Vidaza injection site reactions

[Wife Mary]

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.

[Birgitta-A]

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

[SLB]

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!

[Whizbang]

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...

[sbk007]

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.

[Chirley]

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.

[Whizbang]

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...

[Chirley]

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.

[SLB]

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!

[kgtuck]

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!

[Chirley]

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.

[Bambam]

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?

[kris]

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.

[Birgitta-A]

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

[shortcop]

Originally Posted by Wife Mary

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