My father is hospitalized with infection

[djopierce]

Hi all, my father has taken a very bad turn after his first round of Vidaza. He seemed to take the treatment without much side effects. However, last week, he got a very high fever and we took him to the e/r. I am so worried, they don't know where the infection is for sure, although he has a cough and sinus congestion, no pneumonia though. After a week on strong antibiotics, he still has a slight fever so was switched to a couple of different ones today. He has received 2 transfusions and platelets twice in a week as well. Even after a shot to help his WBC, they are still below 1. They climbed to 2.2 one day, then dropped again. His platelets were 4 before they gave him some yesterday. He is still in hospital and getting very weak, he can't eat because of nausea, even after getting meds for it. I am very scared, is this a common thing after 1st round of Vidaza? Can I still hope he will start to get better, because he has given up and I can't stand it! Doctor says he could get better or he could succumb to the infection, they just don't know right now.

[Susan]

I'm so sorry your post wasn't answered. I truly hope your dad made it through and is doing much better. Did the docs finally figure out the cause? I wonder if it is a coincience or was caused/made worse by the drug. I don't know much about this Med but wanted to send my well wishes.

Suz

[djopierce]

Thank you for your kind reply. I guess there really isn't much more we can do but wait. If the new antibiotics don't start working, the doctor mentioned that we may have to make some tough decisions. So, I guess that will be deciding to stop putting him through all this and let him go home and be in peace. I have cried so hard today that my throat hurts!

[Birgitta-A]

Dear djopierce,
Low counts after the firsts cycles of Vidaza are common and many patients get severe infections like your father. Hopefully the antibiotics will have effect - in many cases they never find the reason for the infection and try different antibiotics. Good that they give blood, platelets and Neupogen or a similar drug for low white blood cells.

Neupogen only lasts a few days - when I had neutropenic fever and my neutrophils (a kind of white blood cells) were 0.1 I received Neupogen every day until my white blood cells were OK.

Don't give up hope - your father tolerated the Vidaza injections and is probably healthy except for MDS and that is important for the prognosis.
Kind regards
Birgitta-A

[djopierce]

Thank you for the info on the neulasta. I don't know why they have only given it to him once a week. I will ask the doctor today. His count did come up to 2.2 after the last one, but fell dramatically after that. The other major problem is the platelet drop to 8 or 10 only a day or two after receiving platelets. They don't seem to last long at all. It has been two weeks since the last Vidaza injection with no improvement in platelets at all. In fact, it is worse. I know this is can happen, but the doctor seems to think he will be too weak to go through the next round even.

[Birgitta-A]

Dear djopierce,
You know Neulasta as your father has received is a longacting drug - he should only get that drug once a week. I got Neupogen a similar drug that is more easy to monitor because we can get an injection every day.

Too bad with the low platelets but he seems to manage with low platelets without bleeding so the platelets function well.

This kind of adverse effects are very common as you have understood - the doctors try to give best possible supportive treatment during these difficult weeks. Then they can wait with next cycle and give lower doses of Vidaza.

Remember that hope is important - I have been following this forum during 5 years and read about many brave patients who have overcome severe adverse reactions after chemo for example Vidaza.
Kind regards
Birgitta-A

[cheri]

I wonder if the infection was brewing before your Dad had the Vidaza.

I have learned that when your body is fighting infections, everything goes haywire. Some platelets work great, some don't take at all....

The main thing to remember is that the body can take a lot, and while he is in the hospital, he will be getting round the clock monitoring, which he wouldn't at home. As soon as he can eat, bring him his favorite foods or whatever he is craving. I am a big believer in keeping nourished, and sometimes hospital food just doesn't cut it!

MDS is a huge roller coaster of symptoms and emotions...hang in there, say a prayer, and keep us posted!

[djopierce]

No, I didn't know that neulasta was long acting, thank you! His illness is so new to us still, we have so much to learn.

I am so thankful that I found this site, you all have no idea what your kind words of encouragement and knowledge have done for me.

Daddy was moved to a bigger hospital today where he can receive better care and a blood specialist will be following him everyday now. He is going to have another bone marrow biopsy tomorrow. Praying for some improvement!

[Birgitta-A]

Dear djopierce,
Very good that a blood specialist will follow your father everyday!

Don't expect too much from the BMB after one cycle of Vidaza - it takes months for that drug to have effect. Remember that he can get a big hematom after the BMB - I always bring a small stone bowel to my BMBs, put it under the place for the BMB and lay on it during 20 minutes to prevent bleeding. My platelets are dysfunctional.

As Cheri wrote nutrition is important. Hopefully your father will be able to drink and eat something.
Kind regards
Birgitta-A