Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Apr 25, 2012, 07:42 AM
knocksonce knocksonce is offline
Member
 
Join Date: Apr 2012
Location: Schenectady, NY
Posts: 6
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?
__________________
husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
Reply With Quote
  #2  
Old Wed Apr 25, 2012, 08:06 PM
slip up 2 slip up 2 is offline
Member
 
Join Date: Feb 2011
Location: ontario canada
Posts: 135
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....
Reply With Quote
  #3  
Old Wed Apr 25, 2012, 11:01 PM
knocksonce knocksonce is offline
Member
 
Join Date: Apr 2012
Location: Schenectady, NY
Posts: 6
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.
__________________
husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
Reply With Quote
  #4  
Old Thu Apr 26, 2012, 12:03 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
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
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
Reply With Quote
  #5  
Old Sat Apr 28, 2012, 07:57 AM
knocksonce knocksonce is offline
Member
 
Join Date: Apr 2012
Location: Schenectady, NY
Posts: 6
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.
__________________
husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
Reply With Quote
  #6  
Old Sat Apr 28, 2012, 12:14 PM
slip up 2 slip up 2 is offline
Member
 
Join Date: Feb 2011
Location: ontario canada
Posts: 135
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
Reply With Quote
  #7  
Old Sat Apr 28, 2012, 12:52 PM
slip up 2 slip up 2 is offline
Member
 
Join Date: Feb 2011
Location: ontario canada
Posts: 135
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.
Reply With Quote
  #8  
Old Sun Apr 29, 2012, 03:09 PM
knocksonce knocksonce is offline
Member
 
Join Date: Apr 2012
Location: Schenectady, NY
Posts: 6
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?
__________________
husband, 70, diagnosed with treatment-related MDS in March 2012; in treatment with Vidaza; previous cancer of the nasopharynx
Reply With Quote
  #9  
Old Sun Apr 29, 2012, 08:45 PM
slip up 2 slip up 2 is offline
Member
 
Join Date: Feb 2011
Location: ontario canada
Posts: 135
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
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Air travel with low counts, any helpful ideas? Meri T. MDS 12 Sun Apr 16, 2017 05:29 PM
Terrible Blood Counts after Vidaza joesmith MDS 11 Tue Aug 12, 2014 03:34 PM
Low white count and starting Vidaza at age 68 Peachy Drugs and Drug Treatments 13 Sun Aug 18, 2013 10:00 PM
Can vidaza cause big drops in counts? run4peach1 Drugs and Drug Treatments 20 Wed Dec 16, 2009 07:33 AM


All times are GMT -4. The time now is 06:35 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org