Hello Everyone,
Unfortunately, I am new here and I'm an info freak. My family isn't as obsessed as I am.
My sister (40 years old) was taken to the ER and admitted 8 days ago. As of yesterday hem/onc doctor believes that she has multiple myeloma. She presented with anemia, very bad hypercalcemia, joint pain, and a huge fluid cyst on her kidney.
After a million tests, they have drained the kidney cyst, put in a PIC line with antibiotic every 8 hrs, multiple transfusions, but have got her stabilized to not need other IVs or oxygen any longer. Still have catheter and kidney drain in place after 6 days.
Today we find out there's cysts all over her internally, separate of all the bone lesions. But the doctors say they can't find source of infection and that she cannot start treatment until she infection free. Another week of hospital they say. They are doing another bone biopsy Monday morning. Am I crazy here or is this because of the cancer?
I'm afraid she is near end stage already. Nobody seems to know anything, or my mom and my brother in law are too afraid to ask the important stuff. I found a great doctor at UF that specializes in multiple myeloma and am hopeful we can get her in there to see him.
I know this is a lot to throw at you all, but I'm mainly wondering about the cysts. Is this from the multiple myeloma or is this a separate infection that they haven't been able to diagnose? I can't really find much on that if its related or not.
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8 posts
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Re: Sister may have myeloma - can cysts cause infection?
I'm very sorry to hear about your sister's situation, Kelly. It's good, though, that she is in a hospital and getting lots of medical attention. It's also great that you're thinking about arranging for her to be seen by a myeloma specialist. The general hemoncs who are seeing her now probably have a lot of useful knowledge, but it will be very helpful, given her current status, if she could be seen by a myeloma specialist.
Given all the symptoms that your sister had when she went into the hospital, it unfortunately would not be surprising if the diagnosis of myeloma is correct. Symptoms such as bone lesions, anemia, and elevated blood calcium levels are classic symptoms of multiple myeloma.
That being said, just because your sister may have myeloma doesn't mean her myeloma can't be treated. More likely than not, her doctors will be able to stabilize her situation, at which point she will be able to begin treatment for her myeloma (if that's what she has). And there are a lot of treatment options that will allow your sister to be with you and your family for many years to come.
You mentioned that your sister seems to have "cysts" throughout her body, and that they drained a cyst that was on her kidney. Is it possible that you are using the word cyst to describe what the doctors may have called "plasmacytomas"?
Typically, someone with multiple myeloma will develop collections of cancerous plasma cells within their bones. Those plasma cell tumors are known as plasmacytomas.
Sometimes, these plasma cell tumors can develop outside the bone, where they are known as "extramedullary plasmacytomas" (or "outside of the bone plasma cell tumors").
This may be what your sister has, and what has been described to you as "cysts".
If, however, the "cysts" are not plasma cell tumors, then I don't think they would be myeloma-related.
Whether or not the cysts are plasmacytomas or something else, I don't think they could be the direct source of the infection.
However, multiple myeloma itself can make someone more susceptible to infections. The spread of the cancerous plasma cells in the myeloma patient's bone marrow reduces the body's ability to generate white blood cells that are used to fight off infection, making infection more likely.
I hope this helps. Please let us know more about what you find out about your sister's situation, even if you do not have any additional questions. You may find that posting the information is helpful, and it could lead to additional feedback that's helpful to you and your family.
Good luck!
Given all the symptoms that your sister had when she went into the hospital, it unfortunately would not be surprising if the diagnosis of myeloma is correct. Symptoms such as bone lesions, anemia, and elevated blood calcium levels are classic symptoms of multiple myeloma.
That being said, just because your sister may have myeloma doesn't mean her myeloma can't be treated. More likely than not, her doctors will be able to stabilize her situation, at which point she will be able to begin treatment for her myeloma (if that's what she has). And there are a lot of treatment options that will allow your sister to be with you and your family for many years to come.
You mentioned that your sister seems to have "cysts" throughout her body, and that they drained a cyst that was on her kidney. Is it possible that you are using the word cyst to describe what the doctors may have called "plasmacytomas"?
Typically, someone with multiple myeloma will develop collections of cancerous plasma cells within their bones. Those plasma cell tumors are known as plasmacytomas.
Sometimes, these plasma cell tumors can develop outside the bone, where they are known as "extramedullary plasmacytomas" (or "outside of the bone plasma cell tumors").
This may be what your sister has, and what has been described to you as "cysts".
If, however, the "cysts" are not plasma cell tumors, then I don't think they would be myeloma-related.
Whether or not the cysts are plasmacytomas or something else, I don't think they could be the direct source of the infection.
However, multiple myeloma itself can make someone more susceptible to infections. The spread of the cancerous plasma cells in the myeloma patient's bone marrow reduces the body's ability to generate white blood cells that are used to fight off infection, making infection more likely.
I hope this helps. Please let us know more about what you find out about your sister's situation, even if you do not have any additional questions. You may find that posting the information is helpful, and it could lead to additional feedback that's helpful to you and your family.
Good luck!
Re: Sister may have myeloma - can cysts cause infection?
My uneducated guess would be that her multiple myeloma, assuming she has it, has lowered her immunity making it harder to fight an infection the doctors believe is the source of the cyst.
multiple myeloma treatments aren't given in cases of low immunity as far as I know. I had to have a blood test to check my immunity before every treatment.
A slight delay in treatment to get her infection free isn't necessarily going to have a large impact on the outcome. Many start treatment with multiple myeloma well along, I did 5 years ago, and responded well to it.
multiple myeloma treatments aren't given in cases of low immunity as far as I know. I had to have a blood test to check my immunity before every treatment.
A slight delay in treatment to get her infection free isn't necessarily going to have a large impact on the outcome. Many start treatment with multiple myeloma well along, I did 5 years ago, and responded well to it.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Sister may have myeloma - can cysts cause infection?
An infection is the usual cause of a "Cyst". A Cyst is often presented as a fluid filled sac containing many things, including pathogens, and many differentiated cells. (ie. WBC,RBC's, Histones,Myeloblasts, neutrophils, etc) From a Culture & Sensitivity study--often specific details are obtained, such as specific bug involved (Bacteria) and it's likely etiology, (ie where from ?) and what specific drugs work best. An Abcess is similar in structure as a Cyst.
A Plasmacytoma ( EMP or otherwise) is a SOLID MASS, made up of cells,(mostly redundant WBC's) epithelial tissues, membranes, etc. It shows up on x-ray/MRI/CT scan...readily. No contrast material is usually required to "enhance" the basic view of a plasmacytoma.
Cysts can be drained....and go away quickly.
An Abcess can also be drained...and goes away fairly quickly with the correct medications ( often antibiotics) on Board.
A Plasmacytoma does not go away and can't usually be "Drained". Surgery, Radiation, and Steroids are used to reduce or eliminate Plasmacytomas. Plasmacytoma are often associated with Multiple myeloma.
I suspect her immune system is being overwhelmed by the Infection(s) present. multiple myeloma often causes the immune system to be weakened, along with "CRAB" type responses.
Hence, I would hope that the infection is treated first, as it is apparently systemic. ( Septic Infection ?) That can be immediately life threatening. The Infection is the Priority.
Once she is hemodynamically stabilized--she can then be further worked up / treated for multiple myeloma or other possible disease processes.
Good luck.
A Plasmacytoma ( EMP or otherwise) is a SOLID MASS, made up of cells,(mostly redundant WBC's) epithelial tissues, membranes, etc. It shows up on x-ray/MRI/CT scan...readily. No contrast material is usually required to "enhance" the basic view of a plasmacytoma.
Cysts can be drained....and go away quickly.
An Abcess can also be drained...and goes away fairly quickly with the correct medications ( often antibiotics) on Board.
A Plasmacytoma does not go away and can't usually be "Drained". Surgery, Radiation, and Steroids are used to reduce or eliminate Plasmacytomas. Plasmacytoma are often associated with Multiple myeloma.
I suspect her immune system is being overwhelmed by the Infection(s) present. multiple myeloma often causes the immune system to be weakened, along with "CRAB" type responses.
Hence, I would hope that the infection is treated first, as it is apparently systemic. ( Septic Infection ?) That can be immediately life threatening. The Infection is the Priority.
Once she is hemodynamically stabilized--she can then be further worked up / treated for multiple myeloma or other possible disease processes.
Good luck.
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Rneb
Re: Sister may have myeloma - can cysts cause infection?
Wondering if you have any updates for us, kelly38, about your sister's situation. I hope she's doing a lot better.
Re: Sister may have myeloma - can cysts cause infection?
Sounds like your sister may have polycystic kidney disease in addition to the myeloma. I'm familar with both diseases.
I wish her well
I wish her well
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DougC
Re: Sister may have myeloma - can cysts cause infection?
Hello everyone,
Sorry I have not been back to say thank you for your posts. Thru all this I guess I was holding out hope that her official diagnosis would not keep me here. Unfortunately it is myeloma.
The cysts were from an infection and that seems to be doing ok with IV daily. Today she had another appointment with doctor and they gave her the diagnosis and they also told her she is the youngest patient they have ever heard of.
I don't have much details, as she didn't ask questions (due to her fear I think). All I got was 4 weeks of some treatment 2 times a week. Then stem cell draw. Then chemo. No staging # .
She said they told her it's over 80 percent of her body. Doesn't make sense the way she explained. Also something about her proteins rising.
I hope to get more over the next few days. She isn't wanting to talk about anything right now. My poor mom is a basket case since my sister is shutting everyone out except her husband.
Thank you all
I will be here more often now. You all are the best.
Sorry I have not been back to say thank you for your posts. Thru all this I guess I was holding out hope that her official diagnosis would not keep me here. Unfortunately it is myeloma.
The cysts were from an infection and that seems to be doing ok with IV daily. Today she had another appointment with doctor and they gave her the diagnosis and they also told her she is the youngest patient they have ever heard of.
I don't have much details, as she didn't ask questions (due to her fear I think). All I got was 4 weeks of some treatment 2 times a week. Then stem cell draw. Then chemo. No staging # .
She said they told her it's over 80 percent of her body. Doesn't make sense the way she explained. Also something about her proteins rising.
I hope to get more over the next few days. She isn't wanting to talk about anything right now. My poor mom is a basket case since my sister is shutting everyone out except her husband.
Thank you all
I will be here more often now. You all are the best.
Re: Sister may have myeloma - can cysts cause infection?
We're very sorry to hear about your sister's diagnosis, Kelly. Unfortunately, myeloma seems to be becoming more and more common among younger people.
The important thing your sister should know is that treatments for the disease are improving continuously, and the prognosis for a myeloma patient today is incredibly better than it was just 5 or 10 years ago.
If you have any further questions about your sister's situation, please feel free to post them here, or as new questions elsewhere here in the forum. You also will be able to find a lot of information just by searching the forum from the forum search box and from the search box for the articles on the site (that search box is in the upper right of the top menu bar).
(Note: For both types of searches, you'll get the best result by searching on keywords such as a drug's name, or a side effect such as "neuropathy", or "transplant". There's also a list of "topic" pages that might be helpful to you and your sister at the top of the Beacon's News page.)
Finally, if your sister hasn't done so already -- and regardless of the fact that she'll be starting treatment soon -- she should arrange to be seen by a myeloma specialist. Most of the best specialists are at treatment centers such as those listed in the Beacon's list of multiple myeloma treatment centers.
Your sister is also welcome to ask questions herself here in the forum. We'll all try to do the best we can to be supportive and helpful.
All the best to you, your sister, and your family.
The important thing your sister should know is that treatments for the disease are improving continuously, and the prognosis for a myeloma patient today is incredibly better than it was just 5 or 10 years ago.
If you have any further questions about your sister's situation, please feel free to post them here, or as new questions elsewhere here in the forum. You also will be able to find a lot of information just by searching the forum from the forum search box and from the search box for the articles on the site (that search box is in the upper right of the top menu bar).
(Note: For both types of searches, you'll get the best result by searching on keywords such as a drug's name, or a side effect such as "neuropathy", or "transplant". There's also a list of "topic" pages that might be helpful to you and your sister at the top of the Beacon's News page.)
Finally, if your sister hasn't done so already -- and regardless of the fact that she'll be starting treatment soon -- she should arrange to be seen by a myeloma specialist. Most of the best specialists are at treatment centers such as those listed in the Beacon's list of multiple myeloma treatment centers.
Your sister is also welcome to ask questions herself here in the forum. We'll all try to do the best we can to be supportive and helpful.
All the best to you, your sister, and your family.
8 posts
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