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 Sun May 13, 2012, 09:28 PM
Rich D Rich D is offline
Member
 
Join Date: Apr 2012
Location: Brooksville, FL
Posts: 16
Cool Vidaza Killing Benefit of Blood Transfusion?

Trying to be succinct, I started Vidaza regimen that was going to be 5 days on, the weekend off, and 2 more days the following week. Took my first 5, went back on Mon and had a CBC, number was down from about 9.8 to 7.5. Doc ordered 2 units of blood which I received on Tuesday. Wednesday, he gave me one more shot of Vidaza. So I was short a shot in the first regimen. He ordered another CBC on Fri, number down to 7.4. So he orders 2 more units of blood which I got on Sat.

Tomorrow 5/14/12, I start round two. Probably a CBC, then the shots if the numbers are OK, or more blood if not.

Seems to me I get a round of poison, then blood to make things better, but then more poison which would seem to kill most of the benefits of a transfusion. If he continues treatment this way, I don't see how I am supposed to benefit.

Anyone have an answer? I sure would appreciate it. Thank you.
Reply With Quote
  #2  
Old Sun May 13, 2012, 10:15 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Rich, this happened to me too but I had IV Vidaza. I still had the Vidaza on the same days as the blood transfusions.

I was told to expect increased blood transfusions for at least the first 3 cycles and maybe up to the first 6 cycles. I was told it would be worth the decrease in counts initially if the Vidaza was successful because a large percentage of people then became transfusion free.

I had other problems and stopped the Vidaza at 5 cycles for other reasons and I can't tell you what the outcome may have been for me. But I think it pays to hang in there for at least 3 or 4 more cycles.

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
  #3  
Old Mon May 14, 2012, 05:45 AM
milliken2 milliken2 is offline
Member
 
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Hi Rich;
We are new to MDS - Earl is on Dacogen IV therapy. But, we were told by 4 Hema/Oncs - one at Moffitt Cancer Center in Tampa who had previously practiced at Sloan-Kettering In Rochester NY, and also Dr. Sekeres at the Cleveland Clinic that it takes between 4-6 sessions of treatment before either Vidaza or Dacogen kick in and begin to slow the transfusion level. Right now, Earl is getting transfused at least once a week, and sometimes twice - that being the week he received chemo. He has had 2 cycles - and so far the counts still drop. I am waiting and watching - and hoping things will change for him. I hope they do for you as well. Good Luck


Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
Reply With Quote
  #4  
Old Mon May 14, 2012, 06:24 AM
milliken2 milliken2 is offline
Member
 
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Are you receiving treatment at the Florida Cander Centers?"

Rich;

We have wintered over in Spring Hill for the past 6 years - this year - since Earl was already losing so much blood - we got established with Dr. Malhotra - a Hema/Onc. at the Florida Cancer Centers in Spring Hill. In fact, it was Dr. Malhotra who thought Earl had MDS way back when we first started to see him. He wanted to start Earl on Vidaza then - but since no one had ever told us he had MDS, and I was not yet familiar with Dr. Malhotra - I called our PGH Docs at West Penn Hospital, and they told me NOT to start treatment, as they felt he didn't have MDS. Oh, how I wish I had listened to Dr. Malhotra then - as we refused treatment. Had we started, Earl would have had at least 3 cycles before we came back to PA. Instead, I listened to the Docs that I have known for years, and may have caused him to get worse in the process. Don't get down - I know that's easy for me to say since I am not the one getting treatment. How is your appetite? Alot depends on how much you can tolerate, but you have to eat - especially protein - to keep your strength up. I know when Earl gets his blood drawn today that we are headed for a transfusion.
On another note, we have been looking to buy a winter home in the Spring Hill/Weeko Wachee area - lost out on 2 because we had a questionable realtor. But there are many down there - just hard to buy from PA. Take care, and if by chance you are seeing Dr. Malhotra - tell him Beth and Earl from Pennsylvania say hello. And again - good luck to you.
Beth,
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
Reply With Quote
  #5  
Old Mon May 14, 2012, 11:21 AM
Rich D Rich D is offline
Member
 
Join Date: Apr 2012
Location: Brooksville, FL
Posts: 16
Dr. Maholtra

Thanks for the info Beth. Yes, he is my doc and I discuss a lot of things with him. One of them was Vidaza sub cu, and together we picked that regimen. I wasn't aware of the need for transfusions as often as I think I might be getting them. I go to Oak Hill for that. I thought in the beginning I would have treatment on seven days, then about three weeks off. Wrong! Seems I spend about half the month at Florida Cancer or Oak Hill. I've only had one series of shots, go this afternoon for more, if my CBC results allow.

Appetite is great. Nothing makes me nauseous, so that's a blessing.

Thanks for your help. Should you need anything from the area, please contact me.

Rich
Reply With Quote
  #6  
Old Tue May 15, 2012, 04:49 AM
Rich D Rich D is offline
Member
 
Join Date: Apr 2012
Location: Brooksville, FL
Posts: 16
Dr. Maholtra

Went for the second set of Vidaza today. They did a CBC which had come up to 9.8, however I did have the 4 units over the past three weeks. I expect the numbers to come down by the end of this session, next Tuesday, then probably a transfusion. Hope I'm wrong.

The Doc knew you well and we talked a little about how he says you're a wonderful couple, and hopes you can find something down here.

If you need any recommendations on anything, like good areas, good deals on homes, or anything else, just send a private email and I'll see if I can help you in any way.

Tell Earl to hang in there. It's tough and he knows it, but I got the feeling from the Doc that he is really working on your case, and I wouldn't be surprised if he comes up with an improved regimen or things begin to improve with the treatment he has Earl on. He did agree that it would have been better if treatment had been started earlier, and didn't seem too pleased with the PA Doc.

Rich
Reply With Quote
  #7  
Old Wed May 16, 2012, 06:14 AM
milliken2 milliken2 is offline
Member
 
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Dr. Malhotra

Rich;
Hope your numbers were okay, and that you could get your treatment. Dr. V. told me that if I got my Florida nursing license that I could come to work for him if we get down next year. I have to check into it ahead of time, and maybe get some chemo training here where Earl is getting his - observe and volunteer for a while and be ready if and when we are able to come down. He did go and have a large nickel sized growth removed fro his right forearm today - it was MUCH smaller before his chemo - and they said that even though the Dr. thinks it is 99% malignant - he said the chemo wouldn't work on this type of cancer. So - he now has 14 stitches in his arm, and it's quite painful. I just wish I had gotten to know Dr. V better - instead of trusting our uninformed PGH docs. And as far as Oak Hill Hospital is concerned - that's where Earl got his transfusions too. What a pain it was to get to that infusion room with all of the construction going on. He will get one unit of platelets this afternoon. We have an infursion lab at our local hospital - and know all of the nurses - like it a whole lot better than Oak Hill. Do you actually live in Brooksville - or do you have a Brooksville address? Take Care.
Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
Reply With Quote
  #8  
Old Fri May 25, 2012, 10:51 PM
sandem01 sandem01 is offline
Member
 
Join Date: Jul 2010
Location: Spartanburg, South Carolina
Posts: 18
My dad has just started his 3rd or 4th round of Vidaza and today had to have a transfusion with the Vidaza. His red blood had gotten down to a 6.1. We just got back from seeing him, and he still seems pretty weak even after the transfusion. He was on Dacogen for a year and a half with great results, but then it stopped working. I am worried about him and very scared. I am hoping and praying that it's going to be like when he started Dacogen: he was very sick at first and got put in ICU, but then it started working after 5 months.

Jill, daughter of Joe Brown - age 76, dx March 2010
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
Father Diagnosed anslia Tell Your Story 5 Mon Sep 22, 2014 11:59 AM
Terrible Blood Counts after Vidaza joesmith MDS 11 Tue Aug 12, 2014 03:34 PM


All times are GMT -4. The time now is 07:04 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, 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 2006-2019 Marrowforums.org