We saw her oncologist today and he doesn't feel she has much of a chance. He thinks it's too aggressive My sister says she wants to fight, so he scheduled her to be admitted tomorrow and treated with the VDT PACE.
However I'm very worried. She's VERY VERY fatigued. She did spend a lot of time not eating due to pancreatitis, and she's never fully recovered. It's taking everything in her just to get up from a chair, and short walks leave her out of breath. I asked the doctor and he said it was due to the chemo.
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Re: Strange lumps/cysts on back and neck
One thing to remember is that myeloma is not the same as something like lung or breast cancer. Because it is in your bone marrow to start with, it is already systemic, so it is spread out from the very beginning (rather than becoming metastatic, or spreading, like lung or breast cancer).
Having plasmacytomas is usually an indicator of more aggressive disease, but it does not mean you have to give up hope. My husband had them at diagnosis and had them again at relapse. Velcade, Cytoxan and dex got rid of them and have been holding the myeloma in check for a year and a half since his relapse.
Every patient is different, so I can't give guarantees, but I am frustrated that the doctor (same one that told you that myeloma doesn't behave this way, when of course it can!) did not seem to give you more information or go looking for it himself.
The chemo your sister is getting is a rough one, so it may be a difficult road, but it sounds like she has a fighting spirit. Best wishes to her, and to you (from one caretaker to another!).
Having plasmacytomas is usually an indicator of more aggressive disease, but it does not mean you have to give up hope. My husband had them at diagnosis and had them again at relapse. Velcade, Cytoxan and dex got rid of them and have been holding the myeloma in check for a year and a half since his relapse.
Every patient is different, so I can't give guarantees, but I am frustrated that the doctor (same one that told you that myeloma doesn't behave this way, when of course it can!) did not seem to give you more information or go looking for it himself.
The chemo your sister is getting is a rough one, so it may be a difficult road, but it sounds like she has a fighting spirit. Best wishes to her, and to you (from one caretaker to another!).
Re: Strange lumps/cysts on back and neck
Thank you for your reply. It is very frustrating when you have to deal with doctors that like an easy road. My sister does have a fighting spirit. We're in here now and have found out that the doctor is just giving VD PACE. I'm wondering if that will be enough.
I'm glad your husband is doing better, Ladyaero. This is such a painful and ugly disease. I've never hated anything so much. Best wishes to you both as well. Being a caretaker isn't easy. They checked my blood pressure today and it was 148/96. Stress is killing me.
My only fear is that there's a mass in the pancreas. So I keep searching for glimmers of hope from survivors who have had something similar. Some miraculous comeback. Not saying we would have the same outcome, but at least I'd know there was a chance.
I'm glad your husband is doing better, Ladyaero. This is such a painful and ugly disease. I've never hated anything so much. Best wishes to you both as well. Being a caretaker isn't easy. They checked my blood pressure today and it was 148/96. Stress is killing me.
My only fear is that there's a mass in the pancreas. So I keep searching for glimmers of hope from survivors who have had something similar. Some miraculous comeback. Not saying we would have the same outcome, but at least I'd know there was a chance.
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