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  #1  
Old Sat Aug 16, 2014, 10:31 AM
Wife Mary Wife Mary is offline
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Vidaza injection site reactions

Besides Tylenol for the pain, does anyone have other comfort measures they've found helpful? Ice? He's miserable. Hasn't had this reaction for a long time and I've no recollection on what to do. Hate it when he suffers.
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  #2  
Old Sun Aug 17, 2014, 04:16 AM
Birgitta-A Birgitta-A is offline
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Primrose oil

Hi Mary,
Primrose oil is supposed to decrease skin reactions after Vidaza injections.
http://www.mdsbeacon.com/news/2009/1...njection-site/
Kind regards
Birgitta-A
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  #3  
Old Sun Aug 17, 2014, 06:28 AM
SLB SLB is offline
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When I was having vidaza injections I always rubbed primrose oil on the site but often wondered if it helped at all. Nothing I found was very helpful. I remember some weeks I couldn't wear some jeans because of the discomfort! However I have heard of some people that get their vidaza as an IV? Is this an option, if the sites are really painful? Sorry, I can't be more helpful!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #4  
Old Sun Aug 17, 2014, 12:00 PM
Whizbang Whizbang is offline
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As SLB points out you can have Vidaza administered as an infusion over one to two hours... For the sake of expediency, they administer it as a shot, and many tolerate it well...

When I had Dacogen (similar to Vidaza) last year, I would go at lunch time, and get it as an infusion, and never had a reaction...

It really is a time saving as well as cost saving 'insurance' thing... But you can ask before next time if they can give you the infusion...

All the Best, and may God Bless...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #5  
Old Sun Aug 17, 2014, 03:16 PM
sbk007 sbk007 is offline
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My IV infusions took 1/2 hour but the wait time for them to make the drug was anywhere from 45min to an hour. I always wondered why they bothered to make an IV form of this drug after they already had the subQ. Wouldn't most people prefer an injection as opposed to getting poked with a needle and hooked up to an IV? 5 days in a row?, every month? Its not like the IV form was available first. I know from reading on here that many people have reactions and switch to IV.
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  #6  
Old Sun Aug 17, 2014, 06:44 PM
Chirley Chirley is offline
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I had my Vidaza IV. It was administered over 20-30 minutes. The longest part was waiting for the pharmacy to provide the drug in IV form. I have a Port so it was a simple matter of having the needle placed in my Port at the beginning of the cycle and removed at the end of the cycle. The blood tests were taken from the Port prior to giving the Vidaza....it was easy.
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  #7  
Old Sun Aug 17, 2014, 08:38 PM
Whizbang Whizbang is offline
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I think I must have had a high Dosage, 44mg of Dacogen, because my infusions never took less than 2 hours with pre meds (also IV)... at least 1 hour of Dacogen...

Or I have really good Insurance, and they could bill more...

First day I was in there 4 hours...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #8  
Old Sun Aug 17, 2014, 11:07 PM
Chirley Chirley is offline
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I was told that Vidaza has a very short half life and has to be given within an hour of being mixed that's why it was given over such a short time frame. It also meant it was very convenient because the treatment centre couldn't keep you waiting once the drug had been mixed.
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  #9  
Old Mon Aug 18, 2014, 06:24 AM
SLB SLB is offline
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I agree with you Chirley, the longest wait was always with the pharmacy. I was told the injection only lasted for 10-12 hours and because it was so expensive, they would only mix it once you were seating in the chair waiting! But with 2 injections for 7 days (14 in total), most weeks my stomach was a mess of bruises and bright red welts! These would later peel. But the up side is, once the injections were there, they took minutes to administered as long there was a nurse available!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #10  
Old Mon Aug 18, 2014, 07:12 PM
kgtuck kgtuck is offline
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Thumbs down Dacogen

I can confirm the previous information. For me, my IV infusions only takes about 1'15" each day for 5 days! I do go to a small satellite clinic and my nurse has the medicine ready and as soon as I walk in and it takes about 5-10 min. to mix. It's my understanding that the dosage depends on the person's weight, mine is 34 mg. Lucky to have this satellite clinic (personnel from Asheville, NC) in my small western North Carolina town. Some days take longer due to emergencies, mondays, etc. I keep hoping that Dacogen will be available in the form of injections, but my doctor says that the downside is pain at the site and that would mean 5 shots, so maybe not so good!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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  #11  
Old Mon Aug 18, 2014, 09:24 PM
Chirley Chirley is offline
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I really don't remember Vidaza dosages now but I do remember that because I wasn't responding I was just given the whole dose instead of the weight corrected dose. I think I was given something like 140mgs but it was still given over 20 to 30 minutes. It never really was an issue for me any way because it was a very rare day that I didn't need a blood transfusion or antibiotics or both. Most days were just plain LOOONG.

I have to remind myself when I'm having down days that I'm very grateful that I've moved on from the days of Vidaza and transfusions etc.

My thoughts are with everyone still going through treatment.
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  #12  
Old Fri Sep 12, 2014, 11:28 AM
Bambam Bambam is offline
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Vidaza didn't work for me

After four rounds of AZA (Vidaza) my doc has made a decision to stop the treatment as I have more leukemia cells now than before the first treatment five months ago and the treatment made me so sick and uncomfortable. My counts have never recovered since consolidation last September, but when I made "dysplastic remission" in November, I was hopeful. So now, with ANC of 0.11 and platelet TRX every few days, I'm starting to be even more afraid than when I was on that horrible AZA. For now, it's bloodwork twice a week and TRX as needed. The stats say this is sustainable for +/- 6 months. Do you know different?
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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  #13  
Old Sat Sep 13, 2014, 01:03 AM
kris kris is offline
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Vidaza subcutaneous

Just to interject a little. The initial clinical trials were sq injections. There have been a few SQ vs IV not much difference in outcome. But my understanding is that other than painful injection sites the side effects are less.

My husband was one of the fortunate ones that Vidaza did buy some quality time without transfusions for 2 years. he alternated ice and heat when he had a site that was bothersome.
Every journey is different. Blessing to each of your and your families.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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  #14  
Old Sat Sep 13, 2014, 05:37 AM
Birgitta-A Birgitta-A is offline
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After Vidaza

Hi Barnbarn!
As far as I understand you are treated in a good clinic and have already participated in a clinical trial.

Perhaps your doctor could try Promacta (eltrombopag) for your low platelets - there are patients who got better counts (not only platelets) after treatment with Promacta.

Then there are other clinical trials in Canada. Look at https://clinicaltrials.gov/ct2/resul...recr=Open&pg=1

I have not read anything about any of the new drugs that they are testing.
Kind regards
Birgitta-A
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  #15  
Old Sat Sep 13, 2014, 08:23 AM
shortcop shortcop is offline
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Quote:
Originally Posted by Wife Mary View Post
Besides Tylenol for the pain, does anyone have other comfort measures they've found helpful? Ice? He's miserable. Hasn't had this reaction for a long time and I've no recollection on what to do. Hate it when he suffers.
I am taken Vidaza but I am having it IV though a port. I wish I could help
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