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MDS Myelodysplastic syndromes

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  #1  
Old Mon Jun 16, 2014, 04:42 PM
julielucas julielucas is offline
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Question Start Vidaza tomorrow. Any advice?

My husband, Jeff begins tx with Vidaza at 8 am. I don't know the dosage, method of administration or any other meds he'll be given. He has ondansetron 8mg bid for nausea. He wants to take it before they begin chemo but shouldn't he wait until after his blood is drawn? I know each person has their own reactions to this treatment and we'll just have to see how he does BUT any advice, wisdom or jokes y'all want to share will be appreciated.
Thanks! Julie
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  #2  
Old Mon Jun 16, 2014, 05:53 PM
bailie bailie is offline
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How will he be receiving the Vidaza? I get it with subQ shots in my stomach. There is very little pain if any. If he is getting seven days of Vidaza it is somewhat important to plan the shot locations. I would get three on one side and four on the other. The shots are much faster than IV. There will be a 1" x 2" red area that feels like a sunburn. The shots are not felt during the day and never caused discomfort for sleeping. But again, everyone reacts differently. It is the Zofran that causes some discomfort and constipation. Be very careful about that and get good advice from the doctor ... it is important. I took the Zofran an hour before the shots. Never was sure that I needed it and was always tempted to not take it.

The Vidaza has me feeling absolutely normal. It is never too early to start thinking about the pros and cons of getting a stem cell transplant. The Vidaza has unpredictable lengths of time when it is effective and can drop off quite rapidly. My counts started improving after the second cycle.

I don't think my experience in Vietnam had any influence on my MDS, but that is a complete guess. There is absolutely no way to prove it one way or another. I haven't found anyone else in my unit that has MDS.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Mon Jun 16, 2014, 09:51 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by julielucas View Post
My husband, Jeff begins tx with Vidaza at 8 am. I don't know the dosage, method of administration or any other meds he'll be given. He has ondansetron 8mg bid for nausea. He wants to take it before they begin chemo but shouldn't he wait until after his blood is drawn? I know each person has their own reactions to this treatment and we'll just have to see how he does BUT any advice, wisdom or jokes y'all want to share will be appreciated.
Thanks! Julie
He should take it an hour or 2 before the chemo. I think its good for 4 hours so don't worry about getting the timing exact. Ondansetron is the generic version of Zofran. It tends to cause constipation so watch out for that.
Usually you show up at the infusion center or whomever is administrating the drug and they take your blood pressure and temperature. They usually have to prepare it right there so you may have to wait. The length of the wait depends on how busy the pharmacist is. Good idea to drink some water and have something to eat. Other than that its a tolerable drug. Most people experience some sort of drop in counts after the first cycle but your Hematologist will be checking his bloods so they'll know what to do.
All the best !!
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  #4  
Old Tue Jun 17, 2014, 12:18 AM
DanL DanL is offline
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main advice is to take the zofran or ondanestron. don't skip it. it is harder to control nausea after it starts than before it does. I usually took mine about 20 minutes prior to infusion and that worked quite well for me.

The administration as you may know may be 1-3 shots (depending on size and dose) or could be an IV that takes about 15-30 minutes.

I tolerated Vidaza pretty well and worked on all of the days that I received it, occasionally got a little tired in the afternoon, but was generally able to push through, eat normally, sleep normally, etc.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #5  
Old Tue Jun 17, 2014, 04:56 AM
Birgitta-A Birgitta-A is offline
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Primrose oil

Hi julie,
If Jeff is getting Vidaza sc he can try primrose oil to reduce skin irritation.
http://www.mdsbeacon.com/news/2009/1...njection-site/
Kind regards
Birgitta-A
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  #6  
Old Tue Jun 17, 2014, 10:39 PM
julielucas julielucas is offline
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Hi y'all. We made it through the 1st round of Vidaza, 2 shots in the belly. Jeff's hemoglobin was at 7.1 so he received 2 bags (?) of blood. He also had fever 100.4 so got an antibiotic IV and 10 days of pills. He had a Neupogen shot. Took his Zofran before we left and hasn't been bothered by nausea at all. I finally met his new doc. We both really like her and the awesome staff at the cancer center. He's in very good hands. Now to get ready for round 2 in the morning. BTW, y'all forgot to tell me the secret word that conjures up the laundry fairy. Have a great night!
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  #7  
Old Tue Jun 17, 2014, 11:58 PM
Chirley Chirley is offline
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Sorry about this but as bad as this diagnosis is,,, life goes on and no fairies come and helps with day to day life. In fact in time, you'll come to appreciate the the day to day normality that keeps everyone grounded. Also, tomorrow is day two of round one...not round two...and...most people call them units of blood (I used to call them bags as well). It's a good idea to check the bags and see exactly what volume is in each bag and what the expiry dates are, it's best to keep a written record of dates, units, volumes and expiry dates of transfusions if you can. You can keep these in a journal alongside the blood test results.
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  #8  
Old Wed Jun 18, 2014, 10:23 AM
sbk007 sbk007 is offline
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Julie - 2 bags of blood is considered 2 units. Depending on age and judgment most doctors consider 7-8 (for Men) the trigger for a blood transfusion. The Neupogen is used to increase the White blood cells. It can cause some pain in some patients because it uses the bone to create the WBC's. I guess he's going for Vidaza treatments 7 days every 28 day cycle(1 week on, 3 weeks off). In between those cycles he might need more transfusions if his HGB drops before the Vidaza kicks in. It all depends on how well he holds his charge after the blood transfusion and how fast he responds to the Vidaza. I hope all goes well with no complications.
Also, the Zofran shouldn't have to be taken more than once. I don't know his Doc wrote B.I.D.(Twice a day) - its usually take the odansetron/Zofran before the chemo then take another pill only if necessary.
All the best - Steve
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  #9  
Old Wed Jun 18, 2014, 12:07 PM
julielucas julielucas is offline
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Thanks for the info y'all. His hemoglobin and WBCs were up today. He's got fever 100.7 so he got another IV of rocephin and a chest xray. Fortunately the fever did not prevent him from getting Vidaza. He's doing 5 days on, 3 weeks off. He's in better physical and emotional shape today. Hope everyone has a good day!
Julie
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