a walker to walking unassisted for a very short distance.
We live at opposite ends of the country but I am here with her now for an impending stem cell transplant. I will say that her doctors are confounded about her never ever having shown any symptoms prior being diagnosed. She was very healthy leading up to this. The fall was, in a sense, a good thing, in that the disease may have progressed undiagnosed to the point beyond treatment.
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Re: Sister has multiple myeloma
Hi Solitude,
If there are no elevated calcium and creatinine levels, sometimes myeloma will not rear it's ugly head on regular run-of-the mill blood tests. There are special blood and urine tests which look for the myeloma markers.
Are they considering stabilizing your sister's spine (by surgery) to prevent further collapse.
If there are no elevated calcium and creatinine levels, sometimes myeloma will not rear it's ugly head on regular run-of-the mill blood tests. There are special blood and urine tests which look for the myeloma markers.
Are they considering stabilizing your sister's spine (by surgery) to prevent further collapse.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Sister has multiple myeloma
Hi Solitude,
Your sister has really been through the ringer. I'm very sorry to hear about all that she has gone through. She is so lucky to have you to help her through the ordeal she has been experiencing.
It really is surprising to hear that she had so few symptoms of the disease before her diagnosis, given how much bone damage she suffered. Looking back, did you notice any changes in her behavior prior to her diagnosis. Did she seem more tired than usual (from possible anemia), or perhaps a bit disoriented (from high calcium levels in her blood)?
In any case, I hope your sister's health continues to improve, and that she responds well to the treatment she is receiving. There are lots of helpful people here in the forum, so don't hesitate to ask any questions that come up as your sister continues to have her myeloma monitored and treated.
Good luck!
Your sister has really been through the ringer. I'm very sorry to hear about all that she has gone through. She is so lucky to have you to help her through the ordeal she has been experiencing.
It really is surprising to hear that she had so few symptoms of the disease before her diagnosis, given how much bone damage she suffered. Looking back, did you notice any changes in her behavior prior to her diagnosis. Did she seem more tired than usual (from possible anemia), or perhaps a bit disoriented (from high calcium levels in her blood)?
In any case, I hope your sister's health continues to improve, and that she responds well to the treatment she is receiving. There are lots of helpful people here in the forum, so don't hesitate to ask any questions that come up as your sister continues to have her myeloma monitored and treated.
Good luck!
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Jonah
Re: Sister has multiple myeloma
Hi,
My experience wasn't quite as severe as your sister's. She's really had a tough time.
I had seven compression vertebrae fractures. However, the pain was still intense, especially when my back went into intractable spasms. It took a lot of painkillers and kyphoplasty surgeries to rebuild my vertebrae, but I was much, much better in a few months and now can walk for miles.
I believe it showed up so severely for me because I already had osteopenia, so the myeloma ate through what was left of my vertebrae fairly quickly. Also, it seems to have focused on my back. The biopsies varied: my hip showed 50% cancerous plasma cells, but my vertebrae showed 90%. I did not have any of the other symptoms (anemia, kidney damage, high calcium, fatigue, or frequent infections) and at the time of diagnosis, my M protein was only 4.07 g/dL (40.7 g/L), just 1 g/dL above the smoldering level, and after treatment it is now undetectable.
Best wishes to you and your sister. I hope she experiences relief soon.
My experience wasn't quite as severe as your sister's. She's really had a tough time.
I had seven compression vertebrae fractures. However, the pain was still intense, especially when my back went into intractable spasms. It took a lot of painkillers and kyphoplasty surgeries to rebuild my vertebrae, but I was much, much better in a few months and now can walk for miles.
I believe it showed up so severely for me because I already had osteopenia, so the myeloma ate through what was left of my vertebrae fairly quickly. Also, it seems to have focused on my back. The biopsies varied: my hip showed 50% cancerous plasma cells, but my vertebrae showed 90%. I did not have any of the other symptoms (anemia, kidney damage, high calcium, fatigue, or frequent infections) and at the time of diagnosis, my M protein was only 4.07 g/dL (40.7 g/L), just 1 g/dL above the smoldering level, and after treatment it is now undetectable.
Best wishes to you and your sister. I hope she experiences relief soon.
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Sister has multiple myeloma
My husband was just diagnosed on August 20. Like your sister, his only symptom was bone pain. He had bronchitis accompanied by a terrible cough. His ribs on the left side were causing him a lot of pain and the doctor thought he might have a rib fracture from all the coughing. An x-ray, followed by a CT scan showed lytic lesions on ribs and vertebrae. The bloodwork that followed confirmed a multiple myeloma diagnosis. We are thankful that the doctor ordered the x-ray and that the radiologist recommended the CT scan. Who knows how long it might have been before the underlying cause of the pain was discovered. He is being treated with Revlimid and is in a clinical trial with daratumumab, given by infusion.
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mathineer
Re: Sister has multiple myeloma
Thank you for your replies.
Yes my sister had shown signs of good health prior to her diagnosis. Her job required a regular amount of heavy lifting, stair climbing and being on her feet throughout her work day. These duties she performed without any hint of a problem with her back or feelings of ill health. She hadn't had as much as a cold in years. The fall she experienced in her home was somehow a fluke in finding she has Myeloma. She literally went from vibrant health to extreme illness in a matter of two months. She has said the only change she could think of in her health a few years before was that her skin seemed to be aging and her hair was brittle.
She has been on two rounds of Revlimid which she has had some reactions to: loss of taste, hair loss, very dry skin and swelling in her extremities. Last week she underwent a bone and bone marrow biopsies which were performed pain free amazingly. The doctor was a gem! She is, at the moment quite anemic and will have a blood transfusion this week. As for her spine, there are no plans at the moment for reconstruction. We are gearing up for a stem cell transplant providing tests show she is able.
Yes my sister had shown signs of good health prior to her diagnosis. Her job required a regular amount of heavy lifting, stair climbing and being on her feet throughout her work day. These duties she performed without any hint of a problem with her back or feelings of ill health. She hadn't had as much as a cold in years. The fall she experienced in her home was somehow a fluke in finding she has Myeloma. She literally went from vibrant health to extreme illness in a matter of two months. She has said the only change she could think of in her health a few years before was that her skin seemed to be aging and her hair was brittle.
She has been on two rounds of Revlimid which she has had some reactions to: loss of taste, hair loss, very dry skin and swelling in her extremities. Last week she underwent a bone and bone marrow biopsies which were performed pain free amazingly. The doctor was a gem! She is, at the moment quite anemic and will have a blood transfusion this week. As for her spine, there are no plans at the moment for reconstruction. We are gearing up for a stem cell transplant providing tests show she is able.
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