Vidaza Dosing is different

[SandyB]

Hello All,
Mike is still undergoing Vidaza Treatment and his counts are not responding yet.

His dosing seems to be different than those normally used. He is getting 75mg. 5 days a week via his port, 5 days off and start again 7 days later. Has anyone had this type of regimen? On the regimen that you or your loved one received, how many doses did it take before the counts started coming up? I am wondering if I should insist on the dosing changes.

[eve]

hi sandy

when my dad started vidaza (then called 5-aza) in nov ’03 he was getting 130mg for 7 days every 4 weeks ( 1 week on 3 weeks off) – then after about 1 year they changed the dose to 100mg every 4-6 weeks, after about 22 treatments his dosage was lowered to 80mg every 4-6 weeks depending on how he was feeling – dad’s platelets never really got better with the treatments, but his need for transfusions become much further apart – sometimes as much as 4 or 5 months – as many of us have said before what works for one person with mds doesn’t necessarily work for another –

good luck
eve

[patti]

Sandy,

Because Mike has AML his protocol is likely to be vastly different because AML is usually aggressive. Instead of doing it a week on and 3 weeks off they are doing it the way you described. Perhaps that’s because they believe Mike shouldn’t be 3 weeks without something going in to try and knock out the blasts. Also, this would probably account for the lower doses given each time. It looks like they might be giving smaller doses more frequently rather then larger doses every 3 or 4 weeks. It’s definately worth asking his doctors to explain so you understand. It seems like for MDS patients it takes approx. 3-4 rounds before they start responding. But Mike has AML which is a whole new ballgame. Might respond sooner since he gets it more often, might be later. Again, another good question for his docs.

Hang in there,

patti

[Terri]

http://www.vidaza.com/corporateweb/vidazaus/homeB.nsf/Content/Dosing?

Hit this link it is the Pharmion website with the Dosing info for Healthcare provides it shows for shots or iv and it is indicating 75 mg x2 and that is what bob gets for 7 days on and 21 -28 off. total 150mg. It is supposed to be every four weeks according to the site. Bobs counts are holding as best as possible. Whites are still higher then norm, hgb gets in the 10’s and plts are hovering 40’s and 50’s

[SandyB]

Thank You Ladies. I appreciate the input.

I talked to the people at Pharmion today, and they were very helpful. During our conversation I thought it was odd that they said many persons got their injection with two needles. But, Terri are you saying that Bob gets 150mg each day that he gets the injections? In that case Mike is only getting 1/2 doses.

BTW, we hit 3.0 on whites today. First time since Oct. 20, 2006. I was so excited! Platelets were only 16 and that is worrisome. HGB hovering between 6.5 and 7.2. No transfusions yet.

[Terri]

Sandy Bob gets two shots 75mg/m2 each. That is the dosing on the Pharmion Vidaza website. The drug is very thick consistency that is why they have to use two needles. I read they are starting trials for ORAL vidaza I hope it goes through fast. Bob is running out of spots for the shots.

[maueenh]

Sandy,

My dad receives 2 injections, each with approx 75mg. The dosage is based upon the individual’s weight. He was originally on a one week on, three weeks off schedule that has been extended one week (off). As Patti points out, the protocol for MDS treatment vs AML may be very different.

Maureen

[Maryvillepat]

My husband has gone back to Vidaza after Revlimid didn’t work. He started on it this week. He gets two 75 mgs. by injection. The difference this time between last time (he had gone off it to try Revlimid) is that he is taking Kytril, an anti nausea drug before each injection, and he hasn’t been sick once since taking them! I don’t know if it’s a new drug but suspect it is. They gave him a couple samples, and since they worked, he got a script for them. Our prescription insurance covers them, so the copay is only $20. It’s well worth it to avoid the nausea and vomiting he used to get. His counts will probably drop with the first week’s dose, and it did in the past, and the doctor said it might not work at all this time, but we’ve got our fingers crossed, anyhow.
Pat

[SandyB]

Pat,

I will keep my fingers crossed too! Mike is taking Kytril and it has been wonderful. The only side effect is constipation and he takes metamusil and that helps. We are lucky our insurance covers Kytril too. It is normally $50.00 per pill.

Wanted to let everyone know, that yesterday, our Dr. said he thinks we are dealing with MDS and not AML. Please pray he is right.

Mike’s counts are still low, and on Monday they will decide whether to start treatment again, or try and take an extra week off to see what happens. He is only getting .75mg per dose instead of the 150mg. The Dr. is apprehensive about increasing just yet since everything is so down.

[Sara]

I am intimately familiar with both Vidaza and Dacogen. People, there are a few things you need to know and remember about these drugs:

1. They take at least 5 months to really start working. I know, 5 months can seem like an eternity. But hang in there…getting prolonged therapy is your very best chance at stabilization or remission with these drugs.

2. Dosing guidelines on a pharma company website are just that…GUIDELINES. Listen to your doctor..he has a reason for dosing you or your relative the way he has. There are all kinds of dosing regimens being tested, because the dosing in the package insert was developed in the late 90’s or early 2000’s, and much has been learned since then. Raeb-T or AML may require more-frequent or higer dosing. Also, the line between diagnosing Raeb-T or AML is fuzzy, so that further complicates dosing. Whatever the company website says about dosing is old news…docs have the latest studies where the national experts are trying different dosing regimens in order to get better responses.

3. BOTH of these drugs are available through IV dosing. Dac is only approved for being given in a hospital, although it is often given outpatient. Check your insurance to see if they’ll cover it outpatient..sometimes they do, sometimes they don’t.

4. Again..these drugs take a LONG time to work…at least 5 or 6 months. And in the first 3 months, the patient will experience siginificant myelosuppression. STAY on the therapy…the response rates are high if the patient stays on the drug. I just can’t stress this enough.

[SandyB]

Sara:

Thank you so much. We just returned from the Dr. and Mike’s dosage has been moved to 100mg. per dose. (Done by port).

He is still very tired as his hemo is at 7.5. But that beats the 6.3 he had been experiencing. His WBC is at 2.3 and his platelets at 16. I admire his courage as he has kept going without transfusions.

Both of us had considered stopping the medication, (started Jan. 15th) but we thought better if it. Your advice comes at a very good time.

I have talked with the people at Pharmion, and they assure me, that it takes a different amount of time for the medication to become effective for different people.

We will keep plugging away. Thanks again.

[Terri]

BOb has been on for almost Two years, this time Doctor Has tried different time spans in between. In 2003 Bob started Vidaza as 5 AZA before it was even approved. He took it for 6 rounds and it seemed to work, blast down. He was off for 7 months and the Blast started coming back so doctor put him back on and he has been on since. So far it has worked, However we see the doctor tomorrow I believe he will do a BMB as last visit he sent out for a Flow Cymetry test after reviewing his slides apparently something he did not like, The test came back indicating a bmb is in order as he has blast in the perip. blood. I just hope the vidaza did not stop working. Need some prayers

[Maryvillepat]

Hi all, my husband had his first round of Vidaza and finished it last week. He needed a TX this week, as his rbc were 6.3. Of course, since he was on it before going on Revlimid, he knew that the first cycle, the counts go down. It would be good if the oral version of Vidaza is approved, because then it could be used on a maintenance basis. Anyhow, we’re still praying and crossing our fingers, and send out prayers for all of you.
Pat

[SandyB]

Pat,

Mike and I will be praying for your husband as well.

Mike is receiving a 100mg. by port for 5 days this week. He is tired, but I think getting a little stronger.

Here is hoping that they both will do well.

[Maryvillepat]

Chuck has had to have another TX this week. His rbc was 6.8. Of course the first cycle for Vidaza has lower counts. His white cell count was low, too. He doesn’t know if he’ll be able to begin his second cycle next Monday or not. If his white cells are too low, he’ll have to wait.

[Author]

Posts