My mother is 73 yrs old and was diagnosed over 4 1/2 yrs ago with multiple myeloma. At that time she was told 3-5 yrs. I am scared she is getting close to the end but it is difficult to find information about the end stages of multiple myeloma. Her kidney function is at 15-20% but has been that way for months but now she is starting to get reoccurring UTI's. She has lesions on her skull, down her spine and in both arms and legs with multiple bone fractures including both legs, two ribs, two breaks in one arm and two compressed vertebra. Some fractures are healing but others are not. Prior to this last leg fracture she was starting to stand and to walk some with the assistance of a walker but suddenly was unable to move her legs or feet once she stood up. She moves them fine when she is sitting or laying but is not even able to pivot once she stands. She was scheduled for a lumbar puncture to see if the multiple myeloma had spread to her spinal fluid but her platelets were too for the procedure.
Her multiple myeloma has stopped responding to all the chemo treatments she has tried and she is now taking the last targeted oral chemo. This week she has had to have two transfusions. Each day her hemoglobin has dropped by at least 1.3. and her WBC is VERY low and so is her BP. On Friday she was transported to the hospital and diagnosed with pneumonia. The week prior she ran a fever off and on and was on antibiotics but only got worse. My family and I are very concerned. It just seems to be one hurdle after another and has been this way for months. She has basically been bedridden for weeks and can only get out of bed with a lift. Her quality of life is decreasing but she does not make it easy to help her because she does not want us to worry so by the time she complains the symptom is severe. She has little appetite, seems very restless but her mind is sharp. I know that infections in her conditions are serious but I just do not know what to expect.
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Re: What's next?
I can't offer medical advice, but 70 people have read your post and I think it is just hard to know what to say to you.
I would like to offer empathy and hugs to you. My husband has survived this disease for six years. His multiple myeloma has been aggressive and resistant to treatment. We just don't know what to expect when it comes to the continual roadblocks that are thrown at him. I can just say you have to try to find the strength to continue on, be a strong and vocal advocate for your mom even if she has a good hematologist/oncologist, encourage your mom to speak up. Many times I have had to remind my husband that he cannot just "tough things out." He must be in tune with any symptom that arises and be open about it with me and his physicians. So far, even though there have been huge scares, we carry on and there have been periods when life is sweet.
Lean on your faith for comfort. Prayer works wonders for me. Don't linger in your fears. Take it as it comes. Keep yourself well rested.
This hasn't been eloquent, just off the top of my head survival strategies. Hope it helps a little.
I would like to offer empathy and hugs to you. My husband has survived this disease for six years. His multiple myeloma has been aggressive and resistant to treatment. We just don't know what to expect when it comes to the continual roadblocks that are thrown at him. I can just say you have to try to find the strength to continue on, be a strong and vocal advocate for your mom even if she has a good hematologist/oncologist, encourage your mom to speak up. Many times I have had to remind my husband that he cannot just "tough things out." He must be in tune with any symptom that arises and be open about it with me and his physicians. So far, even though there have been huge scares, we carry on and there have been periods when life is sweet.
Lean on your faith for comfort. Prayer works wonders for me. Don't linger in your fears. Take it as it comes. Keep yourself well rested.
This hasn't been eloquent, just off the top of my head survival strategies. Hope it helps a little.
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Denise H
Re: What's next?
Hello Denise,
Re "Whats next?"
In this case, I really cannot judge your mothers condition well without actually being among the physicians directly caring for her. Her hematologist/oncologist should give you answers to this question. I would ask them this question directly and they should be honest with you and your mother.
A more general answer is that as myeloma patients near the end of their journey common life threatening complications include serious infections, low blood counts, high calcium levels, serious bone fractures and kidney failure. Any or all of these may occur.
At some point working with a Palliative care team is the best plan for many patients with cancer. They can help the family to understand, accept and plan for the late stages of myeloma.
I wish your mother and your family the best in your journey with this terrible disease.
Re "Whats next?"
In this case, I really cannot judge your mothers condition well without actually being among the physicians directly caring for her. Her hematologist/oncologist should give you answers to this question. I would ask them this question directly and they should be honest with you and your mother.
A more general answer is that as myeloma patients near the end of their journey common life threatening complications include serious infections, low blood counts, high calcium levels, serious bone fractures and kidney failure. Any or all of these may occur.
At some point working with a Palliative care team is the best plan for many patients with cancer. They can help the family to understand, accept and plan for the late stages of myeloma.
I wish your mother and your family the best in your journey with this terrible disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
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