New Member dad with severe MDS

[npmadsen]

I am thankful that I found your site. I wish it had been sooner.

Dad is 94 years old, he is very stubborn, and had not gone to the doctor in years. 4 years ago he had 2 skin cancers and he was found to be pancytopenic hgb9.5, plts 100, wbc about 3.5, he had a high MMA and it was felt that he was b12 deficent so was started on b12 injections but he refused to let me have his blood retested.

Then 11/07 became extremely SOB, and swelling of his ankles, and pallor, I had to break down crying for him to let me call the ambulance. When he got to the er his wbc 800, hgb 3.4 and plts 35

He was transfused and then had a neutropenic fever but rallied and went home. We finally got him to agree to a Bone Marrow. He has MDS
since has been on aranasep and neulasta which I have been giving once a week, he is transfusion dependant. His wbc had been steady around 3.5 to 4 and plts 35 to 60.

However he fell on Wed and fractured his pelvis, he had some bleeding and was transfused and hgb 9.9, however he developed a cellulitis in his hand, and now his plts are dropping and his wbc dropped to 1.4 today , it was 3.8 2 days ago, he had his neulasta on tuesday.

I am somewhat upset with the md (the Hospitalist) caring for him, she has him only on oral ab's I think he needs IV antibiotics. They are trying to transfer him to rehab so I do not think they want to put him on the iv antibiotics as it will delay the discharge
I do not think she realizes these patients can become septic without a fever, she does not even have a differential count.
I am hoping to get her to call his hematologist or infectious disease.

My other question without doing another bone marrow , is there a way to tell if they are converting to leukemia

Thanks for your time
Eileen

[Birgitta-A]

Hi Eileen,
If they continue with Neulasta and manage to treat the infection in his hand your dad will hopefully recover. Local infections could be treated with oral antibiotics. The neutrophils are 50-60 % of the WBC:s so they don´t always have to have a differential count.

They should test the so called B-cells in the blood. If the blast cell count is more than 5 % there is a risk for leucemic transformation.

You seem to know a lot about hematological diseases and I am sure that you notice if there are any signs of that the infection doesn't decrease and your dad needs an iv antibioticum.

Hope your dad, who seems to be a tough guy, continues to fight the disease!
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen 2 injections/week for low WBC:s, asymptomatic

[npmadsen]

Thanks for your reply
When I went back yesterday, it had spread his whole hand was 3x the size of his other hand, they had called ID and stopped the oral and started him on iv abs,
He seems better today got out of bed and the pt walked him a few steps although he is in incredible pain
The hand looked better this am, but this afternoon I am not sure.
His hematologist was there today and will pump him with neupogen to hopefully get the count up.
With my direction they are getting the urologist in to see if he can help with the urinary retention, since with his state if they keep straight cathertizing him he will get a uti in addition.
The hematologist really feels he needs rehab , and since no subacute rehab will accept him on the meds(due to the cost), even though I have the meds here as his secondary insurance covers them, and I could administer them, he will get his counts up prior to dc and we will coast till he is functionally better. May mean a visit or two to the ER for an injection.
I am an NP and for 7 years worked in thrombosis my attending md was a hematologist, she was caring for him till oct 08, as I had left the job and her hours were not conducive to his care, at my new hospital the blood is drawn, he sees the doctor and if he needs a transfusion it is all done in the same area.

[Birgitta-A]

Hi Eileen,
Now I understand that your dad will get the best care since he has a daughter who looks after all the doctors. When I had neutropenic fever Sept 2007 I got Neupogen every day so my neutrophils increased from 0.1 to 14.5. Hope they will manage the infection and urinary retention!
Kind regards
Birgitta-A

[jnwink]

I am very happy that I found this site. It seems that I have been searching for people who are in the same boat that I am in. I was dx in 2006 with mds. My counts have been going down very slowly. I had my 2nd bone marrow over the summer and the results where the same. I guess I was hoping that they made a mistake the first time. I had my blood checked in October and my white count was up from the summer. I decided to take the fall off and forget about mds. I have an apt. on Presidents day so back to reality. I have been reading reports on prognosis rates and I am confused. For the low level they are stating 3 years prognosis. Is that right? Do people live longer? I read some stories on line about people having it for 10-15 years. My Dr. said that everyone is different and with the new drugs things are changing. I would love more info.
jnwink