My mom is 76 and was recently diagnosed with multiple myeloma. She had a brief treatment with Revlimid (maybe a week) and was in a skilled nursing facility. They also were treating her with radiation to relieve her extreme back pain. Mom got sepsis from not having a real bowel movement for a very long time (apparently diarrhea was getting around the impacted stool). Was in ER, ICU and now the hospital.
They are not treating her multiple myeloma now but chasing her nutrition and general condition instead; plus electrolytes are off. She is totally immobile. She has diarrhea. She has now finished 10 radiation treatments but has no appreciable change in her pain.
I have many concerns. Mostly, I am worried that without treating the multiple myeloma, she will just get worse and worse in terms of the pain. The doctors are frustrated with her because she will not do physical therapy. But she is in extreme pain. She can't even use a bedpan. Her lungs are now compromised and it feels like we are chasing this down the drain.
Any suggestions, experiences?
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Re: Mom just diagnosed but immobile & seems to be fading
I am very sorry to hear about your mother. This must be a very difficult time — especially around the holidays.
Without the details it is difficult to comment with any certainty. It will be difficult to balance the treatment of her systemic multiple myeloma (other than with radiation - which is treat localized to the multiple myeloma) while she is septic and in the ICU. It is a balance of risk versus benefit. Her infectious complication must be controlled. Radiation will control the multiple myeloma in the areas at which the radiation is targeted. The pain is likely from fractures and will not be markedly affected by further systemic therapy. But it will benefit from control with narcotics once they are safe to use.
Frequently, patient with multiple myeloma can benefit from pulse-dose dexamethasone (20-40 mg daily, 4 days on, 4 days off). In cases of spinal cord compression, this may be given daily for a period of time as well in this setting. Dex is very effective, especially in drug naive / newly diagnosed patients. Depending on her status and her recovery, Velcade (bortezomib) can also be given in the hospital. Both of these agents can compromise your mother's immune system, which is why the risk/benefit ratio is so critical.
It is always very difficult, but we also must remember that recovery and good outcomes depend on a number of factors and multiple myeloma is only a part of it — other medical conditions, both acute (new: sepsis with organ failure, etc.) and chronic (diabetes, heart, lung issues) play important roles as well.
Again, we are very sorry that your mother is so ill. We wish you and your family all the best for a good recovery.
Without the details it is difficult to comment with any certainty. It will be difficult to balance the treatment of her systemic multiple myeloma (other than with radiation - which is treat localized to the multiple myeloma) while she is septic and in the ICU. It is a balance of risk versus benefit. Her infectious complication must be controlled. Radiation will control the multiple myeloma in the areas at which the radiation is targeted. The pain is likely from fractures and will not be markedly affected by further systemic therapy. But it will benefit from control with narcotics once they are safe to use.
Frequently, patient with multiple myeloma can benefit from pulse-dose dexamethasone (20-40 mg daily, 4 days on, 4 days off). In cases of spinal cord compression, this may be given daily for a period of time as well in this setting. Dex is very effective, especially in drug naive / newly diagnosed patients. Depending on her status and her recovery, Velcade (bortezomib) can also be given in the hospital. Both of these agents can compromise your mother's immune system, which is why the risk/benefit ratio is so critical.
It is always very difficult, but we also must remember that recovery and good outcomes depend on a number of factors and multiple myeloma is only a part of it — other medical conditions, both acute (new: sepsis with organ failure, etc.) and chronic (diabetes, heart, lung issues) play important roles as well.
Again, we are very sorry that your mother is so ill. We wish you and your family all the best for a good recovery.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Mom just diagnosed but immobile & seems to be fading
Sorry to hear of your mom's diagnosis and further difficulties. I know it probably seems like doing therapy at this time is a ridiculous expectation, but if you can try to find a way to convince her to try her therapy. A good therapist is not going to push her beyond her capabilities, but all movement is going to help her. It is good for the bowels, and the respiratory system. And believe it or not, it's good for the mental health.
No one really wants to be confined to bed, unable to perform their own basic needs, but it can be hard to work past that when you are uncomfortable. It is often helpful to have someone there during therapy to help encourage and support a family member through the session. And a huge incentive is that it is required in the skilled care setting. Medicare simply won't pay for skilled care without the patient participating in their therapy. But the therapists should be starting slowly, and setting reasonable goals for her as she is first starting.
Best of luck to you and your mom.
No one really wants to be confined to bed, unable to perform their own basic needs, but it can be hard to work past that when you are uncomfortable. It is often helpful to have someone there during therapy to help encourage and support a family member through the session. And a huge incentive is that it is required in the skilled care setting. Medicare simply won't pay for skilled care without the patient participating in their therapy. But the therapists should be starting slowly, and setting reasonable goals for her as she is first starting.
Best of luck to you and your mom.
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