Pneumonia (PCP) and MDS

[bwf]

Hi All,

My Mom was diagnosed with AA in 1995 and now, at age 70, was diagnosed with MDS - in July of this year. Appears to be Intermediate Stage 2. Not sure of the blast counts. She started Dacogen about 3 weeks ago, via IV cathaport, and it really set her back - knocked her down. At first, it was fatigue, but then hospitalization. She has been in for 12 days or so now. Her WBC count is extremely low, around 2 I think, and unfortunately, she developed a PCP based (they think) Pneumonia in both lungs. In the last 72 hours, she appears to beating it back somewhat with Vancomycin and Bactrim. Her oxygen levels are better and her breathing is better; and fevers seem to have normalized. Another major complication for her is rectal bleeding; it doesn't always happen / occur, but, when it does, it depletes any blood products she gets. Any success stories around quieting bleeding - other than surgery to remove ulcers (which she had done 6 months ago)?

Also, I was wondering if anyone has had success around other treatments other than Dacogen? Is Vidaza a stronger drug? I've read some on that. And, also, what to make of claims that Arsenic in combo with Etanercept can help??

Just trying to make sense of everything

[margieinindy]

My husband's doc seems to think that Dacogen and Vidaza are essentially equivalent. I asked him today whether Mark should try Dacogen if the Vidaza doesn't work and he said he doesn't think so. He said a recent study that showed people benefitting from Dacogen when Vidaza didn't work were people who had only been on Vidaza for a couple of months--and it takes at least three months to show a result.

I don't know about the other potential treatments. But I do think there are several clinincal trials that might be promising.

I hope your Mom continues to get stronger.

Margie

[bwf]

Thanks Margie . . .

Can you comment on the clinical trials? What particular drugs are being tested? My mother's doctor said that she wouldn't be a good candidate for a clinical trial (and I wasn't really suggesting that she take part in a trial, per se). But, more that we try different options. My mother doesn't have time on her side, so it makes it difficult.

On a good note, she is responding well to the Bactrim and appears to be fending off the Pneumonia. We'll take all the small victories we can get

Best wishes to you and Mark . . . God Bless.

[Linda]

My husband was on Vidaza for 11 months. He was doing well, then it stopped working for him.
Now after seeing a specialist at Wake Forest Baptist Hosp. He is on Dacogen, Dr. Powell says it is stronger. It put him in the hospital too. The second treatment he got pneumonia. The Doc here didn't want to put him back on again until his counts go up.

This Chemo is like vidaza in that it doesn't kick in until the 3rd or 4th cycle. Bob and the doctor decided to take the cycles on time unless he is too sick at the time to start. He re-started after being off it for almost 3 months. He got a different infection this time, in his throat. He was in for almost a week.

His WBC were at 1.0,and platelets at 11. He had 3 trx of platelets, and 2 whole blood while in the hospital. Tuesday he was up to 2.0 WBC. He is still not over the throat infection. We go for blood work tomorrow. Hopefully somemore improvement will show up.

I hope your Mom starts to see more improvement too, soon.

[bwf]

Linda - thank you.

Did Bob get the pneumonia or throat infection while in the hospital? I believe with my mother, she did. They most recently wanted to do a bronchoscopy but we elected not to have them do it (that was this past Sunday). They wanted to confrm that the pneumonia PCP, based - which is the prime suspect. It seems that whenever they do a "procedure," that the risk of infection is very high. Her overall counts are very similar to what you describe with Bob, particularly the WBC.

Obviously, medical personnel want to get "about fixing things." I think their mindset is, first and foremost, on fixing what's broken. But, caution and patience, are also sometimes the prudent path. They had even said to us that the pneumonia looked and acted like PCP in 3 different realms. The test would have been a 4th indicator, but . . .there was also the chance that the test was negative. So, they're treated as though it is PCP, and, thus far, it appears so. 3 out of 4 ain't bad, we figured. And the doctors somewhat concurred. Although the infectious specialist seemed ready to go for the bronchoscopy.

Good Luck tomorrow and thank you again!

[Linda]

He went in with pneumonia after the 2nd Dacogen cycle.

Then after 3 months got the throat infection, which put him in again. This was caused by low 0.2 neutrophils, so his natural bacteria had a hay-day!

Today his counts were about the same. WBC 2.2, but platlets are 11, so he gets a transfusion in the morning.

Hope your mom is doing better.