counts critically low after 1st round Vidaza

[knocks]

husband diagnosed w/ tx-related MDS in March. He is 70 years old. At time of dx was needing rbc transfusions every 2 weeks. Had 1st round of Vidaza 1st week of April.

Counts have dropped progressively since. Started needing rbc transfusion every third day and platelets about once per week. Had 2 units rbc on Thursday. Saturday night I took him to ER. His hemoglobin was 4.8 and platelet at 8000! Transfused 4 units rbc and 2 platelets. This morning platelets were 20,000.

Did 3 packs of platelets today and an endoscopy of upper GI tract. No evidence of ulceration and only pinprick bleeds, probably spontaneous from 8000 platelet count. Still in hospital – no evidence of bleeding, but can’t keep counts above critical levels.

Getting scared that counts will not rebound. Has anyone else here had counts this bad and come out the other side OK?

[Mary4Mike]

Are the doctors saying that this drop in counts is due to the Vidaza? This is called the nadir period. My husband had similar "nadirs" after rounds of Dacogen, however, he never dropped to 4.8. He always had to be hospitalized because of fever and low ANC. He went through this 4 times before we decided not to try the Dacogen again. It never did anything "good" for him. Personally, and this is only MY opinion, I would be afraid to try another round of Vidaza, but then again, maybe your husband will rebound quickly and have a good response. You have to be proactive which I am sure that you are.

[knocks]

Over a period of several days, they gave him 5 units of rbc and 4 packs of platelets because they wanted his counts up to do an endoscopy. Got his platelets above 97,000 and his Hb above 11. All the tests the hospital has done are negative.

The oncologist doesn’t say for sure, but says increase in transfusions is expected with Vidaza and is unlikely to be due to disease progression. Since the transfusions, platelets have dropped over 3 days to 43,000. Hb dropped to 9 and yesterday went back up to 11.

Yesterday he spiked a fever of 101. No idea where that came from. Urine and blood were negative for pathogens and temp dropped to normal with Tylenol and has been normal since.

He has also had 3 episodes of severe but diffuse pain since Monday. He is having trouble pinpointing the center of the pain – it spreads from upper abdomen to lower back. Each time it left him white faced and panting and took morphine to relieve. In between these episodes he is totally pain free. No one has any idea what that could be. Kidney function seems fine.

The oncologist recommends going ahead with next round of Vidaza in May with supportive transfusions, although he says risk is now increased. I think we have to figure out how to get through weekends, when Infusion Center is closed, without ending up in hospital.

[Mary4Mike]

My husband experienced severe pain in his back during the Dacogen treatments. His did not come in waves, but was constant and nothing touched it. Chemo can be brutal. What are your husband’s liver enzymes at? Could it be gallbladder? They could never diagnose my husband’s pain, but it left after the treatments. I have to say that if your husband’s HGB was 11 than 9 than 11 (without any TX in between), perhaps the Vidaza has spurred his bone marrow.

No one one wants to end up in the ER, but don’t fool around if he spikes another fever that you can’t get under control. We would go into the ER and I would tell them he had febrile neutropenia from chemo and they would fast track him to a room without ever sitting down in the waiting room. Mike’s fevers were always accompanied with rigors. Wow, this is really bringing it all back. I feel your pain and frustration with this. It is hard to watch your loved one suffer. I pray that you make it through the weekend incident free and that his counts continue to go up.

All the best,
Mary

[odellkewish]

I like the way you explain the things.

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