New Here...Dacogen may have given Dad heart attack

[sandem01]

Hello everyone, I just found this forum and have found a lot of helpful information. I just wanted to share my situation with my dad and see if anyone can offer any insight. My dad is 73 (will be 74 on 8/11/2010) and was dx in March 2010 with MDS Intermediate 2. I am unable to give much details right now or "numbers" (my mother has all the papers), I just know that I am very scared. He is in ICU right now after getting his first treatment of Dacogen almost 3 weeks ago. The week he got the treatment he was doing great and we thought this would be the answer, but then he got really sick a week later and just kept getting worse. He was having chest pains, feeling nauseous, and lost his appetite. He wound up with a fever of 101-102 so my mom took him to the er where he has been since Thursday night (7/1/2010). He started breathing very heavy and his bp dropped so they put him in icu, where they are giving him antibiotics, more blood transfusions and keeping him sedated. They told us he had actually had a small heart attack and had a slight case of pneumonia. Well, my sister just went to visit him tonight and said all of his vital signs have improved and the nurse told us that he may get moved back to a normal room by tomorrow or Tuesday. His breathing is much better also. I feel that the chemo - Dacogen - made his rbc and wbc drop so low that it caused this! I can't imagine them wanting to give him another round of Dacogen. I wonder what they will try next. What do you think?
Jill

[Birgitta-A]

Hi Jill,
Too bad that your father got so low counts after his first cycle with Dacogen!

You know most patients get decreased red blood cells, white blood cells and platelets when they start treatment with Dacogen or Vidaza (that is supposed to be a little better for many patients than Dacogen).

It is very important to control the white blood cells and look at a kind of white blood cells called neutrophils at least once a week when we start treatment with Dacogen or Vidaza because when the white blood cells are low we easily get infections like pneumonia. When we fight the infections we can get other complications like a heart attack. If the white blood cells get too low we should get Neupogen that increases the white blood cells.

It is not possible to know anything about futher treatment now because your father has to be in better condition before his doctor will suggest anything.

Look at advices for neutropenic (too low neutrophils) patients so you know how to avoid infections. You could ask for the HGB, white blood cell count, neutrophil count and platelet count - these numbers are the most important for us. Make a report for yourself and follow his counts.

Hope your father will improve soon!
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 2 injections/week for white blood cells since neutopenic fever Sept 2007

[Al's Wife]

Hi Jill,

Sorry about your Dad's experience. Just getting the diagnosis is enough to knock one off their feet without these other complications. My husband was diagnosed on May 24, 2010, and I'm still researching as much as I can. He will begin his second round of Vidaza tomorrow. So far his white blood cell count has been fine. It's his red cells and platelets that are affected. But they told us in the beginning if his white blood cell count gets low, then he needs to REALLY do everything possible to keep from getting an infection. For example, staying away from sick grandchildren or children (or, I guess, anyone that is sick or has been sick, for that matter), NO eating at buffets, hand washing or sanitizing constantly, and the list goes on and on. They even said not to eat lettuce because you can't wash off the pesticides, I guess, good enough and to only eat fruit that can be peeled.
Probably someone who has low WBC's would be a better person than me to discuss this with you but just thought I'd share what I've learned so far.
Also, as was stated by the above post, maybe you could discuss with his doctor trying Vidaza instead of Dacogen. My husband has had two stents put in his heart as well as other heart-related issues and, so far/so good, the Vidaza has not caused any additional problems.
God bless you and your family as you fight this disease along with the rest of us.
Linda

[sandem01]

Thank you for your advice and suggestions, Linda and Birgitta-A. I just got back from the hospital a while ago and he has been moved to a regular room in the heart center (I guess because of the heart attack and they have him on a heart monitor). He is awake and talking, acting somewhat normal but more quiet than I am used to. The doctor told my mom today that everything is looking much better than before but his rbc was still low (and probably the wbc). His platelets have never been too low or too high, just the rbc and the wbc. His hemotologist is supposed to come by tomorrow, so I guess he will discuss what happened and whether he should stay with the dacogen or not. I can't wait to hear what he has to say! I brought my dad a big chocolate milk shake with whip cream today and he loved it. He seems to have an appetite but it is small and he hates the hospital food! My mom is 71 and I know this is taking its toll on her and I am worried about her too, even though she seems to be in good spirits. It's a comfort to read all of your stories. It took me forever to find this forum! Thanks again for your help
Jill