Fevers/Pain in AML

[Iwonka]

My dad has been diagnosed with MDS transforming to AML beginning of January 2012… The biopsy cytogenetic report stated it’s MDS/ AML with poor prognosis due to multiple chromosomal abnormalities. He went through a first cycle of VIDAZA. Every two weeks he receives blood transfusions and his platelets have been low also. When he was diagnosed over a month ago his fevers were 100 to 101. Now they are 102.4 at night and sometimes day. He did a CT scan of chest a week ago which showed resolving pneumonia. Before the CT scan was done doctor gave him an antibiotic Levoquin which seemed to work because for a couple of days fevers went down and probably started to heal infection but unfortunately my father also developed a terrible rash from the antibiotic and had severe ankle, knee, hip, and tendon pain. At one point he could not walk. He stopped taking the antibiotic and was given Augmentin. But his fevers are back up and do not want to go down. At night the sweating is terrible. The doc prescribed in addition to Augmentin Ciprofloxacin which is in the same family as the Levoquin. Unfortunately he’s not tolerating that one because he threw up after taking the first pill. He also is very depressed especially when the fevers kick in to the point that he feels he doesn’t want to fight anymore. He has terrible pain in the hip area also. He takes pain meds for that.
So my question is the doctor is not admitting him to the hospital yet because he doesn’t fit the criteria from looking at his counts. Wednesday and today he received an antibiotic through IV. Shouldn’t he be admitted? Could the fevers only be pneumonia related? What other infections could be happening? Or is the AML causing such high fevers? Will vidaza regulate the fevers? What about the pain in the hips? Did anyone experience any pains due to disease? I should mention he’s always had lower back pains due to AVM (arteriovenular malformation) in spinal cord that occurred in 2003 which led to his paralysis from below waist down. Thanks to physical therapy he was able to walk with a cane. Now he’s weak and uses wheelchair. His back/hip pains are even more unbearable.
Thank you in advance for any feedback.

[Neil Cuadra]

Iwonka,

I'm sorry that your Dad is having such a hard time getting past the fevers and pain.

I'm a caregiver, not a doctor, but in my opinion your Dad could benefit from hospitalization, round-the-clock attention, and access to specialists, given that the right combination of treatments for his multiple problems doesn't seem to have been found and that he has had trouble with side effects. So medically I think he needs the extra attention and resources he could get in a hospital, not based on his blood counts but on his overall condition, and because so many factors are involved: MDS/AML, transfusions, pneumonia, fevers, Vidaza, reactions to antibiotics, etc.

I think that the primary downsides are the chance that he'll be exposed to other sources of infection (something his doctor is no doubt well aware of) and the discomforts of being away from home and his own bed while being prodded and poked by strangers (something doctors typically don't consider). Those discomforts will be amplified for somebody who is already feeling depressed and discouraged. There's also the expense of a hospital -- does his insurance cover it?

Will you or other family members be able to stay with him most of the time if he's hospitalized, so that you could keep him company, take notes, talk to the doctors in person, and advocate for him when he needs pain medication or anything else? In my experience that makes a huge difference and might be the deciding factor if you get to vote on whether or not he's to be hospitalized.

[Iwonka]

Thank You for the reply and you made some good points there. We decided to keep a close eye on him this weekend. His fevers as of now are still high and Tylenol brings them down. He received some IV antibiotics at hospital yesterday and today so maybe it will get better this weekend... That's what we are hoping for if not then next week he starts his second Vidaza cycle on Tuesday. When we see the doctor we will talk about being admitted.

Thank you again.

[Iwonka]

We ended up going to ER with my dad two days after my initial post. His fever went up to 104 for first time. He was admitted and is still in hospital treated for a possible pneumonia. They found an enlarged lymph node in my dad's chest. It's pushing on the bronchioles causing his symptoms of coughing, wheezing. They think the lymph nodes are due to his disease of leukemia and so the pneumonia may not even be the case here. Also, I found out today that his blood tested positive for TB. They are further testing if it is a latent TB or active by collecting sputum and if negative then they'll do a biopsy of the lymph node. My dad grew up in Poland and says he was vaccinated for TB when he was young (at the time TB was common there, not anymore...) and that may cause his blood to test positive for TB. He's isolated now and we are to wear masks around him. I'm so HOPING it's not TB! I'm so disappointed at this news today even though it's not yet a 100% but still not what we need to hear on top of everything else...
He's receiving antibiotics for his maybe pneumonia, and doctor decided to continue the second round of Vidaza in hopes that it will decrease the enlarged lymph nodes. We will know more next week but in the meantime his breathing sounded worse today, he gets blood and platelet transfusions everyday.
I was wondering why the enlarged lymph nodes? What are the chances that Vidaza will work in his situation...