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Hi MM Caregiver-
I am sorry to read of your husband’s situation. I agree with your decision to 1) come home and 2) work with hospice. 14 years is well beyond the averages. Yes, you two have fought a long, hard fight.
“What’s next” for you and your husband will depend largely on his current situation. Meaning, much will depend on his kidney health, bone health, blood health, etc. For example, Iif your husband’s myeloma has light chains that have affected his kidney function in the past, that may continue to negatively affect him. That kind of thing.
I should also say that I don’t know what affect his plasma cell leukemia will have.
My experience and studies say that you both are managing your situation as well as you possibly can.
My husband had been diagnosed with smouldering Multiple Myeloma a little less than 2 years ago. He awoke in Oct. 2022 and threw up, had a fast heartbeat. Long story short. . . he coded in ER 3 times over a 5 hour period. He died the third time. He was treated for sepsis, kidneys were failing, his numbers were all over the place. They did not try to intubate. He could talk etc after his first code although he was having pain all over body. Hands and feet were freezing. They had no ICU room available. He was a medical malpractice attorney – the best in Eastern TN for sure so he had all sorts of testing in last 3 months due to increased fatigue but his oncologist did not think his SMM had changed to MM. He had worked hard like he always had until the day he died. They did not intubate him. He had a heart Cath a month prior and Dr. who did it said “I wish I had your heart.” So heart was good. He was in good shape and didn’t smoke or drink. I asked for autopsy and that idiot said it was heart attack.. But he would not do autopsy. I do think they should have intubated him and RN had recommended that on his first code. His oncologist said his “numbers were fine. He did not think it was MM but I think it may have been due to kidney failure sepsis etc. All the symptoms that ki!! people with MM. John did not tell me anything about his illness but he was having lots of tests. That night he said Autonomic Nervous System to me and nurse so I think he must have read about that as what may happen in final stage of MM. My last resort is to hire a specialist to review his records. I don’t know what happened that night. One of male nurses was crying and said very angrily, These People! I tried to get him to tell me what the matter was but he wouldnt. That bothers me. Any ideas anybody?Reply
I am sorry for your loss. Clearly, you are facing many challenges. Good luck,
While there is no specific answer (or I should say that the answer differs in each case), I can say that research documents increased therapies once the MM survivor becomes refractory repeatedly. In other words, MM survivors eventually reach RR status and the natural inclination is to try more therapies. This often leads to a greatly reduced quality of life.
I’m sorry I can’t offer specifics.
Hang in there,
my husband is in the final stages of MM. It progressed to secondary plasma cell leukemia. i just brought him home Friday, we are now under the care of Hospice. he has fought a VERY long and hard fight,Reply
14 years. my heart is breaking. i don’t know what to expect and i’m afraid to ask………..what’s next?