azacitidine

[Faye R]

Can anyone help me I am the first person here in N.Z. to have azacitidine I have 2 injections 2cm apart for 5 days then another 2 days making it seven days all up then 21days stand down. What the nurses here want to do is give me the 2 files injected into one site using a butterfly Vidaza reps told them what to do and that was to inject the files separately. Has anyone had the 2 files injected into one site and what was the reaction. I am not happy with them even contemplating injecting both files into one site.

[Chirley]

Sorry Faye, I had mine IV. I was the second person in Aus to have Vidaza. The first man also had his IV. (Frightened me when he died and that left me the only one). Pity I cant help. Why don't you ring Celgene Australia? They are probably the people supplying it.

Surely, if you're uncomfortable having such a large amount in one needle, it's up to you if you want it in two needles...just my take on it...it's all going to get absorbed either way.

[Helen L]

Originally Posted by Chirley

Sorry Faye, I had mine IV. I was the second person in Aus to have Vidaza. The first man also had his IV. (Frightened me when he died and that left me the only one). Pity I cant help. Why don't you ring Celgene Australia? They are probably the people supplying it.

Surely, if you're uncomfortable having such a large amount in one needle, it's up to you if you want it in two needles...just my take on it...it's all going to get absorbed either way.

Depends on your body weight how much they give you. My husband was 110kg so had a large area to give 2 injections a day. If the injection sites were too close together he had a large inflamed area. He found it best to keep injection sites as far apart as possible using stomach and upper thighs. It stopped working for him after 2 years, he is now 100+ days BMT for CMML.

[Faye R]

Thanks everyone I told them that I was not happy to have it all in one spot and just as well as it track around my stomach really very fast felt like very bad sun burn. Used Primrose oil as suggested, now my counts are really very low so having transfusions, was told that it gets worse before it gets better.

[Annettec]

My mother (78 yrs old) is on her 10th cycle. In our region of Canada, I am told that they prescribe to the following: 7 consecutive days of 2 injections per day( each 2 cm apart), and to avoid skin issues, they move the injection site each day, rotating from arms, legs and stomach. Each cycle is one week of injection, followed by 3 weeks off! So far, my mother has done very well with very, very few side effects. In fact, she seems to be finding treatments easier as time goes by. Her cbc shows improvements and she is feeling really well. She unfortunately had a small set back this past week with a cold that gave her a fever. She was hospitalized as a precaution. She appears to be back to normal.

Vidaza has saved her life so far, and has provided her with an excellent quality of life..... We hope it continues.... While on her 1st cycle, I met a man who told me that he was on his 40th cycle of vidaza and still feeling great..... That was very encouraging.....

God bless all of you out there for sharing your stories....

[bailie]

I agree, " 7 consecutive days of 2 injections per day( each 2 cm apart)" that is what the manufacturer (Celgene) expressed to me as the only approved method. I did all stomach injections, but I did have to organize the injections to make them fit. I think the positive reaction to Vidaza saved my life. My numbers improved after second cycle.

[Cheryl C]

How are you going, Faye?

[Faye R]

first of all I have type up two posting and lost them,
My azacitidine hasn't gone down well they are now giving me halve the dose what is the normal amount do you know someone sent me a site to click on thanks for that I use to have 140mg now getting 70mg. counts climb with the full dose but have been in and out of hospital with side effects can handle half the dose very well don't know though if will do any good.
RCMD -RA counts now haemo 105 platelets 161 WBC 0.8 neutrop 0.16
I'm 72 years

[DanL]

Faye,

I am sorry to see that you have had some difficulties with Vidaza. The dose reduction is somewhat individualized based on your needs, but are also addressed by the protocols of the manufacturer, and takes into account blood counts and recovery times. with such low neutrophils, dose delays or reductions may make sense, or there is also the possibility of adding GCSF, or potentially antibiotics to your regimen for when your white counts are so low.

My recent treatment with Vidaza would knock my white blood counts down from the mid 3s and 4s to as low as .50 during the 3rd week of administration, and would also knock my platelets down from the 120k range down to the 25-30k range before recovering the next two weeks.

It does seem that everybody has a slightly different response to Vidaza. The first time that I took it about 1.5 years ago, I did not experience the same level of marrow suppression, but also only finished two rounds.

Lastly, ideal dosing that is tailored to a patient may take some time. Both Vidaza and Dacogen have had a few clinical trials where the doctors have stretched out the dosing over 10 days or 14 days - taking less for more days - with success rates that are still pretty good, but maybe less toxic to the right patient.

Wishing you strong and well.

[Neil Cuadra]

Originally Posted by Faye R

first of all I have type up two posting and lost them

Faye,

Losing a post you composed is really annoying. You can probably avoid having it happen again if you follow the tip about the "Remember Me?" checkbox in the Trouble posting thread.

[Chirley]

Faye, I regularly had neut counts of zero, and needed blood transfusions every week or two but my haem increased my Vidaza from 70 to 140 because it wasn't working. They all seem to do different things.

When my blast count increased despite the Vidaza...that's when he stopped it.

[Faye R]

Originally Posted by Cheryl C

How are you going, Faye?

Hi I have had many side effects to the vidaza treatment in and out of hospital each month, however I have lasted longer than anyone else here in Christchurch with double dose of vidaza that is 140mg. Now they have decided to give me I/2 the amount 70mg. I have lost a lot of weight, good news is for the first time in 7 years my counts have gone up. Hgb 112, wbc 2.0, anc 0.9, platelets 161.
RCMD-RA 16% blasts.

[DanL]

Woo hoo on the good counts! When the counts are good, I think we tend to feel better about the treatment and side effects.

[edwardbear]

Originally Posted by Faye R

Can anyone help me I am the first person here in N.Z. to have azacitidine I have 2 injections 2cm apart for 5 days then another 2 days making it seven days all up then 21days stand down. What the nurses here want to do is give me the 2 files injected into one site using a butterfly Vidaza reps told them what to do and that was to inject the files separately. Has anyone had the 2 files injected into one site and what was the reaction. I am not happy with them even contemplating injecting both files into one site.

Hi Faye. You may well be the first in NZ to get Azercitidine - I beleive I was number 3 in Auckland &due to start my 17th Cycle. I ussually have all Injections in my stomach (1 each side) & apply Calamine Cream (available at most Parmaccies) immediately after injections.

[Faye R]

Yip-ee at long last a New Zealander how are you going on Azacitidine. A decision was made to have the Azacitidine stopped Dec 2015 due to Toxicity I had been on it for 13 months and all that time had only three transfusions now back to one every three weeks bugger.
DX MDS RAEB-2 16% blasts dropped done to 8% after 3months of Azacitidine don't know what they are now.

[edwardbear]

Originally Posted by Faye R

Yip-ee at long last a New Zealander how are you going on Azacitidine. A decision was made to have the Azacitidine stopped Dec 2015 due to Toxicity I had been on it for 13 months and all that time had only three transfusions now back to one every three weeks bugger.
DX MDS RAEB-2 16% blasts dropped done to 8% after 3months of Azacitidine don't know what they are now.

Faye,
I am now the longest Patient in Auckland on Azacitidine. Its nearly 2 & a half years now. Have not needed a transfusion since 5th cycle. My treatment has been 7 days every 28 days (usually Mon-Fri then Mon & Tues). The Redness you experience can be best relieved with Calamine Cream - but not cured. I am aware of some patients who use a rotation of sites - stomach, arms, thighs (but in my experience legs are not pleasant).
I may be Contacted on <brian@teddybearsgigguide.net.nz>