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MDS Myelodysplastic syndromes

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  #1  
Old Wed Apr 25, 2012, 07:42 AM
knocksonce knocksonce is offline
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counts very low after 1st round Vidaza

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. Yesterday platelets were 20,000.

Did 3 packs of platelets yesterday 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?
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husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
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Old Wed Apr 25, 2012, 08:06 PM
slip up 2 slip up 2 is offline
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Knock...our experience with Vidaza and I "must" say every response is different...counts went into the ditch and after between 7 & 9 days started to come up again....
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Old Wed Apr 25, 2012, 11:01 PM
knocksonce knocksonce is offline
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Transfusion frequency increased within a week post-treatment and has gotten steadily worse. I'm finding lots of post with low counts, but I'm not finding posts about needing transfusions every 2-3 days.

His platelets were 8000 Saturday and he got a pack of platelets Saturday night and another on Sunday. Monday he was at 40,000 and Tuesday he was back down to 20,000. They gave 3 packs on Tuesday afternoon because they needed him above 50,000 to do an endoscopy and he reached 97,000. He was still at 92,000 this morning.

After 4 units of blood Saturday and Sunday, his hemoglobin had dropped to 7.3 yesterday.

There is blood in his stool and they can't find the source.

I don't know if we should be really scared or if this is within "normal" range for MDS.
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husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
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Old Thu Apr 26, 2012, 12:03 AM
Chirley Chirley is offline
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Hi knocksonce,

I needed transfusions on 4 (2 units each time) out of the first 5 days of the very first cycle then another transfusion each week until the next cycle then on 3 out of the 5 days of the first week of the second cycle etc. Neuts dropped to 0.0

I was having transfusions (3 units) every two weeks before I started Vidaza.

The transfusion requirement very slowly improved but I only had 5 cycles due to other health issues, so I don't know if the numbers would have improved more or not.

All the best.

Regards
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Old Sat Apr 28, 2012, 07:57 AM
knocksonce knocksonce is offline
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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. Since they packed him so full in the last few days, I've lost the feel for how frequent his transfusions would have been outpatient.
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husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
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Old Sat Apr 28, 2012, 12:14 PM
slip up 2 slip up 2 is offline
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Knock....I feel your anxiety, it was the same with my husband last year, after the first round of Vidaza....4-5 units of packed red cells and 8 of plts...then the counts started to come back up.
After the 2nd set of Vidaza the counts went down again but only needed 2 units of packed cells.
Fever often happened after the 2nd trans of the packed cells. One tylenol and the fever came down.
After 9 sets of Vidaza and being trans. free for almost 6 months it did stop working, he was off Vidaza for 4 months and he started it again this month, and he has had 3 units of packed cells this week and 4 plts.
He is in the exact same place with counts as he was last year, but we do not have the same fear as last year...as we say the new normal.
The Dr.'s will not let your husband go home and not be safe for the week-end.
I totally understand how frightened you are, as has everyone on this forum has been in the same place at one time or another.
I would love to tell you everthing is going to be fine, Vidaza is a drug and acts very differently on each person. This is only our experience with the drug.
I wish you the best
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Old Sat Apr 28, 2012, 12:52 PM
slip up 2 slip up 2 is offline
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Knocks....have been making ensure drinks as well, I mix one can of high protien and one can of higher fat with a few ice cubes and 3 scoops of ice cream in a blender, we use vanilla or strawberry it has been a hit....
We also use candied ginger seems to calm the stomach, and we use Primrose oil capsules after every injection break the capsules and rub gently on injection sites...about 3 times a day.
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  #8  
Old Sun Apr 29, 2012, 03:09 PM
knocksonce knocksonce is offline
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Thanks, slip up. I thought we were in better shape now. I think his Hb has stabilized. It seems to be bouncing around between 9 and 11, which is quite good for my husband.

We thought platelets had stabilized as they stayed in the 40s for 2 days, but today they dropped from 40,000 to 16,000. The hospital physician said normally they wouldn't transfuse til 10,000, but given the other issues that have just developed, they decided to be safe and do one unit of platelets.

Yesterday evening, his temperature spiked to 102. It has only come down to 100.9 with Tylenol and has remained there for almost 24 hours. His WBC is 1.9 and his neutrophils are 30. They are moving him into isolation and I'm now wearing a mask. He is on an antibiotic drip every 12 hours and Neupogen once a day.

Although his WBC has been marginally low since his cancer tx 5 years ago, he has never been neutropenic before. Tomorrow will be 4 weeks since the first day of the first round of Vidaza and 9 days in the hospital. Don't know why these numbers suddenly tanked. He seems to be charting his own course without reference to any of the oncologists predictions.

I wish you were around when he had cancer 5 years ago. He became anorexic then and wouldn't use a feeding tube. The oncologist told him he was going to die if he didn't take in more calories. I finally invented a shake with ice cream, Ensure, Instant Breakfast Powder, and banana and he lived on that for 6 months.

What does the Primrose oil do?
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husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
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  #9  
Old Sun Apr 29, 2012, 08:45 PM
slip up 2 slip up 2 is offline
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Knocks...hopefully the counts will come back up this week HB is a good sign...Vidaza is not nice in the first treatments...and this drug does not work on any 2 people the same, just like our DNA.
My husband will need more PLT's and PRBC this week. His Neuts went from 4.0 down to .5
We use the Primrose Oil after the Vidaza shots to keep the injection sites from turning red and peeling.

The Best
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